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Food & Nutrition Can certain foods trigger my IBD symptoms? Learn how certain foods may affect your IBD symptoms and why triggers can vary from person to person. Have you ever eaten something and then noticed your tummy started hurting, you felt bloated, or you needed to rush to the toilet? When you have inflammatory bowel disease (IBD), you might notice that some foods seem to make your symptoms worse. This can be confusing, especially when your friends can eat the same foods without any problems. The good news is that you don't have to avoid every food that might upset your tummy. Learning how your body responds to different foods can help you manage your symptoms without missing out on the foods you enjoy. 🍎 Can certain foods trigger IBD symptoms? Yes, some foods can make IBD symptoms feel worse for some people. However, everyone is different, and a food that bothers one person might be completely fine for someone else. Foods that some people find harder to tolerate include: Spicy foods: These can sometimes increase tummy discomfort or diarrhoea. Fatty or fried foods: These may make diarrhoea, bloating or nausea worse. Dairy products: Milk, ice cream and other dairy foods can cause wind, bloating or diarrhoea if you have difficulty digesting lactose. High-fibre foods: Raw vegetables, nuts, seeds and wholegrains may be harder to tolerate during a flare, particularly if you have a narrowing in your bowel. Fizzy drinks: These can increase wind and bloating. Caffeinated drinks: Drinks such as coffee and energy drinks may make you need the toilet more often. This doesn't mean these foods are bad for you or that you need to stop eating them. You might tolerate them perfectly well, even if you have IBD. 🔥 Does a food trigger mean my IBD is getting worse? Not necessarily! This is an important difference to understand. A food can make your symptoms worse without increasing the inflammation in your bowel. For example, you might eat a meal and notice that you have more wind, bloating or diarrhoea afterwards. This doesn't automatically mean your IBD is flaring. IBD symptoms can be caused by inflammation, changes in digestion, food intolerances and other factors. Sometimes, it can be difficult to tell what's causing the problem just by how you feel. If your symptoms are becoming more frequent or severe, tell your parent or carer and contact your IBD team. They can help you work out what's happening. 🩺 Why do my food triggers change? You might find that a food bothers you one week but doesn't cause any problems another time. This can happen for several reasons. During a flare: Inflammation can make your digestive system more sensitive. You might find it harder to tolerate certain foods, particularly those that are high in fibre or fat. When your IBD is under control: You may be able to eat a wider variety of foods without experiencing symptoms. When your body is changing: Growth, hormones, stress, sleep and other factors can affect how you feel. Your food triggers might also be different from those of someone else with Crohn's disease or ulcerative colitis. There is no single list of foods that everyone with IBD needs to avoid. 📝 How can I work out which foods affect me? If you think certain foods are making your symptoms worse, noticing patterns can help. You could try keeping a simple food and symptom diary for a short time. Write down: What you ate and drank. Any symptoms you noticed. When the symptoms started. Whether you were feeling well or having a flare. Anything else that might have affected how you felt, such as stress or poor sleep. You don't need to record every single thing you eat forever. Even a short diary can help you and your healthcare team spot patterns. Try not to blame a food after just one uncomfortable experience. Your symptoms might have another cause, and looking for patterns over time can give you a clearer picture. 🍽️ Should I stop eating foods that trigger my symptoms? Not necessarily. Before cutting out a food, think about how often it causes problems and how it affects you. Sometimes, a small change can help. For example, you might find that cooked vegetables are easier to tolerate than raw vegetables, or that a smaller meal feels more comfortable than a large one. If a food consistently causes problems, your IBD team or dietitian can help you find alternatives. Avoid cutting out lots of foods or entire food groups without getting advice. Your body needs enough energy, protein, vitamins and minerals to grow, develop and stay healthy. Restricting too many foods can make it harder to get everything you need. If you have a bowel narrowing or have been given specific dietary advice, follow the plan recommended by your healthcare team. 🥛 What if I think I have a food intolerance? Sometimes, symptoms after eating are caused by a food intolerance rather than IBD inflammation. For example, some people have difficulty digesting lactose, a natural sugar found in milk and some dairy products. This can cause bloating, wind, tummy pain and diarrhoea. If you suspect a food intolerance, talk to your parent or carer and your healthcare team before making significant changes to your diet. They can help you work out whether an intolerance might be involved and how to keep getting the nutrients you need. You shouldn't have to put up with uncomfortable symptoms, but you also shouldn't have to miss out on foods unnecessarily. 🎒 What if I get symptoms at school or when I'm out? Worrying about food can make school lunches, parties, sleepovers and eating out feel more difficult. A little planning can help you feel more confident. Choose foods you know you tolerate well when you need to feel comfortable. Keep snacks available if you sometimes struggle to eat a full meal. Check menus before going to a restaurant. Talk to your parent or carer about foods that make you feel unwell. Let a trusted adult know if symptoms are affecting your school day or social activities. You don't have to explain your IBD or your food choices to everyone. It's okay to keep things private if that's what you prefer. 💚 Do I need to eat a perfect diet to manage my IBD? Absolutely not! There is no perfect diet that works for every person with IBD. Food is about more than symptoms. It also gives you energy, supports your growth and lets you enjoy meals with family and friends. It's okay if you need to make changes sometimes. It's also okay to enjoy your favourite foods when they agree with you. The aim isn't to create a long list of foods you're not allowed to eat. It's to understand your body, find what works for you and make sure you're getting the nutrition you need. 🩺 When should I ask for help? Talk to your parent or carer, IBD nurse, doctor or dietitian if: You regularly feel unwell after eating. Your diarrhoea or tummy pain is getting worse. You're losing weight without meaning to. You're avoiding more and more foods. You're worried about eating or getting enough nutrition. You're unsure whether your symptoms are caused by food or a flare. Seek urgent medical advice if you have severe or worsening abdominal pain, significant bleeding, repeated vomiting or signs of dehydration. Your healthcare team can help you understand your symptoms and decide what to do next. ⭐ Remember Some foods can trigger symptoms, but that doesn't mean every food that upsets your tummy is making your IBD worse. Pay attention to how you feel, look for patterns and ask for help when you need it. You don't have to figure everything out on your own. You deserve to enjoy food without feeling worried about every bite. This article is for general information only and is not a substitute for medical advice. Food triggers and nutritional needs vary from person to person. Speak to your IBD team or a qualified dietitian before making significant changes to your diet. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Flares What to do in a flare This guide explains what to do when you think you’re having a flare, from telling your IBD team and taking your medicines to staying hydrated, eating enough and managing school. A flare is when your IBD becomes more active and you start having more symptoms than usual. You might have more diarrhoea, tummy pain, urgency, blood or mucus in your poo, tiredness, or a change in your appetite. A flare can feel worrying, but you don’t have to figure it out on your own. There are things you can do to look after yourself and get the right help. 🩺 1. Tell your IBD team If you think you’re having a flare, let your parent or carer know and contact your IBD team. They may want to know: How many times you’re going to the toilet Whether there is blood or mucus Whether you have tummy pain Whether you’re waking up at night to poo Whether you’re eating and drinking normally Whether you have lost weight Whether you have a fever How tired or unwell you feel Whether you’re taking your medicines as prescribed Your team may ask you to provide a stool sample , have blood tests, or come in for an appointment. These tests can help them work out whether your IBD is active and how much inflammation there is. 💊 2. Keep taking your medicines It can be tempting to stop your medicine when you feel sick of taking it — or because you think it isn’t helping. Don’t stop, start, or change your IBD medicines on your own. Take them exactly as prescribed unless your IBD team tells you to do something different. If you’re struggling to take your medicine because you feel sick, you can’t swallow it, or you’re worried about side effects, tell your parent or IBD team. 💧 3. Keep drinking Diarrhoea can make you lose extra fluid and salts. Try to drink regularly throughout the day. If you’re having lots of diarrhoea or vomiting, your healthcare team may recommend an oral rehydration solution . Signs that you may be getting dehydrated include: Feeling very thirsty A dry mouth Feeling dizzy or light-headed Peeing less than usual Darker urine Feeling unusually weak or sleepy Tell an adult if you’re worried that you might be dehydrated. 🍽️ 4. Keep your body fuelled Your body needs energy and nutrients, especially while it is dealing with inflammation and trying to grow. You usually don’t need to stop eating just because you’re having a flare . You may find that some foods make your symptoms feel worse, but try not to remove lots of foods from your diet without talking to your parent, doctor, or dietitian. If you’re struggling to eat, losing weight, or finding that eating makes your symptoms much worse, tell your IBD team. 🛌 5. Listen to your body Flares can make you incredibly tired. You might need: More sleep More breaks during the day Less physical activity for a while Help with schoolwork Help getting to the bathroom Resting when you need to doesn’t mean you’re being lazy. Your body is using a lot of energy dealing with inflammation. 🏫 6. Tell school what you need You don’t have to explain everything to everyone. Your parent or carer can work with your school to make things easier while you’re unwell. This might include: Being allowed to use the toilet whenever you need Sitting somewhere close to the door Having access to a private toilet Keeping spare clothes at school Taking extra breaks Reducing your workload temporarily Having flexibility with attendance Your school should know that a flare can affect more than just your tummy — it can affect your energy, concentration and ability to get through the day. 🚽 7. Make a toilet plan If you’re worried about having an accident, planning ahead can make going out feel much less stressful. You could: Find out where the toilets are when you arrive somewhere Sit near an easy exit Keep spare underwear and clothes in your bag Carry wipes or toilet paper Keep a plastic bag for dirty clothes Tell a trusted adult that you may need to leave quickly And remember: an accident is never something to be ashamed of. 🧠 8. Look after your feelings Flares can affect your head as well as your gut. You might feel: Embarrassed Angry Frustrated Worried Sad Different from your friends Scared about having an accident Worried that the flare will never end These feelings are completely understandable. Talk to someone you trust. You can also ask your IBD team for help if your worries or emotions are becoming difficult to manage. 🏃 9. Give yourself permission to slow down You might normally love sport, hanging out with friends, or being active. During a flare, you may not have the same energy. It’s okay to take a break. Once your symptoms improve, you can gradually get back to the activities you enjoy. Your healthcare team can help you work out what is safe and appropriate for you. 📝 10. Keep track of what is happening It can be useful to keep a simple record of your symptoms. You could write down: How many times you poo each day Whether there is blood or mucus Tummy pain Urgency Your temperature if you feel unwell What medicines you’ve taken How much you’re eating and drinking How you’re feeling overall This can make it much easier to explain what has been happening when you speak to your IBD team. 🚨 When should you get urgent help? Tell an adult straight away if you are becoming very unwell. Seek urgent medical help if you have severe or worsening abdominal pain, significant bleeding, repeated vomiting, signs of serious dehydration, a high fever, fainting, confusion, or you are difficult to wake or unusually sleepy. If you’re not sure whether your symptoms are serious, it’s always okay to ask for help. 💛 Remember A flare is not your fault . You haven’t caused it by being stressed, eating the “wrong” food, or doing something wrong. Your job isn’t to fix the flare yourself. Your job is to tell someone, look after yourself, and let your IBD team help you get back to feeling better. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Flares Flare survival kit Discover what to include in your flare survival kit to help you feel more comfortable, prepared, and supported when IBD symptoms get tough. Flare survival kit 💛 When you’re having a flare, little things can make a big difference. Having a few things ready can help you feel more comfortable, confident and prepared — especially when you’re going to school, seeing friends or leaving the house. 🎒 Keep a small flare bag You could keep a small bag packed with things you might need: Spare underwear A change of clothes Toilet paper or tissues Gentle, unscented wipes A waterproof bag for dirty clothes Hand sanitiser Your water bottle Any medicines you need to take while you’re out A familiar snack if you’re able to eat You don’t need to carry everything. Choose the things that make you feel prepared. 🚽 Know where the toilets are When you arrive somewhere new, have a quick look for the nearest toilet. Knowing where to go can take away some of the worry about “What if I suddenly need to go?” If you’re at school, make sure the adults who need to know understand that you may need to use the toilet without waiting. 👕 Wear clothes you feel comfortable in During a flare, you might feel bloated, sore or uncomfortable. Choose clothes that feel comfortable and are easy to get on and off quickly. You don’t have to dress differently — just wear what makes you feel good. 💧 Keep a drink nearby Keep your water bottle with you so you can drink regularly, especially if you’re having frequent diarrhoea. If your healthcare team has recommended an oral rehydration solution, you may want to keep some available too. 🛋️ Give yourself somewhere to rest If you’re tired or having tummy pain, having somewhere comfortable to sit or lie down can help. At school, this might mean having a quiet place where you can take a break when you need one. 🎧 Bring something that helps you relax Flares can be stressful. You might feel more comfortable having something familiar with you, such as: Headphones Music A book A game Something small to keep your hands busy 📱 Keep someone you trust close Having your phone or knowing who you can contact can make you feel safer when you’re away from home. Make sure you know who you can call if you suddenly feel unwell or need help. 🗣️ Have a plan with the people around you You don’t need to tell everyone about your IBD. Choose a few trusted people who know what you need when you’re having a flare — such as a parent, teacher, school nurse or friend. You could even have a simple phrase that means “I need to leave now.” 🧻 Don’t be afraid to prepare for accidents Having spare underwear and clothes with you might feel embarrassing at first, but being prepared can actually make you feel less worried . And if an accident does happen, remember: It’s not your fault. You have IBD. 💛 Find what works for you There’s no perfect flare kit and no right way to prepare. Think about the things that make you feel comfortable, safe and confident. Being prepared isn’t about expecting something to go wrong. It’s about knowing you’ll be okay if it does. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Flares What if I don't make it to the toilet? Learn what to do if you have an accident, how to feel more prepared, and ways to manage toilet anxiety when living with IBD. If you have Crohn’s disease or ulcerative colitis, you might sometimes need to use the toilet so urgently that you worry you won't make it in time. Maybe you've felt that sudden panic when you're in class, on the bus, playing sport or somewhere without a toilet nearby. You might worry about having an accident and what other people would think. First, take a breath. If this happens to you, it's not your fault, and you have absolutely nothing to be ashamed of. IBD can make it difficult to control when you need to go, and you're not the only kid who worries about this. 💙 What if I have an accident? Having a toilet accident can feel embarrassing, upsetting or even frightening. You might worry that your friends will find out or that it will happen again. If it happens, remember: It's not your fault. Your body is dealing with a medical condition. You haven't done anything wrong. You deserve kindness and help, not teasing or embarrassment. You can get through this, even if it feels really difficult at the time. Try to remember that an accident doesn't define you. It's something that happened, not who you are. 🧻 What should I do if it happens? If you don't make it to the toilet, you might feel like you want to disappear. But there are things you can do to make the situation easier. Find a trusted adult. Tell a teacher, school nurse or another adult who can help you. Get somewhere private. Ask to use a bathroom where you can clean yourself up comfortably. Change if you need to. Spare underwear, wipes and a change of clothes can help you feel more comfortable. Take your time. You don't need to rush or feel embarrassed about needing a few minutes. Tell your parent or carer. They can help you work out whether you need extra support with your symptoms. You don't have to explain what happened to everyone. A trusted adult can help you handle the situation privately. 🎒 How can I feel more prepared? You can't always predict when you'll need the toilet, but having a plan can help you feel less worried. You could keep a small emergency kit in your school bag with: Spare underwear. A spare pair of shorts or trousers. Wet wipes or tissues. A sealable plastic bag for soiled clothes. Any other supplies you might need. You could also ask your parent or carer to speak with your school about having a toilet pass, knowing which toilets you can use and keeping spare clothes somewhere accessible. If you're going somewhere new, finding out where the toilets are can help you feel more confident, too. Being prepared doesn't mean an accident will happen. It just means you'll know what to do if you need help. 🏫 What if I'm at school? School can feel especially stressful because you might worry about asking to leave class or having other kids notice. You have the right to ask for help with managing your IBD at school. Talk to your parent or carer about arranging support with your teachers. They can help make sure you can leave class quickly when you need the toilet and have somewhere private to go if you need to change. If you're worried about your classmates finding out, remember that you don't have to share personal medical information with them. You can simply say, “I wasn't feeling well,” if you want to explain why you left. 💭 What if I'm always worried it will happen? Sometimes, the fear of having an accident can become almost as difficult as the symptoms themselves. You might avoid sleepovers, school trips, sport or going out with friends because you're scared you won't reach a toilet in time. If this sounds familiar, please tell someone you trust. You deserve to enjoy these things without constantly feeling frightened. Planning ahead, knowing where the toilets are and carrying spare supplies can help. Talking to a parent, counsellor or IBD nurse about your worries can help, too. If you're having frequent urgency or accidents, tell your parent or carer so they can contact your IBD team. Your symptoms may need checking, and there may be ways to help you manage them better. 🌟 Remember, you're not alone Worrying about toilet accidents is something many kids with IBD understand. It can feel embarrassing to talk about, but you never need to feel ashamed of your body or your condition. If an accident happens, you deserve support and understanding. And if you're worried it might happen, you don't have to keep that fear to yourself. IBD can be unpredictable, but you deserve to feel safe, supported and included wherever you go. 💙 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Feelings & Mental Wellbeing Worrying about IBD Learn how to handle common worries, calm your mind, and know when it’s time to ask for support. Living with Crohn’s disease or ulcerative colitis can bring up lots of different feelings. Sometimes you might feel happy and well, and other times you might feel worried, scared, frustrated or overwhelmed. You might worry about having a flare, needing the toilet at school, taking medicine or missing out on things your friends are doing. You might even worry about what will happen in the future. If you feel this way, you're not alone. Worry is a normal part of living with IBD, and you don't have to deal with it all by yourself. Let's look at some common worries and things you can try to help you feel calmer and more in control. 🧠 Why do I worry so much? When you have IBD, there can be lots of things to think about. You might not always know when your tummy will hurt, when you'll need the toilet or whether you'll feel well enough to do something fun. Sometimes, your brain tries to protect you by thinking about all the things that might go wrong. It can feel like your mind won't switch off, even when everything is okay. You might notice that you: Keep thinking about your symptoms. Worry about getting sick when you're away from home. Feel nervous before school, sport or social events. Find it hard to fall asleep because you're thinking about tomorrow. Ask lots of questions because you want to know everything will be okay. These feelings can be tiring, especially when you're already dealing with a health condition. Remember, worrying doesn't mean you're doing anything wrong. It means something is bothering you, and you deserve help with it. 🚽 What if I need the toilet when I'm out? One common worry for kids with IBD is needing the toilet urgently when they're away from home. You might worry about being in class, visiting a friend's house, going shopping or being somewhere you don't know. A little planning can help you feel more confident. Know where the toilets are. When you arrive somewhere new, find out where the nearest toilet is. Have a backup plan. Keep spare underwear, wipes or anything else you might need in your bag. Tell someone you trust. A parent, teacher or friend can help if you feel worried. Remind yourself that it's okay to go. You don't need to wait for permission when you urgently need the toilet. You can't control everything your body does, but you can make a plan for what to do if something unexpected happens. And remember, needing the toilet is nothing to be ashamed of. 🔄 What if I have another flare? When you've experienced a flare before, it can be scary to think about going through it again. You might notice every little tummy ache or change in how you feel and wonder whether your IBD is getting worse. It's understandable to feel worried, especially if a previous flare was difficult. Here are some things that might help: Notice your feelings without jumping to conclusions. A tummy ache doesn't automatically mean you're having a flare. Talk to an adult. Tell your parent or carer what you're noticing and what you're worried about. Follow your care plan. If you have symptoms that concern you, ask your parent or carer to contact your IBD team. Focus on what you know right now. Try not to let worries about what might happen take over your whole day. You don't have to figure out whether you're having a flare by yourself. Your family and medical team can help you work out what's happening. 🏫 What if something embarrassing happens at school? You might worry about having an accident, needing to leave class suddenly or having your classmates ask questions about your IBD. These worries can make school feel stressful, even on days when you're feeling well. One helpful thing you can do is make a plan with your parent or carer and school. You could arrange a toilet pass, identify a trusted teacher and keep spare clothes somewhere safe. It can also help to think about what you would say if someone asked a question. For example: “I have a health condition that sometimes means I need the toilet quickly.” “I'm not feeling well, so I need to take a break.” “I'd rather not talk about that.” You don't owe everyone an explanation about your health. Having a plan doesn't mean something embarrassing will happen. It simply means you'll know what to do if you need help. 🌬️ How can I calm my mind when I feel worried? When you're worried, your thoughts can sometimes feel really big. You might feel restless, have butterflies in your tummy or find it difficult to concentrate. Here are a few things you can try when your worries start to build. 🌬️ Try slow breathing Find somewhere comfortable to sit. Breathe in gently through your nose, then breathe out slowly. Repeat a few times without forcing your breath. Let your shoulders relax as you breathe out. You don't need to make every worry disappear. Just give yourself a moment to slow down. 🖐️ Use your five senses If your mind is racing, try bringing your attention back to what's around you. Name five things you can see. Notice four things you can feel. Listen for three things you can hear. Notice two things you can smell. Name one thing you can taste. This can help bring your attention back to the present moment instead of getting caught up in worrying about what might happen. ✏️ Write your worries down Sometimes, worries feel bigger when you keep them all inside your head. Try writing down what's bothering you. You could use a notebook, draw a picture or tell someone about it. Then ask yourself: “Is there something I can do about this right now?” If there is, think of one small step you can take. If there isn't, try reminding yourself that you don't have to solve everything today. 🎨 Do something you enjoy Listen to music, draw, read a book, play with your pet or spend time with a friend. Doing something enjoyable won't always make your worries disappear, but it can give your brain a break. You are allowed to have fun, even when you're worried about your health. 💭 What if I can't stop thinking about my IBD? Sometimes, worries keep coming back even when you try to distract yourself. You might find yourself checking how your tummy feels over and over, imagining the worst or asking the same questions because you need reassurance. When this happens, try to be kind to yourself. You could say to yourself: “It's okay that I'm feeling worried.” “I don't have to work everything out right now.” “I can ask for help if I need it.” “I'm allowed to enjoy today, even if I can't predict what will happen tomorrow.” You don't have to pretend you aren't worried. The goal isn't to never feel anxious. It's to learn ways to handle those feelings so they don't take over everything you do. If your worries keep coming back or stop you from doing things you enjoy, it's okay to ask for extra support. 💬 How do I tell someone I'm worried? Sometimes, talking about your worries can feel harder than keeping them to yourself. You might not want to upset your parents, or you might think other people won't understand what you're going through. But you deserve to be listened to. You could start by talking to: A parent or carer. A trusted teacher or school counsellor. Your IBD nurse or doctor. Another adult who makes you feel safe. You don't need to know exactly what to say. You could simply tell them, “I've been worrying a lot about my IBD, and I don't really know how to deal with it.” If talking feels difficult, you could write your feelings down or send a message instead. Your IBD team can also help you find someone who understands the emotional side of living with a long-term health condition. ❤️ When should I ask for extra support? Everyone worries sometimes, but you shouldn't have to feel worried all the time. It's a good idea to tell a trusted adult if: You worry so much that it's hard to enjoy things. You avoid school, sport or seeing friends because you're scared. You have trouble sleeping because of your worries. You feel upset, overwhelmed or frightened most days. You keep your feelings to yourself because you don't know how to explain them. A counsellor or psychologist can teach you ways to manage anxiety and cope with the challenges of living with IBD. Getting help doesn't mean you're weak. It means you're taking care of your emotional health, too. If your worries are about new or worsening physical symptoms, tell your parent or carer so they can help you get appropriate medical advice. 🌈 Remember, you don't have to face your worries alone Living with IBD can sometimes feel unpredictable, and it's okay to have days when you're scared, frustrated or fed up. You don't have to be brave every minute of every day. You don't have to hide your feelings or pretend everything is fine. Talk to someone you trust, make a plan for the things that worry you and give yourself permission to enjoy the good moments. Your IBD is one part of your life, but it isn't your whole life. You deserve to laugh, play, make friends, try new things and look forward to the future. One worry at a time. One day at a time. You've got this. 💙 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Flares What is a flare? Learn about common flare symptoms, what can cause them, what to do when your symptoms change and when to ask for help. If you have IBD, you might hear people talk about “having a flare.” But what does that actually mean? A flare is a time when the inflammation caused by your IBD becomes more active. When your IBD is well controlled, you might feel pretty normal and be able to get on with your everyday life. During a flare, your IBD symptoms can come back or become stronger. 🔥 What can a flare feel like? Everyone's IBD is different, so your symptoms might not be the same as someone else's. During a flare, you might notice: 🚽 Changes when you go to the toilet You might: Have diarrhoea Need to poo more often Suddenly need to find a toilet Have blood or mucus in your poo Feel like you still need to go after you've been You might also have more accidents than usual. 🤕 Tummy pain You might have tummy aches, cramps or pain. The pain might come and go, or it might stick around for longer. If your tummy pain is severe or getting worse, tell an adult and contact your healthcare team. 😴 Feeling really tired A flare can leave you feeling completely exhausted . You might find school harder, struggle to concentrate or feel like you need to sleep more than usual. This isn't because you're being lazy. Your body is dealing with inflammation, and that can take a lot of energy. 🍽️ Changes in your appetite You might not feel as hungry as usual. You might not feel like eating your normal meals or find that eating makes you feel uncomfortable. If you're struggling to eat or drink enough, tell your parent, carer or healthcare team. ⚖️ Changes in your weight If you're having a flare, you might lose weight without trying. For children and teenagers, your healthcare team will also keep an eye on your growth and development . That's one of the reasons regular appointments are important. 🤒 Feeling generally unwell Sometimes you might feel like you've got no energy, feel feverish or just know that something isn't right . You might also notice symptoms outside your gut, such as sore joints, mouth ulcers or skin or eye problems. Tell your healthcare team about new or unusual symptoms. 🧐 How do I know if I'm having a flare? You might notice that you're having more symptoms than usual or that your normal symptoms have changed. That's why it helps to know what is normal for you . For example, if you normally go to the toilet twice a day but suddenly you're going six times a day, that's something worth telling someone about. But having one bad tummy day doesn't necessarily mean you're having a flare. Things like infections can cause symptoms that look similar to an IBD flare. Your healthcare team can help work out what's happening. 💭 What causes a flare? Sometimes you might know why your symptoms have changed. Other times, there may not be an obvious reason . It's important not to blame yourself. A flare doesn't mean: ❌ You ate the wrong thing ❌ You didn't exercise enough ❌ You were stressed ❌ You did something wrong ❌ You didn't try hard enough IBD is complicated, and flares can happen even when you're doing everything you're supposed to do. 🩺 What should I do if I think I'm having a flare? Tell someone. Start with your parent, carer or another adult you trust. They can help you contact your IBD team if needed. Your healthcare team might ask you questions about your symptoms and may want you to have blood or poo tests to check what's happening. You might have a plan from your IBD team that tells you what to do when your symptoms change. If you have one, follow your individual plan. 💊 Keep taking your medicines If you take regular IBD medicine, keep taking it as prescribed unless your healthcare team tells you otherwise. Don't stop or change your medicine on your own. If you're having trouble taking your medicine or you're worried about side effects, tell your parent, carer or IBD team. 💧 Look after yourself When you're having symptoms, try to give your body what it needs. This might mean: Drinking regularly Eating what you can tolerate Getting plenty of rest Taking breaks Asking for help Following the advice from your healthcare team You don't have to push through everything. 🏫 What about school? A flare can make school harder. You might need: Easier access to the toilet Time away from class Extra rest breaks Help catching up on work Extra time for assignments or tests Changes to PE or sport Your school can help put support in place. You don't have to explain your symptoms to everyone. You can have a trusted teacher or staff member who knows what's going on and can help you when you need it. 💛 What about friends? You decide what you want your friends to know. You don't have to explain every detail of your IBD. You could simply say: “I'm having a bit of a flare at the moment, so I might need to take it easy.” Or: “My IBD is playing up, but I'll be okay.” The people who care about you will understand that sometimes you might need extra support. 🚩 When should I get help quickly? Tell an adult straight away if you feel seriously unwell. You may need urgent medical help if you have things like: Severe or worsening tummy pain A lot of blood in your poo Repeated vomiting Signs of dehydration Fainting or feeling like you might faint A high fever or feeling very unwell If you're not sure whether something is serious, tell an adult rather than trying to deal with it by yourself . 😊 What happens after a flare? The goal of treatment is to get your IBD back under control. When the inflammation settles down, your symptoms should improve. This is called remission . You might start feeling more like yourself again. Your energy can come back. School can feel easier. You can get back to your sport, hobbies and hanging out with friends. Sometimes it takes a little while, though. You don't have to rush your recovery. 🌱 You can learn your own warning signs As you get to know your IBD, you'll start to learn what changes might mean that something isn't quite right. You might notice: “I'm going to the toilet more.” “I'm much more tired.” “My tummy hurts again.” “I don't feel like eating.” Learning your own warning signs can help you speak up early. You don't have to become an expert overnight. You'll learn as you go. 💛 Remember Having a flare can be frustrating, uncomfortable and sometimes scary. But a flare doesn't mean you've failed . It doesn't mean you've done anything wrong. And it doesn't mean you'll feel this way forever. Tell someone when your symptoms change, follow the plan from your healthcare team and give your body time to recover. Your IBD is something you manage — it isn't who you are. You are still you. And when the flare settles, you'll get back to doing the things you love. One day at a time. 💛 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

School Going back to school after an IBD Flare Learn how to make the transition back to school easier with practical tips for managing toilet trips, tiredness, schoolwork, friends, PE and what to do if your symptoms return. Going back to school after an IBD flare can feel like a big step . You might be excited to see your friends again and get back to your normal routine. But you might also be worried about needing the toilet, feeling tired, catching up on work, or having another flare while you're at school. You might be thinking: “What if I need the toilet suddenly?” “What if I have an accident?” “What if everyone asks where I've been?” “What if I get tired?” These worries are completely understandable. The good news is that you don't have to figure everything out on your own . A little planning can make going back to school feel much easier. 🟣 Going back to school Before you return, talk to your parent, carer, teacher, or another adult you trust about anything you're worried about. It can help to have a plan for: Getting to the toilet quickly What to do if you feel unwell Catching up on schoolwork Taking breaks if you're tired Keeping spare clothes at school Getting help if your symptoms suddenly get worse Knowing what will happen can make your first day back feel much less stressful. 🚽 Make a toilet plan One of the biggest worries after an IBD flare can be needing the toilet urgently . Before you go back, make sure you know: Where the closest toilets are Which toilet you're allowed to use Who you can tell if you need to leave class quickly What to do if you need the toilet during an assessment Where your spare clothes are kept You should be able to use the toilet when you need to. You shouldn't have to sit in class worrying that you won't make it in time. Talk to your teacher about having a quiet and discreet way to leave the classroom when you need to go. You shouldn't have to explain your symptoms in front of everyone. 🎒 Pack a school survival kit Having a few things with you can make you feel much more prepared. You might want to keep: Spare underwear Spare shorts or pants Tissues or toilet paper Gentle wipes A waterproof bag for dirty clothes A water bottle Any medicines you need to take at school A small snack if you're able to eat You don't need to carry a huge bag of supplies. Just keep the things that make you feel more comfortable and confident . 😴 You might still be tired Even if your tummy is starting to feel better, you might still feel exhausted. A flare can take a lot out of your body. You might notice that: A full school day feels harder than it used to You have trouble concentrating You need more breaks You don't have enough energy for PE You're exhausted when you get home That's okay. You don't have to be back to 100% on your first day. If you need extra rest or flexibility while you're recovering, talk to your school and your parent or carer. 📚 Catching up on schoolwork Being away from school can mean you've missed a lot of work. Coming back to a huge pile of assignments can feel overwhelming. You don't have to catch up on everything at once. Ask your teachers: “What do I need to catch up on first?” They may be able to give you: Extra time Extensions Notes from lessons you missed Help prioritising your work Changes to assessment dates A smaller amount of work to complete while you're recovering Remember: Missing school because you were sick doesn't mean you're falling behind forever. Give yourself time. 💬 What do I tell my friends? That's completely up to you. You don't have to tell everyone that you have IBD. If someone asks where you've been, you could simply say: “I've been unwell, but I'm feeling better now.” If you want to tell them about your IBD, you can. You might say: “I have IBD. It's a condition that can sometimes make me really sick, so I sometimes need time off school.” You get to decide who knows and how much you want to share . You don't owe anyone your medical information. 🚽 What if someone asks why I keep going to the toilet? You don't have to explain. You can simply say: “I just need to go.” Or: “It's a health thing.” Then change the subject. If someone makes a joke about you using the toilet, remember that there is nothing embarrassing about looking after your health . Anyone who needs the toilet should be able to use it without being made to feel ashamed. 🏃 Getting back to sport You might be excited to get back to sport and PE. Or you might not feel ready yet. Both are okay. If you're still recovering from a flare, talk to your parent, carer and healthcare team about when you're ready to get back to exercise. You might need to: Take it easier Take extra breaks Modify an activity Sit out for a while Build up your activity gradually Listen to your body. You don't have to prove that you're better by pushing yourself too hard. 🩺 What if I suddenly feel sick? Sometimes symptoms can appear when you weren't expecting them. If you suddenly feel unwell at school, tell someone . You might need to: Go to the toilet Sit somewhere quiet Call your parent or carer Go home Get medical help Know who your trusted person at school is before you need them. That way, you don't have to work out what to do while you're feeling sick. 💛 It's okay to feel nervous You might feel nervous about your first day back. You might worry about having an accident, being away from home, or what your friends will think. That's normal. Try not to think about the entire week at once. Think about one step at a time . Get ready in the morning. Get through your first lesson. Then get through lunch. Then make it to the end of the day. You don't have to solve everything before you've even arrived. 🌱 Give yourself time You might expect yourself to feel completely normal as soon as you return to school. But recovery doesn't always happen that way. You might have a great day and then feel exhausted afterwards. You might feel better one day and have more symptoms the next. You might need extra support for a while. That's not failing. It's part of recovering. Be patient with yourself while your body gets back into its routine. 🚩 If your symptoms start getting worse Pay attention if you notice changes such as: More diarrhoea More frequent toilet trips Blood or mucus in your poo Increasing tummy pain Feeling much more tired Losing your appetite Feeling generally unwell These symptoms don't automatically mean you're having another flare, but it's important to tell your parent, carer or IBD team if things are changing. You don't have to wait until you're really sick before saying something. 💛 Remember Going back to school after an IBD flare can be scary. But you don't have to do it perfectly. Ask for help. Take breaks when you need them. Use the toilet when you need to. Tell someone when you're not feeling well. And don't be embarrassed about something you can't control. Your IBD is only one part of you . You're still you — your friends, your hobbies, your sport, your favourite subjects, your personality and your dreams are all still there. You might need a little extra support while you get back into your routine, and that's okay. Take it one day at a time. 💛 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Flares Signs I might be having a flare Learn about the signs to look out for, including changes in your poo, tummy pain, urgency, tiredness, appetite, weight, and how you’re feeling. Signs I might be having a flare 🚩 Sometimes it can be hard to know whether your IBD symptoms are just having a bad day or whether you might be having a flare . A flare means your IBD has become more active, causing inflammation in your gut. Everyone can experience a flare differently, but there are some signs to look out for. 🚽 Changes in your poo You might notice: Going to the toilet more often than usual Diarrhoea or looser poo Needing to get to the toilet very quickly Waking up during the night to poo Blood in your poo Mucus in your poo A change in how your poo normally looks 🤕 Tummy symptoms You might have: Tummy pain or cramps Bloating Feeling like you still need to poo after going More urgency than usual More accidents or near-misses 😴 Feeling different A flare can affect your whole body, not just your gut. You might notice: Feeling much more tired than usual Having less energy for school, sport or seeing friends Losing your appetite Losing weight without trying Feeling generally unwell A temperature or fever 🧠 Your mood can change too When your symptoms get worse, you might feel: More worried about getting to the toilet Embarrassed Irritable Anxious about going to school Less interested in seeing friends Frustrated or upset Your mental health can also affect how you experience your symptoms, so it’s important to tell someone how you’re feeling. 🔎 What should I do if I notice these signs? Don’t try to work out on your own whether you’re definitely having a flare. Tell your parent, carer, or another trusted adult what you’ve noticed. They can help you contact your IBD team. Your IBD team may ask about your symptoms and may want to do tests, such as blood tests or a stool test, to check whether there is inflammation. Don’t stop or change your IBD medicine on your own , even if you think you’re having a flare. Speak to your healthcare team first. 💛 Remember One bad poo or one day of tummy pain doesn’t necessarily mean you’re having a flare . But if you notice a change from what is normal for you , especially if symptoms are continuing or getting worse, it’s worth telling someone. You know your body better than anyone. If something doesn’t feel right, speak up. 🗣️ Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Flares How to manage stomach pain during a flare Learn practical ways to stay comfortable, including rest, gentle warmth, staying hydrated, eating when you can and knowing when to tell an adult or contact your IBD team. Tummy pain can be one of the hardest parts of an IBD flare. It can make it difficult to concentrate at school, sleep, eat, play sport or even feel like doing anything at all. You might wonder: “How can I make it hurt less?” There are things that may help you feel more comfortable, but it's also important to remember that pain during a flare can be a sign that your IBD needs attention . You shouldn't have to deal with ongoing or worsening pain on your own. 🩺 Tell someone what's happening If your tummy pain is getting worse or is different from what you normally experience, tell your parent, carer or another trusted adult. Your IBD team may want to know about: Where the pain is When it started How often it happens How bad it feels Whether it comes and goes or stays there Whether eating or going to the toilet changes it Whether you have other symptoms, such as diarrhoea, vomiting or blood in your poo You don't need to work out what's causing the pain yourself. Your healthcare team can help. 💊 Keep taking your IBD medicine If you're having a flare, you might be tempted to stop your medicine because you're feeling sick or because you think it isn't working. Don't stop or change your IBD medication unless your healthcare team tells you to. If you're struggling to take your medicine, tell your parent, carer or IBD team. They can tell you what to do. 🛋️ Give your body a break When your tummy hurts, your body may need more rest. Try finding somewhere comfortable where you can relax. You might: Lie down for a while Read Listen to music Watch something Play a quiet game Take a break from schoolwork Have a nap if you need one You don't have to push through the pain just because you have things to do. ♨️ Try gentle warmth Some people find that gentle warmth on their tummy feels soothing. You could try a warm — not hot — heat pack or hot-water bottle wrapped in a towel. Don't put something very hot directly against your skin. If you're using a heat pack, follow its instructions and ask an adult to help if you're unsure. And remember: warmth may help you feel more comfortable, but it doesn't treat the inflammation causing an IBD flare . 💧 Keep drinking Diarrhoea and vomiting can cause you to lose fluids, which can make you feel even worse. Try to drink regularly. If you're having a lot of diarrhoea or have been advised by your healthcare team to use an oral rehydration solution, follow your individual plan. If you're struggling to keep fluids down or you're showing signs of dehydration, tell an adult straight away. 🍽️ Don't force yourself to eat When your tummy hurts, you might not feel hungry. Try to keep getting enough food and fluids if you can, but don't make yourself eat foods that you know make your symptoms worse . You may find smaller meals or snacks easier than large meals. If you're struggling to eat enough, losing weight or worried about what you should be eating during a flare, talk to your parent, carer, doctor or dietitian. There isn't one “IBD flare diet” that works for everyone. 🚽 Give yourself time Sometimes tummy cramps happen around going to the toilet. If you feel the urge to go, try not to ignore it. Make sure you know where the nearest toilet is, especially if you're at school or out with friends. Having a toilet plan can also reduce some of the worry that comes with urgency. 🧘 Find something that helps you relax Pain and worry can sometimes make each other feel worse. You might find it helpful to try something calming while you're resting. For example: Slow, steady breathing Listening to music Watching a favourite show Reading Talking to someone you trust Doing something that takes your mind off the pain This doesn't mean the pain is “all in your head”. Your pain is real. Relaxation is simply one way of helping your body cope while you're getting the medical care you need. 💊 What pain medicine can I take? Don't automatically reach for painkillers when your tummy hurts. Some medicines that are commonly used for pain, such as NSAIDs including ibuprofen, may not be suitable for some people with IBD. Ask your parent, carer, doctor, pharmacist or IBD team which pain relief is safe for you . Never take someone else's medication. 📝 Keep track of your symptoms If your pain keeps happening, it can help to keep a simple record. You could write down: When: Morning / afternoon / night Where: Upper / lower / left / right / all over How bad: Mild / moderate / severe How long: A few minutes / hours / constant Other symptoms: Diarrhoea / blood / vomiting / fever / tiredness You don't have to track every single thing forever. A short record can help you explain what's happening to your healthcare team. 🏫 What if I'm at school? You don't have to sit quietly in class and hope the pain goes away. Tell your teacher or trusted school staff member if you're feeling unwell. You might need to: Go to the toilet Rest somewhere quiet Contact your parent or carer Go home Get medical help If you have an individual school plan for your IBD, make sure you know what it says. 🚩 When is tummy pain an emergency? Most tummy pain during a flare doesn't mean something dangerous is happening. But severe or rapidly worsening pain needs urgent medical attention . Tell an adult straight away if: Your pain is severe or getting much worse Your tummy becomes very swollen or hard You're repeatedly vomiting You have significant or increasing blood in your poo You feel faint, very dizzy or unusually weak You can't keep fluids down You have a high fever or feel seriously unwell If you are seriously unwell or there is an emergency, call 000 in Australia. Don't try to manage severe pain by yourself. 💛 You don't have to tough it out You might feel like you should just put up with your tummy pain. You don't. Pain is your body's way of telling you that something is happening, and your healthcare team needs to know if it is changing or getting worse. Asking for help doesn't make you weak. It means you're looking after yourself. 🌱 Remember There isn't one trick that makes IBD tummy pain disappear. Rest, gentle warmth, drinking enough and finding ways to stay comfortable may help you cope with the pain. But if you're having an IBD flare, the inflammation itself needs to be managed by your healthcare team . Tell someone when your pain changes. Follow your IBD team's plan. And give yourself permission to rest. You don't have to push through pain to prove you're okay. 💛 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

New Diagnosis What does my diagnosis mean? Learn what your diagnosis means, what to expect with treatment, flares, school, food, sport and appointments — and why having IBD doesn't mean you have to stop doing the things you love. So you've been told you have IBD. Maybe you feel relieved to finally have an answer. Maybe you're scared. Maybe you're confused, angry, sad — or you don't really feel anything yet. There isn't a right way to feel. Being diagnosed with IBD can be a lot to take in, especially when you've probably heard lots of new words, had tests and met new doctors. You might be wondering: “What does this actually mean for me?” “Am I going to have this forever?” “Can I still go to school?” “Can I still play sport?” “Will I have to change what I eat?” “Is my life going to be different now?” Let's break it down. 🩺 What is IBD? IBD stands for inflammatory bowel disease . The two main types are Crohn's disease and ulcerative colitis . IBD causes inflammation in parts of your digestive system. It's a chronic condition , which means it can be with you for a long time. But that doesn't mean you're going to feel sick all the time. IBD can have periods when symptoms are active, called a flare , and periods when symptoms are much better or gone, called remission . Your healthcare team will work with you to help control the inflammation and keep you feeling as well as possible. 💊 Does this mean I'll always need medicine? You may need medicines to help control your IBD and keep inflammation under control. There are different types of IBD medicines, and the treatment that works for one person might not be the same as what works for someone else. Your IBD team will explain: What medicine you're taking Why you're taking it When you need to take it What side effects to look out for What to do if you miss a dose When you'll need check-ups or tests You might need to take medicine even when you're feeling well. That's because treatment isn't just about making symptoms better — it's also about helping control the inflammation. Never stop or change your medicine without talking to your IBD team first. 🔄 What happens if I have a flare? Even when your IBD is well controlled, you may have a flare at some point. A flare means the inflammation in your gut has become more active. You might notice symptoms such as: More diarrhoea Needing the toilet more often Urgency Tummy pain Blood or mucus in your poo Feeling really tired Losing your appetite Your symptoms might not look exactly like someone else's. That's why it's important to know what's normal for you and tell your parent, carer or IBD team when something changes. Having a flare doesn't mean you've done something wrong. 🏫 Can I still go to school? Yes. IBD might mean you sometimes need time off school, especially when you're unwell or having tests and appointments. But when you're feeling well, you can still go to school, learn, hang out with your friends and do the things you enjoy. Your school can also put support in place to make things easier. This might include: Easy access to the toilet A toilet pass Extra time for schoolwork Help catching up after being away Rest breaks when you're tired Support during exams Understanding from your teachers You don't have to tell your whole class about your IBD. You can decide who you want to know. 🏃 Can I still play sport? For most young people with IBD, being active is still an important part of life . You may be able to play the sports you enjoy when you're feeling well. During a flare, you might need to slow down, rest or change what you're doing for a while. Your healthcare team can help you work out what's right for you. Having IBD doesn't mean you have to give up the things you love. 🍎 Do I have to change what I eat? Not necessarily. There isn't one diet that works for everyone with IBD. Some foods might make your symptoms feel worse, especially when you're having a flare, while other foods may be completely fine for you. Your healthcare team or dietitian can help you work out what you need. It's important to make sure you're getting enough energy and nutrients to grow and stay healthy , especially while you're still growing. Don't make big changes to your diet or cut out lots of foods without talking to your healthcare team. 🧪 Why will I need more tests? Even when you're feeling well, your IBD team may want to check how your body is doing. You might have: Blood tests Poo tests such as faecal calprotectin Scans Endoscopies or colonoscopies Growth and weight checks Some of these tests help your doctors see whether there is still inflammation, even if you aren't having many symptoms. Think of them as pieces of a bigger picture . Your doctors use your symptoms, test results and how you're growing and feeling to help decide whether your treatment is working. 🧠 What about how I'm feeling? IBD isn't just about your gut. Having a long-term health condition can affect how you feel emotionally too. You might feel: Worried about having another flare Embarrassed about needing the toilet Frustrated about taking medicine Angry that this happened to you Different from your friends Tired of appointments and tests Nervous about telling people Totally fine one day and upset the next All of these feelings can happen. If IBD is getting you down, tell someone . You could talk to your parent, carer, IBD nurse, doctor, school counsellor or another adult you trust. Looking after your mental health is part of looking after your IBD. 💛 Does having IBD mean I'm different? You might feel different right now. But having IBD doesn't change who you are. You're still: You. You can still have friends. You can still fall in love. You can still play sport. You can still travel. You can still go to school. You can still have sleepovers. You can still study. You can still have a career. You can still do the things you dream about doing. Sometimes IBD might mean you need to plan a little more. Sometimes you might need extra support. But IBD does not get to decide what your future looks like. 🌱 Will I have IBD forever? IBD is a long-term condition, and there currently isn't a cure. But there are lots of treatments that can help control inflammation and keep people well. Many people with IBD have long periods where they feel well and get on with everyday life. Treatment and research are also continuing to improve. Your IBD team will help you manage your condition as you grow and become more independent. And as you get older, you'll learn more about your own body and how to look after yourself. 🧑🤝🧑 You don't have to manage it alone When you're first diagnosed, your parent or carer will probably be involved in lots of your healthcare. That's okay. As you get older, you'll gradually learn how to: Understand your medicines Know your symptoms Prepare for appointments Ask your own questions Speak up when something doesn't feel right Manage your healthcare more independently You don't have to know how to do all of this straight away. You'll learn as you go. ❓ Questions you might want to ask your IBD team You don't have to remember everything your doctors tell you. Write down questions or keep them in your phone. You could ask: “Which type of IBD do I have?” “Where is my IBD in my body?” “What treatment am I starting?” “What should I do if I think I'm having a flare?” “What symptoms should I tell you about?” “How often will I need appointments?” “Can I still play my sport?” “What should my school know?” “Who can I contact if I'm worried?” There are no silly questions. 💛 You are more than your diagnosis It might feel like IBD is a huge part of your life right now . That's understandable. There's a lot to learn, and you may have more appointments and tests than you're used to. But over time, IBD can become something you manage , rather than something that takes over everything. You will learn what works for you. You'll learn how to recognise changes in your body. You'll learn when to ask for help. And you'll have a team of people supporting you along the way. 🌟 Remember Being diagnosed with IBD is a big thing. But your diagnosis is not your identity . You are still the same person you were before you heard the words “Crohn's disease” or “ulcerative colitis.” You can still make plans. You can still dream big. You can still have adventures. You might have some extra things to think about along the way — but you don't have to let IBD define what you can do. Your diagnosis is part of your story. It isn't the whole story. 💛 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Medication Do I still need to take medication if I feel fine? Find out why treatment may still be important when you feel well, what your medicine is doing, and what to do if you forget a dose, have side effects or want to stop taking it. When you're feeling good, taking your medicine might be the last thing you want to think about . You might wonder: “If I feel fine, why do I still need it?” It can seem strange to take medicine when you don't have tummy pain, you're going to the toilet normally and you're getting on with life. But with IBD, feeling well doesn't always mean there is no inflammation in your gut. That's one of the reasons your healthcare team may ask you to keep taking your medicine even when you feel great. 😊 Feeling well is a good thing! First of all — if you're feeling well, that's fantastic. It might mean your treatment is helping control your IBD. You might be: Going to the toilet normally for you Eating well Getting your energy back Going to school Playing sport Hanging out with friends Doing all the things you enjoy This is exactly what your IBD team wants for you. But your medicine may be helping keep you well . 🔥 What about inflammation? IBD causes inflammation in your digestive system. Sometimes inflammation can be happening even when you don't notice many symptoms. You might feel completely normal while your healthcare team can still see signs of inflammation in tests. That's why you might have regular: Blood tests Poo tests, such as faecal calprotectin Scans Endoscopies or colonoscopies These tests can give your doctors more information about what's happening inside your body. 💊 Your medicine isn't only for when you're sick Some IBD medicines are used to keep inflammation under control and help prevent symptoms from coming back . Think of it a bit like maintaining something that is working well. If your medicine is helping keep your IBD under control, stopping it suddenly can allow inflammation to become active again. That could lead to another flare. This is why your healthcare team might tell you to keep taking your medicine even when you feel completely fine. 🤔 What if I forget a dose? Don't panic. Everyone forgets things sometimes. What you should do depends on which medicine you're taking . Check the instructions you've been given or ask your parent, carer, pharmacist or IBD team what to do. Don't take extra medicine to make up for a missed dose unless your healthcare team tells you to. It can help to find a routine that makes remembering easier. You could: Take your medicine at the same time each day Set an alarm on your phone Use a medication reminder Keep it somewhere appropriate where you'll remember it Ask a parent or carer to remind you Link it to something you already do every day As you get older, you'll probably become more responsible for remembering your own medicines. It's okay to get help while you're learning. 😕 What if I don't like taking my medicine? You're allowed to feel frustrated about it. Taking medicine every day can be annoying. You might hate the taste. You might find tablets difficult to swallow. You might get tired of having to remember it. You might simply think: “Why do I have to keep doing this?” If you're struggling with your medicine, tell someone . Your IBD team may be able to help. There may be different ways of taking your medicine or different treatment options, depending on your IBD and what your doctor thinks is appropriate. ⚠️ What if I want to stop? Don't stop your IBD medicine on your own. Even if you've been feeling amazing for months, talk to your IBD team first. They can look at your symptoms, test results and overall health and decide whether your treatment needs to change. Stopping or changing medication without medical advice can increase the risk of your IBD becoming active again. 🩺 Why do I need appointments if I feel fine? You might wonder why you still need to see your IBD team when everything seems okay. Appointments aren't just for when you're sick. Your healthcare team also wants to make sure you're: Growing well Getting enough nutrients Feeling well Managing your medication Keeping inflammation under control Not developing problems you can't feel yet These check-ups help your team make sure your treatment is still working for you. 💬 What if my medicine gives me side effects? Tell your parent, carer or healthcare team. You don't have to put up with side effects without telling anyone. Your doctor may be able to change your treatment, adjust the timing or investigate what's causing the problem. Don't stop taking your medicine because of side effects without talking to your healthcare team first , unless you've been given specific instructions to do so. If you're having a severe or unexpected reaction, get medical advice promptly. 🧑🤝🧑 It's okay to ask for help Taking responsibility for your medicine is something you'll gradually learn. Your parent or carer might remind you now. Later, you might manage your own medicines. Neither is better or worse. The important thing is that you have a system that helps you take your medicine safely. 🌟 Your medicine should fit into your life Your medicine is only one part of your life . You shouldn't have to spend every day thinking about your IBD. Once you've found a routine that works, taking your medicine can become just another part of your day — like brushing your teeth or packing your school bag. And then you can get on with being you . 💛 Remember Feeling well is something to celebrate. But with IBD, feeling well doesn't always mean the inflammation has completely gone . Your medicine may be helping to keep your IBD under control and prevent another flare. So even when you're feeling great: Keep taking your medicine as prescribed. Keep going to your appointments. Tell your healthcare team if something changes. And if you're wondering whether you still need your medicine, ask them . Never be afraid to ask questions about your treatment. Looking after your IBD when you feel well is one of the ways you help yourself stay well. 💛 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

School Going on a school camp with IBD Find out how to prepare for camp, plan for toilet access, medicines, food and fatigue, talk to teachers, handle unexpected symptoms. Going on a school camp can be exciting — but if you have IBD, you might have a few extra things on your mind. You might be wondering: “What if I need the toilet?” “What if I get sick while I'm away?” “Who will know about my IBD?” “What if I need my medicine?” “What if I have an accident?” These are all completely reasonable things to think about. Having IBD doesn't automatically mean you can't go on camp. With some planning and the right support, you can still have a great time. 🏕️ Start planning early Don't leave everything until the night before. Talk to your parent or carer, your school and your IBD team well before camp. Together, you can work out what support you might need and make a plan for anything that could be difficult. Your plan might include: Who at school knows about your IBD Who you can go to if you feel unwell How you'll access the toilet Where your medicines will be kept What happens if you need medicine during the day What to do if you need to go home How you'll manage food and drinks What to do if your symptoms suddenly get worse Having a plan doesn't mean something will go wrong. It means you'll know what to do if something does happen . 🚽 Know your toilet situation This is one of the biggest worries for many people with IBD. Before camp, find out: Where the toilets are How far they are from your accommodation Whether you'll have access to a toilet during activities What happens if you need to go urgently Whether you'll be able to use a toilet at night If you're worried about not making it to the toilet, tell a teacher. You shouldn't have to wait or ask in front of everyone if you urgently need to go. Your school can help make sure you have a way to get to a toilet quickly. 🎒 Pack your IBD essentials Having the things you need with you can make you feel much more confident. Depending on your symptoms and what works for you, you might pack: Spare underwear Spare clothes Tissues or toilet paper Gentle wipes A waterproof bag for dirty clothes Your water bottle Any medicines you need Snacks you know you can tolerate Period products, if you need them Anything else that makes you feel comfortable You don't have to tell everyone what's inside your bag. It's simply your “just in case” kit . 💊 Don't forget your medicines Make sure your medicines are organised before you leave. Talk with your parent, carer and school about: Which medicines you need When you need to take them Who will look after them How you'll take them privately What happens if you forget a dose Don't change or skip your medicines just because you're going on camp. Your school and parent/carer should know what to do if there is a problem with your medication. 🍎 What about food? Camp food can sometimes feel stressful if you have foods that don't agree with you. Before camp, talk to your parent, school and, if needed, the camp organisers about what you'll be eating. You might need to: Let the camp know about your dietary needs Take some familiar snacks Know what food options will be available Have a plan for meals if you're having symptoms You don't need to follow a completely different diet just because you're going on camp. The important thing is having access to food and drinks that work for you . 💧 Keep drinking Being active, travelling and spending time outdoors can make it easy to forget to drink. Take your water bottle with you and drink regularly. If you've recently had diarrhoea or have been told by your healthcare team to use oral rehydration fluids, make sure you know what your individual plan is before you go. 😴 You might need more rest Camps can be exhausting. There might be early mornings, late nights, lots of walking and activities all day. If you're recovering from a flare, you might not have the same energy as everyone else. That's okay. You might need to: Take a break Sit out of an activity Go to bed earlier Rest during the day Take things at your own pace You don't have to do everything. Going on camp isn't a competition. 🏃 What about activities? Having IBD doesn't necessarily mean you have to sit out of camp activities. You may be able to join in with most or all activities when you're feeling well. If you're recovering from a flare or have been told to limit certain activities, your healthcare team can help you understand what's appropriate. Tell a teacher if you're struggling. You don't need to push yourself just because everyone else is carrying on. 💬 Who needs to know? You don't have to tell your whole class about your IBD. But it is important that the right adults know . Your parent or carer can talk to the school before camp and make sure the teachers or staff responsible for you understand: That you have IBD What your symptoms can look like Your toilet needs Your medication plan What to do if you become unwell Who to contact if there is a problem You can also decide how much you want your friends to know. If someone asks why you need to leave suddenly, you can simply say: “I need to go to the toilet.” You don't owe anyone a detailed explanation. 😟 What if I'm worried about having an accident? This can be one of the hardest worries to talk about. But remember: having an accident would not be your fault. Preparing a spare set of clothes can help you feel more confident. You could also make a plan with a trusted teacher about what you'll do if it happens. The goal isn't to expect an accident. It's to know that you'll be okay if one happens . 📱 Have someone you can contact Being away from home can feel harder when you're not feeling well. Before camp, find out who you can contact if you're worried or unwell. You might have: A teacher you're comfortable talking to Your parent or carer Another trusted adult An agreed way to contact home Knowing you can reach someone can make being away from home feel much easier. 🩺 What if I start feeling unwell? Tell an adult early. Don't try to hide your symptoms because you're worried about missing out. Tell someone if you notice things like: Increasing tummy pain More frequent diarrhoea Blood in your poo Feeling very tired or weak Feeling dizzy Vomiting A fever or feeling generally unwell Your teachers aren't there to judge you. They're there to help keep you safe. 💛 You don't have to be embarrassed IBD can sometimes involve things that feel embarrassing — especially when you're surrounded by classmates. But needing the toilet more often, taking medicine or needing extra support doesn't make you weird. You have a medical condition. It's not your fault. The people around you don't need to know every detail. You just need the right people to know enough to support you. 🌟 You can still have fun Try not to spend the whole camp worrying about what might happen. You could miss out on an amazing experience if you spend every moment thinking about your IBD. You've planned ahead. You've packed what you need. The adults know how to support you. Now try to enjoy yourself. Get involved when you can. Laugh with your friends. Try something new. Stay up talking in your cabin. Take photos. Make memories. And if you need a break, take one. 💛 Remember Having IBD might mean you need to plan a little more than some of your friends. That's okay. Planning doesn't mean you're different. It means you're prepared. Talk to your parent or carer and school early, make a plan that works for you, pack your essentials and know who you can turn to if something goes wrong. You deserve to enjoy camp just like everyone else. IBD is coming with you — but it doesn't have to stop you from having an adventure. 🏕️💛 🎒 Printable School Camp Packing Checklist Going on camp? Use this checklist to help you get organised. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Understanding IBD Could I have IBD? Learn about the common symptoms that may lead doctors to investigate Crohn’s disease or ulcerative colitis. Maybe you've been having tummy problems for a while and you're wondering: “Could I have IBD?” You might have heard of Crohn's disease or ulcerative colitis, or maybe your doctor has mentioned that they want to investigate what's causing your symptoms. Having symptoms that can happen with IBD doesn't mean you have IBD . Lots of different things can cause tummy and bowel problems. But when symptoms keep happening, don't go away, or are affecting your everyday life, your doctor may want to find out what's going on. 🤔 What might make a doctor investigate IBD? There isn't one symptom that means someone has IBD. Doctors look at the whole picture — what symptoms you're having, how long you've had them, whether they're changing and how they're affecting you. Some symptoms that can happen with IBD include: 🤕 Tummy pain You might have tummy aches or pain that keeps coming back. It could feel different from one person to another. You might notice it before or after going to the toilet, or at different times during the day. Tummy pain has lots of possible causes, so having tummy pain on its own doesn't mean you have IBD. 🚽 Diarrhoea You might notice that your poo has become much looser or that you're going to the toilet more often than usual. Sometimes diarrhoea lasts for a short time because of an infection or something else. If it keeps happening or is becoming a regular problem, your doctor may want to investigate further. 🏃 Urgency Urgency means feeling like you really need to get to the toilet quickly . You might suddenly need to stop what you're doing and find a toilet. You might also feel like you can't wait very long once you get the urge to go. This can be particularly difficult at school or when you're out with friends. 🩸 Blood or mucus in your poo You might notice blood or mucus when you go to the toilet. Seeing blood in your poo can be scary, but try not to panic. There are different reasons this can happen, and it doesn't automatically mean you have IBD. It's still important to tell a parent, carer or doctor if you notice blood or mucus in your poo. 😴 Feeling really tired Everyone gets tired sometimes. But if you're feeling much more tired than usual , especially if it has been going on for a while, it's worth telling someone. IBD can sometimes cause tiredness because of inflammation, not eating enough, anaemia or other effects of being unwell. But tiredness can also have many other causes. 🍽️ Losing your appetite You might not feel as hungry as you normally do. You may find that you don't feel like eating meals or that you get full quickly. If you've noticed a big change in your appetite, tell your parent, carer or doctor. ⚖️ Losing weight without trying Sometimes children and teenagers with IBD lose weight because they're not eating enough, aren't absorbing nutrients properly or have ongoing inflammation. Your doctor may look at your growth and weight over time , rather than just one measurement. If you're losing weight without trying, it's important to let a doctor know. 🩺 What happens if your doctor is worried about IBD? If your symptoms suggest that something needs investigating, your doctor may start by asking you lots of questions. They might ask about: Your tummy and bowel symptoms How often you're going to the toilet How long you've had symptoms Your appetite Your energy levels Your weight and growth Whether anyone in your family has IBD or other conditions How your symptoms are affecting school and everyday life They may also arrange some tests. These could include blood tests, a poo test such as faecal calprotectin, scans or other investigations . If your doctor thinks you need to see a specialist, you may be referred to a paediatric gastroenterologist or IBD team. 🧪 Does having these symptoms mean I have IBD? No. This is really important. There are lots of reasons someone might have tummy pain, diarrhoea, tiredness or changes in their poo. An infection, constipation, food intolerance and many other conditions can cause similar symptoms. That's why doctors don't diagnose IBD based on symptoms alone. They put together information from your symptoms, examination, growth, blood and poo tests and, when needed, other investigations . 💬 What should I do if I'm worried? If you've noticed changes in your tummy or bowel habits that are worrying you, tell an adult you trust . You could say: “I've been having some tummy problems and I'm worried something isn't right.” You don't need to know what's causing your symptoms before asking for help. Your parent or carer can help you make an appointment with your doctor. It can also help to keep track of what's been happening — for example, when your symptoms started and whether they're getting better, worse or staying the same. 💛 Don't be scared to talk about poo Talking about poo, diarrhoea or needing the toilet urgently can feel embarrassing. But doctors and nurses talk about these things all the time . They need to know what's happening so they can work out what might be causing your symptoms. There are no silly or embarrassing questions. The more honestly you can explain what's happening, the easier it is for your healthcare team to help. 🌱 If you're being investigated for IBD Waiting for answers can be difficult. You might feel worried, frustrated or confused. You might also feel relieved that someone is finally taking your symptoms seriously. Whatever you're feeling is okay. And remember — being investigated for IBD doesn't mean you've been diagnosed with IBD . The important thing is that you're getting help to understand what's happening with your body. 💛 Remember You don't need to work out whether you have IBD by yourself. If something doesn't feel right, tell someone . Your doctor can help work out what might be causing your symptoms and whether you need any tests or further investigation. You know your body. It's okay to speak up when something doesn't feel right. 💛 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Flares What to eat during a flare Learn what foods may feel easier to tolerate, which foods might make symptoms worse, how to stay hydrated and why you don't need to follow a strict “IBD diet.” When you're having an IBD flare, eating can sometimes feel difficult. Your tummy might hurt. You might have diarrhoea. You might not feel hungry. And you might start wondering: “What am I actually supposed to eat?” You may have heard that certain foods are “bad for IBD” or that you need to follow a special diet during a flare. But here's something important to know: There isn't one flare diet that works for everyone with IBD. What feels comfortable for you might be completely different from what works for someone else. The goal during a flare is usually to keep getting enough food and fluids while making eating as comfortable as possible . 🍌 Choose foods that feel easier for you When your gut is irritated, you might find some foods easier to tolerate than others. Depending on your symptoms, you might prefer simple, familiar foods such as: Rice Pasta Bread or toast Potatoes without the skin Bananas Applesauce or stewed fruit Eggs Chicken Fish Smooth nut butter, if tolerated Yoghurt or other dairy foods, if you tolerate them Dairy-free alternatives if needed Soups Smooth foods These aren't special “IBD foods”. They're simply examples of foods some people find easier to eat when their gut isn't feeling great. You don't have to eat from this list if these foods don't work for you. 🍽️ Smaller meals might feel easier A huge plate of food can feel overwhelming when you're having tummy pain or don't have much appetite. You might find it easier to have: Smaller meals + regular snacks instead of trying to eat three large meals. For example: Breakfast → snack → lunch → snack → dinner → evening snack. This can help you keep getting energy and nutrients without having to eat a large amount at once. 💧 Don't forget about fluids If you're having frequent diarrhoea, you can lose a lot of fluid. Keep drinking regularly throughout the day rather than waiting until you're extremely thirsty. Water is usually a good choice. If you're losing a lot of fluid through diarrhoea or vomiting, your healthcare team may recommend an oral rehydration solution , which contains water, salts and glucose in the right amounts to help replace what you've lost. Follow the advice you've been given by your healthcare team. If you can't keep fluids down or you're showing signs of dehydration, tell an adult and get medical advice. 🌽 What about fibre? Fibre is normally an important part of a healthy diet. But during a flare, some high-fibre foods may make symptoms such as diarrhoea, cramping or urgency feel worse for some people . You might temporarily find foods such as these harder to tolerate: Raw vegetables Fruit skins Large salads Wholegrain breads and cereals Nuts Seeds Popcorn Corn Beans and legumes That doesn't mean these foods are bad for IBD. And it doesn't mean you should stop eating them forever. If your healthcare team or dietitian recommends reducing fibre during a flare, they can help you work out what to eat instead and when to start adding foods back. If you have a narrowing in your bowel called a stricture , you may have specific advice about fibre from your IBD team. Follow your individual plan. 🌶️ What about spicy or fatty foods? Some people notice that certain foods make their symptoms feel worse during a flare. These might include: Very spicy foods Fried or greasy foods Very fatty meals Large amounts of caffeine Fizzy drinks But these foods don't affect everyone in the same way . If something clearly makes your diarrhoea, urgency or tummy pain worse, you might choose to have less of it while you're unwell. That doesn't necessarily mean the food caused your flare. 🥛 Do I need to stop dairy? Not automatically. Some people find dairy harder to tolerate when their gut is inflamed, particularly if it causes more bloating, diarrhoea or discomfort. Other people with IBD can eat dairy without any problems. Dairy foods can also provide important nutrients such as calcium, protein and vitamin D . So don't cut out dairy just because you have IBD. If dairy seems to be causing problems, talk to your parent, carer, IBD team or dietitian about alternatives so you're still getting the nutrition you need. 🚫 Foods aren't “good” or “bad” It can be tempting to think: “I ate something bad and caused my flare.” Try not to blame yourself. IBD is an inflammatory disease, and flares are complicated. Eating pizza, chocolate or something spicy doesn't mean you caused your IBD to become active. A particular food might make your symptoms feel worse , but that's different from saying it caused the inflammation. Learning the difference can help you avoid becoming frightened of food. 🥤 What if I don't feel like eating? Losing your appetite can happen during a flare. But your body still needs energy and nutrients — especially while you're growing. If full meals feel impossible, you might find it easier to try: Small snacks Smoothies, if tolerated Soups Soft foods Nourishing drinks recommended by your healthcare team Smaller portions more often If you're hardly eating, losing weight or struggling to get enough nutrition, tell your parent, carer or IBD team . Don't wait until you've lost a lot of weight to mention it. 🧃 What about nutrition drinks? Sometimes children and teenagers with IBD need extra nutrition. Your dietitian or IBD team might recommend special nutritional drinks or, for some people with Crohn's disease, a treatment called exclusive enteral nutrition (EEN) . EEN is a special liquid nutrition treatment that may be used to help treat active Crohn's disease. It's very different from simply drinking a supermarket protein shake. If your healthcare team recommends nutritional treatment, they'll explain exactly what you need and how long you'll need it. 📱 Should I track what I'm eating? Sometimes it can help to notice patterns. You could write down: What I ate: ______ How I felt afterwards: ______ Symptoms: ______ But don't become obsessed with tracking every bite. Your symptoms can change for lots of reasons, and feeling worse after eating something once doesn't automatically mean you can never eat it again. If you're starting to become worried or frightened about food, tell someone. ⚠️ Don't cut out lots of foods on your own This is especially important when you're still growing. Removing lots of foods from your diet can make it harder to get enough: Energy Protein Iron Calcium Vitamins Minerals If you think certain foods are causing problems, talk to your IBD team or an IBD/paediatric dietitian . They can help you make changes without missing out on important nutrition. 🧑🍳 Make your own “flare foods” list Over time, you might learn which foods feel easiest for your body when you're having symptoms. Your list might look something like: Foods I usually tolerate well: Foods that sometimes make my symptoms worse during a flare: You can keep this list somewhere handy or share it with your parent or carer. Remember, your list can change. Something you don't tolerate during a flare might be completely fine again when you're feeling well. 🌱 When you're starting to feel better As your flare settles, you may be able to gradually return to your usual foods. You don't necessarily need to stay on a restricted diet once you're feeling better. Your IBD team or dietitian can help if you're unsure about adding foods back. The goal isn't to eat the smallest number of foods possible. The goal is to have a varied, nourishing diet that supports your health and growth whenever you can. 💛 Remember Food during an IBD flare doesn't need to be perfect. Focus on: Eating what you can tolerate. Drinking enough. Having smaller meals if they're easier. Getting enough nutrition to support your body. Talking to your healthcare team if eating becomes difficult. And most importantly: Don't blame yourself or your food for having a flare. Your body is dealing with inflammation, and it may need a little extra care while things settle down. Your IBD team and dietitian can help you find what works best for you . 💛 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Tests & Procedures What is a colonoscopy? What is a colonoscopy? Find out why you might need one, what to expect before, during and after the procedure, including bowel prep, anaesthesia, biopsies, waking up and getting your results. If your doctor thinks you might have IBD, you may hear the word colonoscopy . A colonoscopy is a test that lets your healthcare team look at the inside of your large intestine (colon) and the very end of your small intestine. It can help doctors understand what's happening inside your gut and look for signs of inflammation. If you've never had one before, you might have lots of questions. “What actually happens?” “Will it hurt?” “Will I be awake?” “What if I'm embarrassed?” Let's go through it step by step. 🔎 What happens during a colonoscopy? A doctor uses a long, thin, flexible tube called a colonoscope . It has a tiny camera and light at the end. The colonoscope allows the doctor to see the lining of your bowel on a screen. It can help them look for things such as inflammation, ulcers or other changes. You won't be watching the procedure yourself. 🥤 The bowel prep Before a colonoscopy, your bowel needs to be empty so your doctor can see properly. This means you'll need to take special medicine called bowel preparation . You'll usually start this at home before your procedure. It makes you poo a lot — often several times — until your bowel is empty. You may need to spend quite a bit of time near the toilet. Your healthcare team will give you instructions about exactly what to eat, drink and take before your colonoscopy. 💡 Tip The bowel prep can be one of the hardest parts of the whole experience. Make yourself as comfortable as possible. You could: Stay somewhere close to the toilet Have your favourite show or music ready Wear comfortable clothes Keep plenty of toilet paper nearby Ask your parent or carer to stay close Follow your hospital's instructions about drinking fluids If you're struggling with the bowel prep or can't keep it down, tell your parent or carer and contact your healthcare team for advice. 🏥 Arriving at hospital On the day of your colonoscopy, you'll go to the hospital or clinic. A nurse will check you in and talk you through what is going to happen. You may have your blood pressure, heart rate and temperature checked. You'll usually change into a hospital gown. You can ask questions at any point. You don't have to be brave and stay quiet if you're worried. Tell the nurses or doctors how you're feeling. 😴 Will I be awake? For children and teenagers, colonoscopies are generally done with anaesthesia or sedation , so you won't be awake in the usual way during the procedure. Your healthcare team will explain what type you'll have and what to expect. You'll be monitored throughout the procedure. You won't be expected to simply lie there awake while the colonoscopy happens. 🔎 The actual colonoscopy Once you're asleep or appropriately sedated, the doctor carefully passes the colonoscope through the bottom and into the large intestine. The camera lets them see the lining of your bowel. The procedure itself usually takes around 20–45 minutes , although the whole hospital visit will take longer. The exact time can vary. 🔬 What about biopsies? During the colonoscopy, your doctor may take some tiny tissue samples , called biopsies. These are sent to a laboratory so they can be examined under a microscope. You won't feel the biopsies being taken while you're under anaesthesia or sedation. Your doctor may take biopsies even if everything looks normal. That's because looking at the tissue under a microscope can give doctors information that they can't see just by looking at the bowel. 🌤️ Waking up After the procedure, you'll wake up in a recovery area. You might feel: Sleepy A little groggy Bloated Gassy A little uncomfortable You may also have a sore throat if you had an upper endoscopy at the same time. Your parent or carer can usually be with you once you're awake and settled. You'll be monitored for a while before you're ready to go home. 🍌 What can I eat afterwards? Your healthcare team will tell you when you're ready to eat and drink. Many people start with drinks and then have something light to eat. You may feel hungry after not eating normally before the procedure! Follow the instructions your hospital gives you. 🚗 Going home Most children and teenagers can go home on the same day after a colonoscopy. Because you've had anaesthesia or sedation, you'll need an adult to take you home and stay with you as instructed by your healthcare team. You might feel tired for the rest of the day. It's usually a good idea to have a quiet day and give your body time to recover. 💬 When will I get my results? Sometimes your doctor can tell you what they saw during the colonoscopy soon afterwards. But the biopsy results take longer because the tissue needs to be examined in a laboratory. Your doctor will explain when and how you'll get your results. Try not to panic if you don't get an answer immediately. Waiting for results can be frustrating, but it doesn't mean something is wrong. 😳 What if I'm embarrassed? This is a really common worry. You might feel embarrassed about having doctors examine an area of your body that you normally keep private. But remember: Healthcare professionals do this because it's their job. They've seen it all before. They're focused on keeping you safe and finding out what's happening with your health. You won't be expected to feel completely comfortable with everything. It's okay to feel awkward. 😟 What if I'm scared? Being nervous about a colonoscopy is completely normal. You can tell your doctor or nurse: “I'm really nervous.” They can explain things again and help you understand what's going to happen. You can also ask your parent or carer to stay with you as much as possible. Some people find it helpful to: Bring headphones Listen to music Watch something on their phone Ask lots of questions Take a favourite comfort item Practise slow breathing Focus on what you'll do afterwards And remember — you don't have to pretend you're not scared. ❓ Questions you can ask your healthcare team Before your colonoscopy, you might want to ask: “What type of anaesthetic or sedation will I have?” “How long will I be at hospital?” “What can I eat and drink beforehand?” “What will the bowel prep be like?” “When can I go back to school?” “When will I get my results?” “Can my parent or carer stay with me?” There are no silly questions. 💛 Remember A colonoscopy can sound pretty scary when you've never had one before. But you won't be expected to figure it all out yourself. Your healthcare team will explain what is happening and look after you throughout the process. The hardest part might be the bowel prep and waiting for the appointment , rather than the procedure itself. And once it's over, you can go home, rest and get back to your normal routine. It's one test that can help your doctors understand what's happening inside your body. You've got this. 💛 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Tests & Procedures What tests might I need? Find out what to expect from blood tests, poo tests, ultrasounds, MRI/MRE scans, endoscopies and biopsies — explained simply, so you know what might happen and why. What tests might I need? 🩺 If you've been having tummy or bowel problems, your doctor might want to do some tests to find out what's going on. If your doctor is investigating whether you could have IBD, you might have blood tests, poo tests, scans or other tests . That might sound a little scary, especially if you've never had these tests before. But knowing what to expect can make things feel much easier. And remember — having tests doesn't mean you have IBD . Your healthcare team uses the results, along with your symptoms and other information, to work out what might be happening. 🩸 Blood tests Blood tests can give your doctor information about what's happening inside your body. They may check things such as: Signs of inflammation Your iron levels Whether you have anaemia Your blood count Your vitamin and nutrient levels How your body is functioning overall What happens? A nurse or doctor will use a small needle to take some blood from your arm. You might feel a quick pinch or sting , but it usually doesn't take very long. If you're nervous about needles, tell the person doing the test. They're used to helping people who don't like needles and can talk you through what's happening. 💩 Poo tests Yes — sometimes your doctor will ask you to collect a poo sample. It might sound embarrassing, but this is a really useful test. One test you might hear about is faecal calprotectin . Calprotectin is a substance that can increase when there is inflammation in your intestines. A poo test can help your doctor work out whether there might be inflammation in your gut. What happens? You'll usually collect a small sample of poo using a special container or collection kit. You don't need to worry about anyone looking at your poo. The laboratory checks the sample and sends the results back to your doctor. It doesn't hurt at all. 🩻 Scans Sometimes your healthcare team might want to take pictures of your digestive system. Different types of scans can show different parts of your body. You might have a: Ultrasound An ultrasound uses sound waves to create pictures of what's happening inside your body. A healthcare professional puts some gel on your tummy and moves a small device called a transducer over your skin. It doesn't hurt. MRI or MRE You might also have an MRI or an MRE (magnetic resonance enterography) . These use a large magnet and radio waves to create detailed pictures. You lie on a bed that moves into a large scanner. An MRE is designed to give doctors a detailed look at your small intestine. An MRI doesn't use X-rays. Some people find the scanner noisy or don't like being in an enclosed space, so tell your healthcare team if you're worried. They can explain exactly what will happen and help you prepare. 🔎 Endoscopy If your healthcare team needs to look closely at the inside of your digestive system, you may need an endoscopy. There are different types. A colonoscopy looks at the inside of your large intestine and the end of your small intestine. An upper endoscopy looks at the upper part of your digestive system, including your oesophagus, stomach and the beginning of your small intestine. You won't be awake for the procedure in the usual way. Children and teenagers are generally given sedation or anaesthesia so the procedure is comfortable. Your healthcare team will explain exactly what type of anaesthetic or sedation you'll have. 🔬 Biopsies During an endoscopy or colonoscopy, your doctor may take some tiny samples of tissue , called biopsies. This might sound worrying, but you won't feel the biopsies being taken while you're under anaesthesia or sedation. The samples are sent to a laboratory where they can be looked at under a microscope. This can give your doctors more information about what's happening in your digestive system. 🧪 Do I need all of these tests? Not necessarily. Everyone is different. You might only need some blood and poo tests. Someone else might need scans or an endoscopy. Your doctor will decide which tests are appropriate based on your symptoms, medical history, examination and previous test results. You don't need to have every test just because you're being investigated for IBD. 🤔 What if my test results are normal? A normal result doesn't mean that your symptoms aren't real. It can sometimes take more than one test — or more time — to work out what's causing symptoms. Your doctor will look at the whole picture , rather than relying on one test. If you're still having symptoms, keep talking to your healthcare team. 📋 What if my results are abnormal? An abnormal result doesn't automatically mean you have IBD either. Some tests can change for lots of different reasons. For example, inflammation can sometimes happen because of an infection or another condition. Your doctor will explain what your results mean and whether you need any more tests. 💬 Questions you can ask It's completely okay to ask questions before having a test. You could ask: “What is this test for?” “Will it hurt?” “How long will it take?” “Do I need to do anything before the test?” “Will I get the results straight away?” “What happens after the test?” If you're worried, tell your parent, carer, doctor or nurse. You don't have to pretend you're not scared. 💛 Tests can help you get answers Having tests can feel like a lot, especially when you're already not feeling well. But each test is another piece of information that can help your healthcare team understand what's happening. You don't have to understand every medical word or remember everything you're told. Ask questions. Take someone you trust with you when you can. And ask your doctor to explain anything you don't understand. 🌱 Remember A test is just a test. It doesn't define you, and it doesn't automatically mean you have IBD. Your healthcare team is trying to understand why you're feeling the way you do and work out what help you might need. It's okay to ask questions. It's okay to be nervous. And it's okay to ask for someone to explain things again. You deserve to understand what's happening with your body. 💛 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Food & Nutrition Why you might eat differently during a flare-up Understand why your appetite, food choices and eating habits might change during an IBD flare-up. When you have inflammatory bowel disease (IBD), you might notice that your eating habits change when you're having a flare. You may feel less hungry, get full more quickly, feel sick after eating, or find that foods you usually enjoy suddenly upset your tummy. If this happens to you, you're not alone. A flare can affect how your digestive system works, making eating feel different from when your IBD is under control. The important thing to remember is that your body still needs energy and nutrients, even when you're having a difficult time eating. There are ways to make eating more manageable while looking after your health. 🔥 What happens to your body during a flare? A flare happens when inflammation in your digestive system becomes more active. Depending on whether you have Crohn's disease or ulcerative colitis, you might experience symptoms such as: Tummy pain or cramps. Diarrhoea or needing to use the toilet more often. Feeling sick or being sick. Bloating and wind. Feeling tired or having less energy. Losing your appetite. Feeling full after eating only a small amount. These symptoms can make eating more difficult. You might worry that food will make your tummy hurt, or you might simply not feel like eating. Everyone experiences flares differently. You might have trouble eating certain foods, while someone else with IBD might experience completely different symptoms. 🍽️ Why might you eat differently during a flare? There are several reasons why your eating habits might change when your IBD symptoms get worse. Your appetite might decrease. Inflammation, pain, nausea and feeling generally unwell can make you less interested in food. You might feel full more quickly. You may find that you can't finish your usual meals or that eating a large amount feels uncomfortable. Some foods might be harder to tolerate. Foods that usually agree with you might cause more bloating, wind or diarrhoea during a flare. You might feel worried about eating. If you've experienced pain or urgently needed the toilet after a meal, you might start feeling nervous about eating again. Your body might need extra nutrition. Inflammation can increase your body's nutritional needs, while diarrhoea and reduced food intake can make it harder to get enough energy, protein, vitamins and minerals. These changes don't mean you've done anything wrong. They are reasons to give your body extra care and ask for help when you need it. 🥣 What foods might feel easier to eat? During a flare, you might find that certain foods feel more comfortable than others. There isn't one diet that works for everyone with IBD, so the best choices depend on your symptoms and individual needs. Some foods you might find easier to manage include: White rice, white pasta or white bread. Potatoes without the skin. Bananas or other fruit you tolerate well. Cooked, peeled vegetables. Eggs. Chicken, fish or tofu. Yoghurt or lactose-free alternatives, if tolerated. Soups and other soft foods. You might also find that smaller meals are easier than eating a large meal all at once. These are examples, not a list of foods you must eat. You don't need to switch to a low-fibre diet or avoid your usual foods unless your healthcare team recommends it. If you have a narrowing in your bowel, your team may give you specific advice about food textures and fibre. 💧 Why is drinking enough important? Diarrhoea and vomiting can cause your body to lose water and important salts called electrolytes. This means you might need to pay extra attention to staying hydrated during a flare. Try to drink fluids regularly throughout the day. Water is a good choice, and your healthcare team may recommend an oral rehydration solution if you're losing a lot of fluid. Signs of dehydration can include: Feeling very thirsty. Having a dry mouth. Passing less urine than usual. Having dark-coloured urine. Feeling dizzy or unusually weak. Tell your parent or carer if you're struggling to drink, and seek medical advice if you have signs of dehydration. Severe dehydration, fainting or being unable to keep fluids down needs urgent medical assessment. 💪 How can you get enough nutrients when eating is difficult? When you're having a flare, eating your usual meals might feel impossible. However, your body still needs energy and nutrients to grow, repair tissues and recover. Here are some ideas that might help. Try smaller, more frequent meals. Instead of eating three large meals, you might find it easier to have smaller meals and snacks throughout the day. Choose foods that give you energy. If you can only manage small amounts, foods that provide energy and protein can help you get more nutrition from what you eat. Keep easy options nearby. Having foods you know you tolerate well available can make eating less stressful when you're tired or feeling unwell. Don't force yourself to eat a large meal. Try smaller amounts more often, but let your parent or carer and healthcare team know if you're struggling to eat enough. Ask about extra nutritional support. Your dietitian may recommend nutritional drinks, supplements or other support if you're unable to get enough nutrients from food. If you're losing weight, feeling increasingly weak or struggling to eat for more than a short time, contact your IBD team rather than trying to manage it on your own. 🚫 Should you stop eating certain foods during a flare? Not necessarily. You might need to make temporary changes to what you eat, but cutting out lots of foods can make it harder to get the nutrients you need. For example, some people find that high-fibre foods increase discomfort during a flare. Others can continue eating them without problems. It's also important to understand that a food making your symptoms worse doesn't automatically mean it's increasing inflammation in your bowel. If you're thinking about removing a food group, following a special diet or making major changes to your meals, speak to your IBD team or dietitian first. They can help you find options that suit your symptoms while making sure you're getting enough nutrition. 🧠 What if you're scared to eat because of your symptoms? It's understandable to feel worried about eating when you don't know how your tummy will react. You might avoid food before school, worry about eating with friends or feel frustrated when you can't enjoy your favourite meals. If this happens, try to remember that you don't have to work everything out by yourself. You could: Tell a parent or carer how you're feeling. Talk to your IBD nurse or dietitian about foods that feel manageable. Plan meals and snacks around school or activities when possible. Ask for help if you're avoiding food because you're afraid of pain or needing the toilet. If fear of symptoms is stopping you from eating enough, your healthcare team can help you find ways to feel more comfortable and supported. 🩺 When should you ask for help? Contact your IBD team if: Your symptoms are getting worse. You're struggling to eat or drink enough. You're losing weight without meaning to. You're feeling unusually tired or weak. You're vomiting or having frequent diarrhoea. You're worried about your nutrition or growth. Seek urgent medical attention for severe or worsening tummy pain, significant bleeding, repeated vomiting, signs of severe dehydration or other symptoms that feel serious. You don't have to wait until things become unbearable before asking for help. 💚 Remember It's normal for your eating habits to change during an IBD flare. You might need smaller meals, different food textures or extra nutritional support until your symptoms improve. Try to focus on what you can manage rather than worrying about eating perfectly. Your needs may change as your symptoms change, and that's okay. Your body still deserves nourishment during a flare, and you deserve support to make eating as comfortable as possible. This article is for general information only and is not a substitute for medical advice. Everyone with IBD has different nutritional needs, especially during a flare. Speak to your IBD team or a qualified dietitian before making significant dietary changes. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Food & Nutrition Food and IBD: what kids and teens need to know Learn how food can affect IBD symptoms and discover ways to get the nutrients your body needs to grow and stay healthy. Food can sometimes feel complicated when you have inflammatory bowel disease (IBD). You might wonder what you should eat, whether certain foods can make your symptoms worse, or why your friends can eat things that don't always agree with you. The good news is that there is no single diet that works for everyone with IBD. Your body is unique, and what works for you might be different from what works for someone else. Understanding how food affects your body can help you feel more confident about eating, getting the nutrients you need and enjoying meals with family and friends. 🥗 What is the connection between food and IBD? Crohn's disease and ulcerative colitis are types of IBD that cause inflammation in your digestive system. Food doesn't cause IBD, and you haven't done anything wrong to develop it. However, what you eat can sometimes affect how you feel. Certain foods might make symptoms such as tummy pain, bloating, diarrhoea or wind worse, even when your inflammation hasn't increased. It's important to know that making your symptoms worse doesn't necessarily mean a food is causing inflammation or making your IBD worse. Your healthcare team can help you understand the difference. 🍎 Do I need to follow a special diet? Not everyone with IBD needs a special diet. Some people can eat a wide variety of foods, while others need to make changes depending on their symptoms, treatment or nutritional needs. Your diet may also change over time. You might be able to enjoy foods during remission (when your IBD is under control) that are harder to tolerate during a flare. If your healthcare team recommends a particular diet, they should explain why you need it and how to make sure you're still getting the nutrients your body needs. Don't feel that you have to follow a strict diet just because someone online says it helps IBD. Always speak to your IBD team or dietitian before making big changes to what you eat. 🍞 Why do some foods upset my tummy? Living with IBD can mean that your digestive system reacts differently to certain foods. For example: High-fibre foods, such as raw vegetables or wholegrains, might be harder to tolerate for some people during a flare. Fatty or fried foods might make diarrhoea or tummy discomfort worse. Spicy foods might trigger symptoms in some people. Milk and other dairy products can cause bloating, wind or diarrhoea if you have difficulty digesting lactose. Fizzy drinks might increase bloating or wind. But these foods don't cause problems for everyone! You might be able to eat them without any trouble, and that's completely normal. Try to notice how you feel after eating different foods rather than assuming that certain foods are automatically bad for you. 🔥 Does food cause IBD flares? Food doesn't cause Crohn's disease or ulcerative colitis, and avoiding particular foods won't necessarily prevent a flare. During a flare, inflammation in your digestive system can make eating and digesting food more difficult. You might notice that your appetite changes, you feel full quickly or certain foods don't agree with you. Your healthcare team might recommend temporarily changing the texture or type of food you eat to help you manage symptoms and maintain your nutrition. If your symptoms are getting worse, tell your parent or carer and contact your IBD team. Don't try to manage a flare by cutting out lots of foods or skipping meals. 💪 Why is nutrition so important when I have IBD? Your body is still growing, developing and changing, especially during your teenage years. It needs enough energy and nutrients to help you: Grow taller and develop normally. Build strong bones and muscles. Have energy for school, sports and everyday activities. Concentrate and learn. Repair body tissues and support your immune system. Recover from illness and treatment. IBD can sometimes make it harder for your body to absorb certain nutrients, and inflammation can increase your nutritional needs. Your healthcare team may check your growth, weight and blood tests to see whether you're getting what you need. If you have low levels of particular nutrients, they might recommend supplements or changes to your diet. 🥛 What if I can't eat certain foods? If a food regularly makes you feel unwell, it's worth discussing it with your parent or carer and your IBD team. Sometimes, you might need to change how you prepare a food or try a different version of it. For example, cooked vegetables might be easier to tolerate than raw ones, or lactose-free milk might suit you better than regular milk. However, cutting out whole food groups can make it harder to get enough nutrients, particularly when you're growing. Your dietitian can help you find alternatives so that you can still enjoy a varied diet and get the nutrition you need. 📝 Should I keep a food diary? A food diary can help you notice patterns between what you eat and how you feel. You could record: What you ate and drank. Any symptoms you noticed. When your symptoms started. Whether you were having a flare or feeling well. Any other things that might have affected how you felt, such as stress or poor sleep. You don't need to record every single thing you eat forever. A short diary can sometimes provide useful information for your dietitian or IBD team. Remember that one episode of tummy pain doesn't automatically mean a food caused it. IBD symptoms can have lots of different causes. 🍽️ What if eating feels stressful? It's understandable if food sometimes makes you feel worried, especially when you don't know whether something will upset your tummy. You might feel nervous about eating before school, going out for a meal or trying something new. You might also feel frustrated when you have to think about food more than your friends do. Here are a few things that might help: Eat foods you know you tolerate well when you need to feel comfortable. Plan ahead for school trips, parties or days out. Ask your parent or carer to help you find foods that work for you. Talk to your IBD team if worrying about food is affecting your life. Remember that you don't have to explain your food choices to everyone. If food worries are making you skip meals, avoid social activities or feel frightened about eating, let someone you trust know. Your healthcare team can help you find support. 🧑🤝🧑 What about eating with friends? Having IBD doesn't mean you have to miss out on meals, parties, sleepovers or going out with friends. You might need to plan a little more than other people, but there are ways to make eating out easier. You could check a menu beforehand, bring a snack you know you tolerate or ask whether a restaurant can make a small change to a meal. You also don't have to tell everyone about your IBD if you don't want to. You can simply say that certain foods don't agree with you. Most importantly, food should be about more than managing symptoms. It's also about enjoying yourself, sharing experiences and spending time with people you care about. 🩺 When should I ask for help? Talk to your parent or carer, IBD nurse, doctor or dietitian if: You are losing weight without meaning to. You aren't growing as expected. You feel tired or weak a lot of the time. You are struggling to eat enough. Lots of foods seem to upset your tummy. You're worried about eating or avoiding more and more foods. You want to try a special diet or take nutritional supplements. Your IBD team can help work out what's happening and find a plan that suits your needs. 💚 Remember You don't need to eat perfectly to manage IBD. There isn't one magic food that will cure it, and you don't have to avoid every food that might trigger a symptom. Learning what works for your body, getting enough nutrition and asking for help when you need it can make eating feel less stressful. You deserve to enjoy food, feel good about eating and have the energy to do the things you love. This article is for general information only and is not a substitute for medical advice. Every child and teen with IBD is different, and dietary needs can vary. Always speak to your IBD team or a qualified dietitian before making significant changes to your diet or taking nutritional supplements. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. 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Living with IBD Tips for travelling with IBD Learn how to prepare your medicines, plan for toilets, pack an IBD travel kit, manage food and fluids, and know what to do if you become unwell while you're away. Going on holiday or travelling somewhere new can be really exciting. But if you have IBD, you might have a few extra things to think about. You might be wondering: “What if I need the toilet on the plane?” “What if I get sick while I'm away?” “What if I forget my medicine?” “What if the food is different?” “What if I have a flare?” Planning ahead can help you feel more confident — and make it easier to focus on having fun. ✈️ Plan before you go Don't wait until the night before you leave. Talk to your parent or carer and your IBD team about your trip. Depending on where you're going and how long you'll be away, you might need to think about: Your medicines How you'll access medical care Toilets during the journey Food and drinks Travel insurance Vaccinations or travel health advice What you'll do if you become unwell How you'll manage your medicine while travelling If you're travelling overseas, your healthcare team can help you work out what you need before you leave. 💊 Make a medicine plan Your medicines are one of the most important things to organise before you travel. Make sure you know: Which medicines you need When you need to take them How much you'll need for the trip Where they'll be stored What you'll do if you lose them What you'll do if you miss a dose Don't put all your medication in your checked luggage when flying. Ask your parent or carer and healthcare team about the best way to carry and store your medicines. If you need to keep a medicine cold, make sure you know how to do that while travelling. It's also a good idea to have your medicines in their original packaging and carry any documents your healthcare team recommends for travelling with them. 🎒 Pack an IBD travel kit Having a small bag with the things you might need can make travelling much less stressful. You could pack: ☐ Spare underwear ☐ Spare clothes ☐ Tissues or toilet paper ☐ Gentle wipes ☐ Waterproof bag for dirty clothes ☐ Water bottle ☐ Snacks you know you tolerate ☐ Your medicines ☐ Any other health supplies you normally need Keep your essentials somewhere you can easily reach them. You don't want to unpack your entire suitcase just to find a spare pair of underwear! 🚽 Know where the toilets are If you're worried about needing the toilet urgently, knowing where the toilets are can make you feel much more relaxed. Before travelling, think about where you'll find toilets: At the airport On the plane At train stations At rest stops At restaurants At attractions At your accommodation If you're travelling by car, plan regular toilet stops. And if you suddenly need to go, tell someone straight away . You don't need to wait until you're desperate. ✈️ Flying with IBD Flying can feel a little stressful if you have urgency or frequent bowel movements. If you're worried, tell your parent or carer before you travel so you can make a plan together. You might want to: Use the toilet before boarding Keep your IBD kit in your carry-on bag Keep your medicines with you as advised Know where the toilets are on the plane Wear comfortable clothes Bring something to distract yourself, such as headphones or a book If you need to use the toilet during the flight, that's okay . You don't need to feel embarrassed. 🚗 Road trips Road trips can actually be easier when you have control over where you stop. Before you leave, work out where some toilets are along the route. Your family might use a map or travel app to find rest stops. Keep your IBD kit somewhere you can reach easily rather than buried underneath everyone's luggage. And if you need a toilet stop, say so . You don't need to wait until the next planned stop if you urgently need to go. 🍎 What about food? Travelling can mean eating different foods or eating at different times. You don't necessarily need to avoid unfamiliar foods just because you have IBD. But if you're worried about how you'll feel, bring a few familiar snacks that you know you tolerate. You might also want to: Check what food will be available Let your accommodation know about dietary needs Bring safe or familiar options Keep snacks with you during long journeys Drink regularly Remember, there isn't one food that causes IBD. If you're unsure about food while travelling, ask your parent, dietitian or IBD team for advice. 💧 Keep drinking Travelling can make it easy to forget to drink. Air travel, hot weather, exercise and diarrhoea can all increase your need for fluids. Keep your water bottle with you where practical and drink regularly. If your healthcare team has recommended oral rehydration fluids for you, make sure you know how to use them before you travel. 🏖️ What if I'm travelling somewhere hot? Hot weather can make you lose more fluid through sweating. If you're somewhere hot: Drink regularly Take breaks in the shade Wear a hat Use sunscreen Don't push yourself if you're feeling unwell If you're having diarrhoea as well, you may need to be extra careful about staying hydrated. Tell an adult if you're feeling dizzy, weak or unusually tired. 🩺 What if I have a flare while travelling? This is one of the biggest worries for people with IBD. But having a plan can make it much less scary. Before you leave, make sure you know: Who will we contact? Where is the nearest medical centre or hospital? What does my IBD team want me to do if my symptoms get worse? What symptoms mean I need urgent help? You might also want to have your IBD team's contact details with you. If you start having symptoms, tell your parent or carer early . Don't try to hide it because you're worried about ruining the holiday. 🚩 When should I get medical help? Tell an adult straight away if you become seriously unwell. You may need urgent medical attention if you have: Severe or worsening tummy pain Significant bleeding Repeated vomiting Severe dehydration Fainting A high fever or feeling seriously unwell If you're overseas, your parent or carer can help you access local medical care. 🧑🤝🧑 What if I'm travelling without my parents? As you get older, you might travel with: School Friends A sports team Another family A youth group Before you go, make sure the adults responsible for you know enough about your IBD to keep you safe. They should know: What medicines you take When you take them What your symptoms can look like Your toilet needs What to do if you become unwell Who to contact in an emergency You don't need to explain your IBD to everyone in the group. You just need the right adults to know. 🌍 Don't let IBD stop you exploring It's understandable to worry about travelling when you have IBD. But being prepared can give you more freedom — not less. You can still: 🌴 Go on holidays ✈️ Fly to another country 🚗 Go on road trips 🏕️ Go camping 🏖️ Swim at the beach 🏙️ Explore new cities 🎢 Visit theme parks ⛰️ Go on adventures You might need to plan around your IBD sometimes. That's okay. Planning ahead doesn't mean you can't be spontaneous. It just means you have a backup plan if you need one. 💛 If you're nervous It's okay to be nervous before travelling. Try to focus on the things you can control. You can pack your essentials. You can know where the toilets are. You can make a medicine plan. You can tell someone if you feel unwell. You can ask for help. You don't have to know exactly what will happen every minute of the trip. 🎒 Your quick travel checklist Before you leave, check: ☐ I have enough medication for my trip ☐ I know when to take my medication ☐ My medicines are packed safely ☐ I have my IBD travel kit ☐ I have spare underwear and clothes ☐ I have tissues/wipes ☐ I have snacks I tolerate ☐ I know where I can find toilets ☐ I have a water bottle ☐ My parent/carer knows what I need ☐ I know who to contact if I become unwell ☐ I know what to do if my symptoms get worse 🌟 Remember Having IBD might mean you need to do a little more planning before you travel. But planning isn't the same as missing out . The more prepared you are, the more you can concentrate on the fun stuff. See somewhere new. Try something different. Spend time with the people you love. Make memories. And if your IBD gets in the way sometimes, that's okay too. IBD can come along for the journey — but it doesn't have to decide where you go. 💛 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Food & Nutrition What can I eat when my tummy is playing up? Discover foods that may feel easier to eat when your tummy is upset and your IBD symptoms are bothering you. When you have inflammatory bowel disease (IBD), there might be days when your tummy feels unsettled, you're running to the toilet more often, or you just don't feel like eating. Foods you usually enjoy might suddenly feel harder to manage, and you might wonder what you can eat without making things worse. The good news is that there are ways to make eating feel more comfortable when your symptoms are bothering you. There isn't one perfect list of foods for everyone with IBD, so the aim is to find options that work for your body while still getting the energy and nutrients you need. 🤔 Why might eating feel different? When your IBD symptoms are acting up, inflammation and changes in how your digestive system works can make eating more difficult. You might notice: Tummy pain or cramps after eating. Diarrhoea or needing the toilet more often. Bloating or wind. Feeling sick or getting full quickly. Having less appetite than usual. Sometimes, certain foods can make these symptoms feel worse, even if they aren't increasing inflammation in your bowel. Everyone has different triggers, and what works for someone else might not work for you. If your symptoms are new, getting worse or lasting longer than usual, tell your parent or carer and contact your IBD team. 🍚 Foods that might feel easier on your tummy When your tummy is unsettled, you might find that softer, simpler foods are easier to manage. Some people also find lower-fibre options more comfortable during a flare-up. Here are a few foods you could try if you tolerate them: 🍚 Rice, pasta and bread White rice, plain pasta, toast and white bread can provide energy and may feel easier to digest than higher-fibre alternatives for some people. 🍌 Gentle fruit options Bananas, applesauce and soft, peeled fruit may be easier to tolerate than some raw fruits with skins or lots of seeds. 🥕 Soft, cooked vegetables Well-cooked carrots, peeled potatoes and pumpkin may feel more comfortable than raw or crunchy vegetables. 🥚 Eggs and other protein foods Eggs, tender chicken, fish or tofu can help provide protein to support growth and repair. Choose preparations you find comfortable. 🥣 Soups and soft meals A smooth soup or a soft meal might be easier to manage when you don't feel like eating much. Choose ingredients you tolerate and make sure you're getting enough nourishment. These are suggestions, not rules. You don't need to switch to a bland diet if your usual foods are comfortable, and you shouldn't force yourself to eat something that makes you feel worse. If you have a narrowing in your bowel, ask your IBD team which foods and textures are safe for you. 🍽️ Should I eat smaller meals? You might find that eating smaller amounts more often feels easier than having three large meals. For example, instead of eating one big lunch, you could have a small sandwich, then a snack a little later if you're hungry. You could also try: Eating slowly and taking your time. Having snacks available for when you feel ready to eat. Choosing foods you know you tolerate well. Avoiding very large meals if they make you uncomfortable. You still need enough energy and nutrients, especially while you're growing. If you're struggling to eat enough, your parent or carer and dietitian can help you work out what might make eating easier. 💧 What should I drink when my tummy is upset? If you're having diarrhoea, your body can lose a lot of water and important salts. Drinking enough is particularly important when your symptoms are acting up. Try to drink fluids regularly throughout the day. Water is a good option, and an oral rehydration solution may be recommended if you're losing a lot of fluid. You might find that fizzy drinks, energy drinks or drinks containing lots of caffeine make bloating or diarrhoea worse. Tell your parent or carer if you're struggling to drink, passing much less urine than usual or feeling dizzy. Seek urgent medical advice if you have signs of significant dehydration or can't keep fluids down. 🚫 What foods should I avoid? There isn't a universal list of foods that everyone with IBD needs to avoid when their tummy is playing up. Some people find that fatty or fried foods, spicy meals, fizzy drinks or certain dairy products make their symptoms worse. Others can eat these foods without any problems. During a flare-up, some people also find high-fibre foods harder to tolerate. However, you shouldn't automatically cut out fruit, vegetables, wholegrains or dairy products without a good reason. A food making your symptoms worse doesn't necessarily mean it's causing more inflammation. If you're noticing repeated problems after eating particular foods, your IBD team or dietitian can help you work out what might be happening. 💪 How can I make sure I'm still getting enough nutrients? When your tummy is unsettled, you might eat less than usual. But your body still needs energy, protein, vitamins and minerals to grow, stay strong and recover. If you're finding it difficult to eat full meals, you could try nourishing snacks between meals or choose foods that provide both energy and protein. Your dietitian may also recommend nutritional drinks or other support if you're struggling to meet your needs through food alone. Let your healthcare team know if you're losing weight without meaning to, feeling unusually tired or avoiding more and more foods. 🩺 When should I ask for help? It's important to tell your parent or carer and contact your IBD team if: Your tummy pain or diarrhoea is getting worse. You're struggling to eat or drink enough. You're losing weight without meaning to. You're vomiting or having frequent diarrhoea. You're feeling weak, dizzy or unusually tired. Your symptoms aren't settling or feel different from your usual symptoms. Severe or worsening abdominal pain, significant bleeding, repeated vomiting or signs of severe dehydration need urgent medical assessment. Don't assume that every episode of tummy trouble is caused by food. Your IBD team can help you work out whether your symptoms might be related to inflammation or something else. 💚 Remember When your tummy is playing up, it's okay to keep things simple and choose foods that feel comfortable for you. Try smaller meals if they help, drink enough fluids and focus on getting the nutrition your body needs. You don't have to follow a strict diet or cut out lots of foods to manage your symptoms. If your tummy keeps bothering you, you don't have to figure it out alone. Your IBD team can help you find a plan that works for you. This article is for general information only and is not a substitute for medical advice. Food tolerance and nutritional needs vary from person to person. Speak to your IBD team or a qualified dietitian before making significant dietary changes. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Flares Feeling tired during a flare Learn why fatigue can happen, how it can affect school, sport and everyday life, and practical ways to look after yourself while your body is recovering. One of the hardest parts of an IBD flare can be feeling really, really tired . Not just the kind of tired you feel after staying up too late. You might feel like you've run out of energy completely. You might wake up tired, struggle to concentrate at school, need to rest during the day or feel exhausted after doing things that would normally be easy. And sometimes you might wonder: “Why am I so tired when I haven't even done anything?” The answer is that your body is working hard. 🔥 Why does a flare make me tired? When your IBD is active, there is inflammation happening inside your body. Your body uses energy dealing with that inflammation, which can leave you feeling exhausted. Other things can add to the tiredness too. For example, during a flare you might: Have diarrhoea frequently Lose fluids Have trouble sleeping Eat less than usual Lose weight Have low iron or anaemia Feel stressed or worried Spend more energy than usual just getting through the day So if you're completely worn out, you're not being lazy . Your body may genuinely need more rest. 😴 What does IBD fatigue feel like? Everyone experiences fatigue differently. You might notice: You feel tired even after sleeping You struggle to get out of bed Your legs or body feel heavy You can't concentrate as well Schoolwork takes much more effort You feel like you need a nap You run out of energy quickly You don't feel like seeing friends Sport feels much harder You get tired after simple activities You might also feel frustrated because your brain wants to do something, but your body just doesn't have the energy. 🏫 What about school? Fatigue can make school surprisingly difficult. You might be sitting in class thinking: “I can't concentrate.” You may read the same sentence several times and still not take it in. You might struggle to remember things or find yourself zoning out. That's not because you're not trying. Fatigue can affect your concentration and thinking. If you're struggling, tell your parent, carer or someone at school you trust. Your school may be able to help with things like: Rest breaks A quieter place to work Extra time for assignments Extensions Help catching up after being away Reduced workload while you're unwell Flexibility with PE You don't have to push yourself until you completely run out of energy. 🏃 What about sport? You might normally love sport but suddenly find that you can't keep up. You may get tired much faster than usual. That's okay. When you're having a flare, you may need to take a break from sport or reduce how much you do. Listen to your body and follow the advice of your healthcare team. Taking a break isn't giving up. It's giving your body time to recover. 🛋️ It's okay to rest Sometimes you might feel guilty for resting. You might think: “Everyone else is doing things. I should be too.” But rest isn't wasting time. Your body needs energy to recover. Try giving yourself permission to: Have a nap Lie down and listen to music Watch a movie Read Spend some quiet time alone Take a break from your phone Go to bed earlier Say no to plans when you need to You don't have to fill every minute of your day. 🍽️ Make sure you're getting enough food When you're tired and don't feel hungry, eating can feel like another job. But your body needs energy and nutrients to grow, repair itself and recover. Try to keep eating and drinking as much as you can. If large meals feel difficult, smaller meals and snacks may be easier. If you're struggling to eat enough, losing weight or your appetite has changed a lot, tell your parent, carer or IBD team. Your dietitian can help you work out how to get the nutrition your body needs. 💧 Keep drinking If you're having diarrhoea or vomiting, you can lose fluids. Even mild dehydration can make you feel more tired, dizzy or weak. Keep drinking regularly. If your healthcare team has given you advice about oral rehydration solutions, follow your individual plan. Tell an adult if you're struggling to drink enough or you're feeling very dizzy or weak. 🩸 What about iron? Sometimes tiredness during IBD can be related to low iron or anaemia . Your IBD team may check your blood to see what's happening. If your doctor finds that your iron is low, they can recommend the right treatment. Don't start taking iron supplements on your own just because you're tired. Your healthcare team can check whether you actually need them and which type is appropriate. 🌙 Sleep can be harder during a flare Pain, diarrhoea and needing the toilet during the night can make it difficult to get enough sleep. You might wake up several times or feel like you haven't slept properly. If you're not sleeping well, tell your parent, carer or IBD team. There may be things they can do to help manage the symptoms causing you to wake up. 💬 Tell people when you're tired Fatigue isn't always obvious. Someone might look at you and think: “But you look fine.” They can't see how tired you feel inside. You don't have to prove that you're exhausted. Try telling the people around you: “I'm really tired today because my IBD is flaring.” Or: “I need to have a rest before I do that.” The people who support you need to know how you're feeling so they can help. 🧠 Looking after your mental energy Being tired all the time can affect your mood too. You might feel: Irritable Frustrated Sad Bored Overwhelmed Like you don't want to do anything That's understandable. Being unwell takes mental energy as well as physical energy. Talk to someone if you're struggling. You don't have to deal with everything by yourself. 🩺 When should I tell my IBD team? Tell your healthcare team if your tiredness is: Much worse than usual Lasting a long time Stopping you from going to school Making everyday activities difficult Happening along with other worsening symptoms Affecting your eating or drinking Making you feel dizzy, weak or faint Your IBD team may want to check whether your IBD is active or whether something else, such as low iron or anaemia, could be contributing. 🚩 When should I get help quickly? Tell an adult straight away if you feel very weak, faint, confused or seriously unwell . You may need urgent medical attention if you're having severe symptoms, significant bleeding, repeated vomiting or signs of serious dehydration. Don't try to push through feeling seriously unwell. 🌱 Getting your energy back When your IBD is brought back under control, your energy should hopefully start to improve too. But it may not happen overnight. You might feel better one day and completely exhausted the next. That's okay. Recovery isn't always a straight line. Give yourself time. Celebrate the little improvements: “I got through the school day.” “I had enough energy to see my friend.” “I went for a short walk.” “I didn't need to rest as much today.” Those things count. 💛 Remember Feeling exhausted during an IBD flare doesn't mean you're lazy, weak or not trying hard enough. Fatigue is a real symptom. Your body is dealing with inflammation, and it may need extra energy and extra rest. Listen to your body. Eat and drink as well as you can. Take breaks. Ask for support at school. And tell your IBD team if your tiredness is severe, persistent or getting worse. You don't have to keep up with everyone else while your body is recovering. Rest isn't giving up. It's part of looking after yourself. 💛 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. 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Food & Nutrition Foods that help you get the nutrients you need Discover the foods that help your body grow, stay strong, and get the nutrients it needs when you have IBD. When you have inflammatory bowel disease (IBD), getting the nutrients your body needs is especially important. Your body is still growing and developing, and it needs enough energy, vitamins and minerals to help you feel your best. Sometimes, IBD can make it harder to eat enough or absorb certain nutrients. You might have a smaller appetite, feel full quickly or find that some foods upset your tummy. The good news is that there are lots of different foods that can help keep your body strong and healthy. You don't need to eat perfectly or follow the same diet as someone else. The aim is to find foods that work for you and help you get the nutrition you need. 💪 Why does my body need nutrients? Nutrients are the things in food that help your body grow, repair itself and work properly. They help you: Grow taller and develop during puberty. Build strong bones and muscles. Have energy for school, sport and everyday activities. Concentrate and learn. Support your immune system. Repair tissues and recover when you're unwell. When you have IBD, inflammation can sometimes increase your nutritional needs or make it harder for your body to absorb certain nutrients. That's why your healthcare team might check your growth, weight and blood tests to make sure you're getting what you need. 🍞 Carbohydrates for energy Carbohydrates are one of your body's main sources of energy. They help fuel your brain, muscles and everyday activities. Foods that contain carbohydrates include: Bread and toast. Rice. Pasta. Potatoes and sweet potatoes. Oats and breakfast cereals. Crackers. Fruit. If you're having a flare, you might find some high-fibre carbohydrates harder to tolerate. For example, white bread or white rice may feel more comfortable than wholegrain varieties for some people. You don't have to avoid wholegrains if you tolerate them well. The best choices depend on your symptoms and individual needs. 🍗 Protein to help you grow and repair Protein helps your body build and repair muscles, skin and other tissues. It's particularly important when you're growing or recovering from illness. Good sources of protein include: Chicken and turkey. Fish. Eggs. Lean meat. Milk, yoghurt and cheese. Beans and lentils. Tofu. Nut and seed butters, if tolerated. Try to include protein-rich foods regularly throughout the day. If you have a smaller appetite, having some protein with meals and snacks can help you get more nutrition from the food you manage to eat. During a flare, your body may need more protein than usual, so speak to your dietitian if you're struggling to eat enough. 🥑 Healthy fats for energy and development Fats provide energy and help your body absorb vitamins A, D, E and K. They also support growth and the development of your brain and nervous system. Sources of healthy fats include: Avocados. Olive oil. Oily fish, such as salmon. Nuts and seeds. Peanut butter and other nut butters. Fatty foods can sometimes make diarrhoea or nausea worse during a flare. If this happens to you, your dietitian can help you find other ways to get enough energy and essential fats without making your symptoms harder to manage. 🥦 Vitamins and minerals to keep your body healthy Your body needs different vitamins and minerals for everything from making red blood cells to keeping your bones strong. Some nutrients are particularly important when you have IBD. 🩸 Iron Iron helps your body make red blood cells, which carry oxygen around your body. Low iron levels can contribute to tiredness and weakness. Sources include meat, eggs, lentils, beans and iron-fortified cereals. 🦴 Calcium Calcium helps build strong bones and teeth. Getting enough is especially important during childhood and the teenage years. Sources include milk, yoghurt, cheese and calcium-fortified alternatives. ☀️ Vitamin D Vitamin D helps your body absorb calcium and supports bone health. Sources include oily fish, eggs and some fortified foods. Your body also makes vitamin D when your skin is exposed to sunlight. 🌱 Folate and vitamin B12 These vitamins help your body make healthy blood cells and support your nervous system. Folate is found in leafy greens, beans and fortified cereals. Vitamin B12 is found in animal foods and some fortified alternatives. 🛡️ Zinc Zinc supports growth, healing and normal immune function. Sources include meat, eggs, dairy products, beans and seeds. IBD can affect how well you absorb some nutrients, and certain medicines or surgeries can increase the risk of deficiencies. Your healthcare team can check whether you need extra support. 🍓 Fruit and vegetables for a range of nutrients Fruit and vegetables provide vitamins, minerals, fibre and other nutrients that support your health. You could try: Bananas, berries and melon. Apples or pears. Carrots and pumpkin. Broccoli and spinach. Peas and green beans. You don't have to eat every fruit or vegetable to get the benefits. Try different colours and varieties that you enjoy and tolerate. If you're having a flare, you might find that cooked, peeled or softer fruit and vegetables are easier to manage than raw or high-fibre options. If you have a narrowing in your bowel, follow the advice of your IBD team about which foods and textures are safe for you. 🥛 What if I struggle to eat enough? Sometimes, IBD can make eating difficult. You might feel full quickly, lose your appetite or worry that eating will trigger symptoms. If this happens, there are ways to help you get more nutrition. Try smaller, more frequent meals. Several smaller meals or snacks might feel easier than three large meals. Choose nourishing snacks. Yoghurt, cheese and crackers, eggs or a smoothie may help you get extra energy and protein. Make meals more nutritious. Adding olive oil, cheese or nut butter to foods you tolerate can increase their energy content. Keep easy foods available. When you're tired or unwell, simple foods that you know agree with you can make eating easier. Ask for help. Your dietitian can suggest options that suit your symptoms and nutritional needs. If you're regularly struggling to eat, losing weight or feeling weak, tell your parent or carer and your IBD team. 🥤 Do I need nutritional drinks or supplements? Not everyone with IBD needs supplements or nutritional drinks. Many people can get what they need from food, while others need additional support. Your healthcare team might recommend: Nutritional drinks to provide extra energy, protein and nutrients when eating enough is difficult. Iron supplements if your iron levels are low. Vitamin D or calcium if you need extra support for bone health. Vitamin B12 injections or supplements if you cannot absorb enough vitamin B12. Other vitamins or minerals if blood tests or your medical history show that you need them. Some supplements can cause side effects or interact with medicines, so don't start taking high-dose vitamins or minerals without advice from your healthcare team. 🍽️ What if some healthy foods upset my tummy? A food can be nutritious and still be difficult for you to tolerate at certain times. For example, beans, wholegrains and raw vegetables contain useful nutrients, but their fibre may increase discomfort for some people during a flare. This doesn't mean you need to avoid these foods forever. You might tolerate them better when your IBD is under control, or when they're prepared differently. Focus on getting enough nutrition from the foods you can manage. If you're avoiding several food groups, ask your dietitian to help you find suitable alternatives. You don't have to eat a particular food just because it's considered healthy. Your individual needs and how you feel matter, too. 💚 Remember There isn't one perfect diet for everyone with IBD. Your nutritional needs may change as you grow, as your symptoms change and as you move through different stages of treatment. Aim to eat a variety of foods that you enjoy and tolerate, get enough energy and protein, and ask for help if eating becomes difficult. Your IBD team and dietitian can help you make sure you're getting the nutrients you need to grow, stay strong and do the things you love. This article is for general information only and is not a substitute for medical advice. Nutritional needs vary from person to person. Speak to your IBD team or a qualified dietitian before making significant dietary changes or starting supplements. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Feelings & Mental Wellbeing Hospital appointments and medical anxiety: getting through the scary bits Discover practical ways to manage anxiety, prepare for appointments, and feel more confident asking questions and speaking up about your needs. Hospital appointments can bring up lots of different feelings. You might feel nervous about seeing your doctor, worry that a test will hurt, or feel anxious because you don't know what is going to happen. Maybe you have blood tests, scans, procedures or regular appointments to check how your IBD is doing. Even if you've been to hospital lots of times before, it doesn't mean you will always feel comfortable going back. You might worry about bad news, needles, pain, or having to talk about things that feel embarrassing. You might even feel anxious days before your appointment arrives. If any of this sounds familiar, you're not alone. Feeling worried about medical appointments is common, and there are things you can do to help make them feel a little easier. 💭 Why do hospital appointments make me nervous? There are lots of reasons why medical appointments can feel scary, and everyone experiences them differently. You might be worried about: Not knowing what will happen. Waiting for someone to explain a test or procedure can make your imagination run wild. Pain or discomfort. You might remember a blood test, cannula or other procedure that hurt or felt uncomfortable. Getting bad news. You may worry that your IBD is getting worse or that your treatment will need to change. Feeling out of control. Having other people make decisions about your health can sometimes feel overwhelming. Embarrassing questions. Talking about bowel movements, toilet habits or other personal symptoms might feel awkward. Missing out. You might be frustrated about missing school, sport, time with friends or other things you enjoy. Sometimes, you might not even know exactly what you're worried about. You just know that hospitals make you feel uncomfortable. Whatever the reason, your feelings are real. You don't have to feel embarrassed about being scared, and you don't have to pretend to be brave all the time. 🩺 Knowing what to expect can help One of the hardest parts of a medical appointment can be not knowing what is going to happen. If you are feeling worried, ask your parent or carer to help you find out what the appointment will involve. You might want to know: Who will you see? Will you need any tests? Will you need a blood test or cannula? How long might the appointment take? Will you need to prepare beforehand? Is there anything you should bring? You can also ask your doctor or nurse to explain what they plan to do before they start. Knowing what to expect won't always make the nerves disappear, but it can help you feel more prepared. Remember, it is okay to ask questions more than once if you don't understand something. You deserve to know what is happening to your body. 🌬️ Calming your nerves before an appointment Sometimes, the worry starts long before you even arrive at the hospital. You might think about the appointment at bedtime, feel sick with nerves in the morning, or keep imagining everything that could go wrong. Here are a few things you can try to help settle your mind. Try slow breathing. Breathe in gently through your nose, then breathe out slowly. Repeat this a few times without forcing your breath. You don't have to take huge breaths; just aim for a comfortable, steady rhythm. Listen to something you enjoy. Your favourite music, an audiobook or a podcast can help distract you while travelling to hospital or waiting for your appointment. Bring something comforting. You might like to bring headphones, a favourite hoodie, a book, a small toy or something else that helps you feel more relaxed. Talk about your worries. Tell your parent, carer or another trusted adult what is making you anxious. Sometimes, saying your fears out loud can make them feel less overwhelming. Focus on one step at a time. Instead of thinking about the entire appointment, focus on the next small step. That might be getting dressed, travelling to hospital, checking in or meeting your nurse. You don't have to work through the whole appointment in your head before it happens. 💉 When you're scared of needles or blood tests Blood tests and cannulas can be particularly scary, especially if you've had a painful experience before. You might worry about the needle, the feeling of it going in, seeing blood or not knowing when it will happen. If needles make you anxious, tell your nurse before the test starts. They are used to helping people who feel nervous, and they may be able to offer ways to make the experience easier. You could try: Looking away. You don't have to watch if seeing the needle makes you more anxious. Using a distraction. Listen to music, watch a video, play a game or chat with someone. Keeping your body relaxed. Let your arm rest comfortably and follow the nurse's instructions. Asking about numbing cream. Some hospitals can offer numbing cream or other options to reduce discomfort. Ask your healthcare team whether this is suitable and how far in advance it needs to be applied. Having someone beside you. A parent, carer or another trusted person may be able to hold your hand or talk to you during the test. If you feel dizzy, faint or very panicky, tell the nurse straight away so they can help you safely. And remember, you can ask the nurse to explain each step before they do it. You can also ask whether a short pause is possible. Being scared of needles doesn't make you weak. It is something you can learn to manage with support. 🗣️ It's okay to speak up When you're at hospital, you might feel like the adults know everything and you should just do what you're told. But you are an important part of your healthcare team, too. You are allowed to ask questions, explain how you feel and tell someone when you are scared or uncomfortable. You could say: "I'm feeling really nervous about this." "Can you explain what you're going to do before you start?" "I'm worried this might hurt. Can you tell me what it will feel like?" "Can you talk me through each step?" "Can we have a short break if I need one?" "I'm not sure I understand. Can you explain that another way?" If you are worried about asking questions yourself, your parent or carer can help you speak up. For older kids and teens, appointments can also be a chance to start asking some questions independently, if that feels comfortable. You can build confidence gradually, at your own pace. 🏥 When you're worried about what the doctor might say Sometimes, the scariest part of an appointment isn't a test. It's waiting to find out how your IBD is going. You might worry that your results will be bad, your symptoms will get worse, or your medication will change. Waiting for answers can be difficult because you don't always know what will happen next. When you notice yourself imagining the worst, try reminding yourself that worrying about a result doesn't mean the result will be bad. Your healthcare team uses appointments and tests to understand how your body is doing and decide what support you might need. If your treatment needs to change, your doctor should explain why and talk with you and your parent or carer about the next steps. You don't have to understand everything immediately. It is okay to ask questions, take time to process information and come back with more questions later. If waiting for results makes you especially anxious, ask your healthcare team when you can expect to hear back and who you should contact if you haven't heard anything. Having a plan can help make the waiting feel less uncertain. 🧸 What if I feel embarrassed talking about my symptoms? Talking about bowel movements, diarrhoea, blood in your poo, accidents or other personal symptoms can feel awkward. You might worry that the doctor will think something is gross or that your parent will hear something you don't want to share. But your healthcare team discusses these things because they are important for understanding your IBD and helping you feel better. You don't have to describe everything perfectly. Just try to explain what you've noticed as honestly as you can. If you feel embarrassed, you could: Write down your symptoms before the appointment. Ask your parent or carer to help explain something. Ask to speak to your doctor or nurse privately for part of the appointment, if appropriate. Tell your healthcare team that you feel awkward talking about a particular subject. Doctors and nurses are used to discussing these topics. Their job is to help you, not to judge you. 🎒 Making an appointment feel easier Having a few familiar things with you can make a hospital visit feel less overwhelming. Before you leave home, you could pack: Headphones and your favourite playlist. A book, game or activity to keep you occupied. A drink or snack, if you are allowed to eat and drink before your appointment or tests. A list of questions you want to ask. Something comfortable to wear. Any paperwork or information your healthcare team has asked you to bring. You might also like to plan something enjoyable for afterwards, such as watching a favourite film, spending time with someone you love or doing a relaxing activity. It doesn't have to be a big reward. Having something nice to look forward to can help you get through a difficult day. 💚 What if my anxiety doesn't go away? Sometimes, medical anxiety can be so strong that it affects your sleep, causes panic, makes you feel sick or leaves you worrying for days before an appointment. If this happens, you deserve extra support. Talk to your parent or carer, IBD nurse or doctor about how anxious you feel. They may be able to help you make appointments more comfortable or connect you with someone who can help you manage your anxiety. A psychologist can teach you strategies for handling medical fears, and some hospitals have child life therapists or other professionals who help children and teens prepare for procedures. You don't have to wait until your anxiety becomes overwhelming before asking for help. If a particular procedure frightens you, let your healthcare team know ahead of time rather than waiting until you're already in the room. That gives them more opportunity to discuss ways to support you. ⭐ Remember this It's okay to feel scared about hospital appointments. You can be nervous and still get through something difficult, and you don't have to do it without support. Ask questions, tell your healthcare team how you feel, and use the things that help you feel calmer. Every appointment is also an opportunity to practise speaking up for yourself and learning what works for you. You might not feel confident every time, and that's okay. Being brave doesn't mean never feeling scared. Sometimes, it simply means taking the next step while someone helps you along the way. You deserve to feel safe, listened to and supported throughout your IBD care. 💚 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Feelings & Mental Wellbeing When IBD feels unfair: coping with the “why me?” moments Discover ways to cope with difficult emotions, feel less alone, and find support when IBD feels overwhelming. Living with inflammatory bowel disease (IBD) can sometimes feel really unfair. You might look at your friends and wonder why they can eat what they want, go to school without worrying about the toilet, or make plans without thinking about how their body might feel. You might wonder, “Why did this happen to me?” or “Why do I have to deal with all of this when other people don’t?” If you have ever felt this way, you are not alone. Having IBD can bring up lots of difficult feelings, and it is okay to admit when things feel unfair. You do not have to pretend to be positive all the time. 💭 It’s okay to ask, “why me?” There is no easy answer to why you developed IBD. It is not something you caused, and it is not a punishment for anything you did. Sometimes, not having a clear answer can make things even harder. You might feel angry, frustrated, sad, jealous or confused. You might even feel guilty for being upset when you know other people have difficulties, too. All these feelings are normal. You can be grateful for the people who support you and still wish you did not have IBD. You can have a good day and still feel upset about your condition. You can love your life and still hate what IBD sometimes makes you deal with. Two things can be true at the same time. You do not have to choose between being positive and admitting that something is hard. 😠 When it feels like everyone else has it easier It can be difficult watching your friends do things that you sometimes cannot do as easily. Maybe someone cancels plans because they are tired, but you have to cancel because of pain or urgency. Perhaps your friends never have to think about medication, hospital appointments, blood tests or whether there will be a toilet nearby. You might feel left out when you miss school, sports, parties or other activities because of a flare-up. It is okay to feel jealous sometimes. Jealousy does not make you a bad friend. It often means there is something you wish you could do, or something you feel you are missing out on. When these feelings come up, try to remind yourself that you are not seeing the whole picture of someone else's life. You cannot always know what another person is dealing with, just as they might not understand everything you experience. Your feelings still matter, though. You do not have to dismiss them just because someone else might have difficulties of their own. 🌧️ Dealing with the days when everything feels too much Some days, IBD might feel manageable. On other days, even one more appointment, symptom or change of plans might feel like too much. When that happens, you do not need to fix every problem straight away. Sometimes, the first step is simply recognising how you feel. Here are a few things you could try: Name the feeling. Are you angry, disappointed, exhausted, worried or sad? Putting a name to a feeling can make it easier to understand. Give yourself permission to feel it. You do not have to push away your emotions or pretend everything is fine. Take a break. Listen to music, watch something funny, read, draw or do something else that helps you relax. Talk to someone you trust. This could be a parent, sibling, friend, teacher, IBD nurse or another person who makes you feel safe. Focus on one small thing. If everything feels overwhelming, think about what might help you get through the next hour rather than worrying about the whole week. You do not have to turn every difficult moment into a positive lesson. Sometimes, getting through a tough day is enough. 🫂 When you feel different from your friends Having IBD can sometimes make you feel as though you are different from everyone around you. You might worry that your friends will not understand, or feel frustrated when you have to explain why you cannot do something. Remember that having IBD is something you live with, not everything you are. You are still the same person with your own personality, interests, friendships, goals and sense of humour. IBD might affect parts of your life, but it does not take away the things that make you you. You also do not have to tell everyone about your condition if you do not want to. You can decide what you share, who you tell and when you feel comfortable talking about it. If you want your friends to understand a little more, you could explain what IBD means for you. You do not need to give them every detail. Sometimes, saying something as simple as, “I might need to change plans if I feel unwell, but it doesn't mean I don't want to hang out,” can help. Good friends might not always understand straight away, but they should try to listen and respect what you need. 💚 Finding things you can control IBD can sometimes make you feel as though decisions are being made for you. You might have appointments to attend, medication to take, symptoms to manage or plans that change unexpectedly. When so much feels out of your control, it can help to focus on the small things you can influence. You might choose the music you listen to on the way to hospital, decide what hobby you want to try, make plans with a friend somewhere comfortable, or speak up about what would make an appointment easier. You can also ask questions about your treatment and be involved in decisions about your care as you get older. These things will not make IBD disappear, and they will not always make a difficult day feel better. But they can help you feel more involved in your own life. And remember, asking for help is also a way of taking control. You do not have to manage everything by yourself. 🌈 You can still have good things to look forward to When IBD is difficult, it can sometimes feel as though your condition is taking over everything. You might struggle to imagine how things will get better, especially during a flare-up or a long period of feeling unwell. You do not have to figure out your whole future right now. Instead, think about the things you enjoy or would like to do. Maybe it is spending time with friends, learning an instrument, playing a sport when you feel well enough, getting into a new hobby or planning something special with your family. Some plans might need to be flexible, and you may need extra support along the way. That does not mean you have to stop having hopes, dreams or things to look forward to. Your life can contain difficult days and brilliant ones. It can include hospital appointments and fun experiences, frustrating setbacks and exciting new opportunities. IBD is part of your story, but it is not your whole story. 🩷 When you need a little extra support If thoughts about IBD feeling unfair are becoming overwhelming, or you are feeling sad, angry or worried a lot of the time, it can help to talk to someone. You could speak to a parent or carer, your IBD nurse, your doctor, a school counsellor or a mental health professional. They can help you work through what you are feeling and find ways to cope. You do not need to wait until things feel unbearable before asking for support. You deserve help with the emotional side of IBD just as much as you deserve help with the physical symptoms. If talking feels difficult, you could write down what you want to say or send someone a message instead. You might start with, “I'm finding it hard to deal with having IBD at the moment, and I need someone to talk to.” That is enough to get the conversation started. ⭐ Remember this It is okay to have moments when you hate having IBD. It is okay to feel jealous, angry, disappointed or sad about the things it makes harder. You do not have to be brave every day, find a positive side to every situation or prove to anyone that you are coping. Be patient with yourself. Celebrate the little things, ask for help when you need it, and give yourself permission to have difficult days. You did not choose to have IBD, but you deserve support, understanding and opportunities to enjoy being a kid or teenager. And even when it feels unfair, you do not have to face it alone. This article is for general information and support only. It is not a substitute for professional medical advice, diagnosis or treatment. If you are struggling with your feelings or finding it difficult to cope with IBD, speak to a trusted adult or healthcare professional for support. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Feelings & Mental Wellbeing Finding your happy place: hobbies that help you cope Discover how hobbies can help you relax, express your feelings, and take a break from the challenges of living with IBD. Living with inflammatory bowel disease (IBD) can sometimes feel like a lot to deal with. Between symptoms, appointments, medication, school, and everything else happening in your life, you might feel like IBD takes up more space in your day than you'd like. That's why having something you enjoy doing can be so important. A hobby gives you something to look forward to, a chance to express yourself, or simply a way to take a break from thinking about IBD for a while. It doesn't have to be something you're good at, and it doesn't need to take up lots of time. Whether you love drawing, playing games, listening to music, baking, gardening, or spending time outdoors, there are plenty of ways to find your happy place. 💚 What is a happy place? Your happy place doesn't have to be a real location. It can be an activity, a feeling, or a moment when you feel relaxed, comfortable, or more like yourself. Maybe you feel happiest when you're listening to your favourite songs with your headphones on. Perhaps you love getting lost in a book, playing with your pet, building something, or chatting with a friend. Your happy place might even be somewhere quiet where you can rest without anyone expecting anything from you. Living with IBD can sometimes mean changing plans or taking extra time to look after yourself. Having something you enjoy can remind you that there's more to life than managing your condition. Your hobby doesn't have to fix everything. It just needs to be something that makes you feel good. 🎨 Get creative and express yourself Sometimes, feelings can be difficult to explain. You might feel frustrated, worried, sad, or overwhelmed without knowing exactly why. Creative activities can give you a way to express those feelings without having to find the right words. Here are some ideas to try: Drawing or painting: Create pictures, experiment with colours, or doodle whatever comes into your head. Writing: Keep a journal, write stories, create poems, or make up your own characters. Photography: Take photos of nature, your pets, interesting buildings, or everyday things you find beautiful. Crafts: Try making jewellery, friendship bracelets, clay creations, or decorations for your room. Music: Learn an instrument, write songs, make playlists, or sing along to your favourite tracks. You don't need expensive equipment or special skills. You can start with whatever you already have at home. And remember, you don't have to show anyone what you create. Sometimes, making something just for yourself is the best part. 🎮 Find a hobby that lets you switch off Some days, you might not feel like doing anything that requires lots of energy or concentration. That's completely okay. On those days, a relaxing activity can help you take a mental break. You could try: Playing your favourite video game. Watching a funny show or movie. Listening to music or an audiobook. Doing a puzzle or playing a board game. Reading a book or comic. Building with LEGO or other construction toys. Learning something interesting online. If you're spending a lot of time resting during a flare, you might enjoy activities you can do from bed or the sofa. You could also try playing an online game with friends when you're not feeling well enough to meet up in person. It can be a way to stay connected without needing to leave home. It's okay if your hobbies look different on days when your symptoms are worse. You can adapt what you do to suit how you're feeling. 🌿 Spend time in nature Getting outside can be a lovely way to take a break from your usual routine, if you're feeling up to it. You don't have to go on a huge hike or spend hours outdoors. Sometimes, the smallest things can be enjoyable. You could try: Going for a gentle walk. Sitting outside and listening to the birds. Growing herbs, flowers, or vegetables. Taking photos of interesting plants or insects. Watching the sunset. Having a picnic somewhere with easy access to toilets. Looking after a pet or spending time with animals. If you're worried about needing a toilet, choose somewhere familiar with accessible facilities nearby. Planning ahead can help you feel more comfortable. And if you don't feel well enough to go outside, you can still enjoy nature from a window, listen to outdoor sounds, or look at photographs of places you'd love to visit. There is no right or wrong way to enjoy the outdoors. 🏀 Try something active when you feel well enough Movement can be an enjoyable hobby, too. You might love the feeling of kicking a football, riding a bike, dancing to music, or learning a new sport. Being active doesn't have to mean training hard or trying to become the best at something. It can simply be about having fun and doing something you enjoy. You could try: Dancing in your bedroom. Shooting basketball hoops. Swimming. Riding a bike. Practising yoga or gentle stretching. Learning a new sport. Going for a walk with a friend. Some days, you might have plenty of energy. Other days, fatigue, pain, or other symptoms might make activity more difficult. That's okay. Rest when you need to, and choose activities that suit how you're feeling. If you have questions about exercise during a flare or any restrictions you might need, ask your healthcare team. Your body doesn't have to perform at the same level every day for you to enjoy being active. 🧑🤝🧑 Find hobbies you can enjoy with other people Hobbies can also be a great way to connect with friends and meet people who share your interests. When you're focused on doing something together, you might find it easier to relax and enjoy yourself without worrying about what to talk about. You could try: Joining an art, music, or drama group. Playing board games with friends. Joining a gaming community. Learning to cook or bake with someone. Trying a craft activity together. Joining a club at school. Starting a book club with friends. If you worry about your symptoms getting in the way, look for activities that are flexible or have easy access to a toilet. You can also tell a friend that you might need to take breaks or change plans sometimes. The right people will want you to be involved, even if you occasionally need to do things a little differently. 🛏️ Hobbies for days when IBD gets in the way One of the frustrating things about IBD is that you can't always predict how you'll feel. You might have plans to go out, play sport, or spend time with friends, only to wake up feeling unwell. It can be disappointing when you have to change your plans. Having a few backup activities can help you still find something enjoyable to do. Try making two lists: one for days when you have more energy and another for days when you need to rest. When you have more energy: Go for a walk or bike ride. Meet a friend. Try a new recipe. Work on a creative project. Play a sport or learn a new skill. When you need to rest: Listen to music. Watch a favourite movie. Read or listen to an audiobook. Play a relaxing game. Draw or colour. Message a friend. You don't have to feel productive every day. Resting, relaxing, and doing something enjoyable are valuable, too. If your symptoms regularly stop you from enjoying your usual activities, let your parent or carer and IBD team know. You deserve support with those difficulties. 💭 What if I don't know what I enjoy? Maybe you've never really had a hobby, or perhaps the things you used to enjoy don't feel as exciting at the moment. You don't need to find your perfect hobby straight away. Instead, think of it as an experiment. Try a few different things and notice how you feel while you're doing them. Ask yourself: Does this help me relax? Do I enjoy doing this, even if I'm not very good at it? Does it give me something to look forward to? Can I adapt it for days when I don't feel well? Would I enjoy doing it alone or with someone else? If you try something and don't enjoy it, that's fine. You can move on to something else. You don't need to turn your hobby into a talent, a competition, or something you're expected to be good at. It's allowed to be just for fun. 🌻 Make a little time for yourself When you're dealing with school, friendships, family life, and IBD, it can sometimes feel like there's always something you need to do. Finding time for a hobby doesn't mean adding another responsibility to your day. It means giving yourself permission to do something because you enjoy it. You might spend ten minutes drawing, listen to a favourite song before bed, or play a game after school. You could keep a small list of activities you enjoy and choose one whenever you need a break. Some days, you might not feel like doing anything at all. That's okay, too. You don't have to force yourself to have fun. The aim is to find little moments that help you feel comfortable, relaxed, or connected to the things you love. ⭐ Remember this Living with IBD can sometimes be difficult, but your life is about much more than your condition. Your hobbies can help you express yourself, connect with other people, discover new interests, and enjoy moments that belong just to you. You don't need to be good at something, spend lots of money, or do it every day. Start small, try different things, and choose activities that make you happy. And if your favourite hobby needs to change because of your symptoms, remember that you can find new ways to enjoy the things you love. Your happy place doesn't have to be perfect. It just needs to be a place where you can be yourself. 💚 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Feelings & Mental Wellbeing When friends don't understand your IBD Learn how to explain IBD to your friends, handle hurtful comments, and cope when others don't understand what you're going through. Having inflammatory bowel disease (IBD) can sometimes make friendships tricky. Your friends might not understand why you feel unwell, why you need to cancel plans, or why you sometimes need to leave class or an activity to use the toilet. It can be frustrating when people don't understand what you're going through, especially when you just want to feel like everyone else. Maybe a friend thinks you're exaggerating, makes jokes about your symptoms, or gets annoyed when you can't hang out. You might feel hurt, embarrassed, lonely, or even worried that your friends will stop inviting you to things. If this sounds familiar, you're not alone. Let's look at why friends might not understand IBD, what you can do about it, and how to handle friendships when things get difficult. 💭 Why don't my friends understand IBD? IBD can be difficult for other people to understand because they can't always see what you're experiencing. You might look completely fine on the outside while dealing with stomach pain, tiredness, nausea, or other symptoms on the inside. Your friends might wonder why you need to rest when you don't look sick or why you suddenly can't do something you were looking forward to. They might also confuse IBD with irritable bowel syndrome (IBS), a stomach bug, or simply having a sensitive stomach. They may not realise that IBD is a long-term condition that can cause inflammation in your digestive system. Sometimes, friends don't understand because they've never experienced anything similar. They might not know what to say or how to help. Not understanding doesn't always mean someone doesn't care. Your friends might need a little help learning about IBD. However, it's important to remember that you deserve to be treated with kindness and respect, even when someone doesn't fully understand your condition. 🗣️ How to explain IBD to your friends You don't have to give your friends a full science lesson about IBD. Sometimes, a simple explanation is enough to help them understand what you're dealing with. You could say things like: "I have a condition called IBD that causes inflammation in my digestive system." "Sometimes, I feel really tired or have stomach pain, even if I look fine." "I might need to cancel plans when I'm unwell. It doesn't mean I don't want to spend time with you." "I sometimes need to use the toilet urgently, and I can't always control when that happens." "IBD isn't something I can just switch off, and I can't always predict how I'll feel." You can choose how much information you share. You don't have to explain your symptoms in detail or talk about anything that makes you uncomfortable. If talking face-to-face feels awkward, you could send your friend a message instead. You could also share a website or article that explains IBD in a way that's easy to understand. Remember, you don't have to convince everyone to understand every part of your condition. The goal is to help your friends understand enough to treat you with care. 😔 When your friends think you're making excuses It can really hurt when a friend thinks you're making excuses because you can't do something. Maybe you have to miss a birthday party, leave a sleepover early, or sit out of a sports activity because you're feeling unwell. If your friend responds with, "You're always sick," or "You're just making excuses," you might feel like you have to prove how bad you're feeling. You don't. You know what you're experiencing, even if your friend can't see it. You shouldn't have to show someone how much pain you're in to prove that you need rest or support. You could try saying: "I'm not making excuses. I'm genuinely not feeling well." "I wish I could come, too, but I need to look after myself today." "I know it might be hard to understand, but I can't always control my symptoms." You can explain your situation calmly, but you don't need to keep defending yourself if someone refuses to listen. If a friend regularly dismisses your symptoms or makes you feel guilty for being unwell, it might help to talk to a trusted adult about what's happening. 💚 What if my friends make jokes about my IBD? Sometimes, friends make jokes because they don't realise how hurtful their words can be. They might joke about your toilet breaks, your medication, your food choices, or the fact that you miss school. Even if they say they're only joking, it doesn't mean you have to find it funny. You are allowed to tell your friends when something upsets you. You could say: "I know you're joking, but I don't find that funny." "Please don't make jokes about my health." "I don't mind talking about IBD, but I don't want my symptoms to be the punchline." You don't need to laugh along to make everyone else comfortable. A good friend should care about how their words make you feel. They might make mistakes sometimes, but they should be willing to listen and try to do better when you explain that something hurts you. If the jokes continue, or if people are deliberately embarrassing you, it could be bullying rather than harmless teasing. Speak to a trusted adult, such as a parent, teacher, or school counsellor, if you need help dealing with it. 🫂 When you feel left out because of IBD Missing out on things because of IBD can be difficult enough without feeling as though your friends are moving on without you. You might see photos of your friends hanging out while you were at home feeling unwell. You might worry that they'll stop inviting you to things because they think you'll always say no. It's understandable if this makes you feel sad, jealous, or lonely. Here are some things you could try: Tell your friends you still want to be included. Let them know that even if you can't always attend, you'd still like to be invited. Suggest different plans. If a big day out feels too difficult, you might prefer a movie night, a relaxed catch-up, or a shorter activity. Stay connected in small ways. Sending messages, playing an online game, or having a quick video call can help you feel included when you can't go out. Make flexible plans. If your symptoms can be unpredictable, choose activities that can be changed or rescheduled if needed. Be kind to yourself. Missing an event doesn't mean you're a bad friend or that you're missing out on everything. You won't be able to attend every event, and that's okay. Your health matters, too. 🤝 What if my friends don't want to learn about IBD? You can explain IBD, answer questions, and give your friends opportunities to understand your experiences. But you cannot force someone to listen or care. If you've tried explaining your condition and a friend continues to dismiss your feelings, make hurtful comments, or treat you differently because of your health, it's worth thinking about how that friendship makes you feel. Ask yourself: Do I feel comfortable being myself around this person? Do they listen when I tell them something is upsetting me? Do they respect me when I need to look after my health? Do I feel supported, or do I often feel guilty or embarrassed? Not every friendship will be perfect. Friends can misunderstand each other, say the wrong thing, and need time to learn. But a healthy friendship should include respect, kindness, and room for both people to have feelings and needs. You deserve friends who try to understand you, even if they don't always get everything right. 🌈 Finding people who understand It can be comforting to meet other kids and teens who also live with IBD. They may understand things that are difficult to explain to friends who don't have a long-term health condition. You might connect with other young people through an IBD support organisation, a hospital support programme, or an age-appropriate online community. Talking to someone with similar experiences can remind you that you're not the only person dealing with unpredictable symptoms, missed activities, or awkward conversations. You don't have to replace your current friends with people who have IBD. Having a mix of friends and supportive people can be helpful. You can also talk to your IBD nurse, a parent or carer, or a school counsellor if you're struggling with friendships or feeling alone. ⭐ Remember this Your friends might not always understand what living with IBD feels like, and that's okay. They don't have to experience your condition themselves to treat you with kindness, listen to you, and respect your needs. You are not being difficult when you need to cancel plans, take a break, or put your health first. You are dealing with something that can be challenging, and you deserve understanding and support. Keep talking to the people who make you feel safe, give your friends a chance to learn when they're willing, and remember that you don't have to prove how you feel to deserve kindness. The right friends won't expect you to hide your IBD to fit in. They'll want you to feel included, supported, and accepted for who you are. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. 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Feelings & Mental Wellbeing The connection between stress, emotions and IBD symptoms Explore how stress and emotions can affect the way you feel when living with IBD, and learn practical ways to manage stress and difficult feelings. Have you ever noticed that your stomach seems to feel worse when you're worried about something? Maybe you have a big school presentation coming up, you're feeling anxious about an appointment, or you've had a difficult day with friends. Sometimes, you might notice more tummy discomfort or feel like you need the toilet more often when you're stressed. If you have inflammatory bowel disease (IBD), you might wonder whether your feelings and your symptoms are connected. The answer is that stress and emotions can affect how you feel when you have IBD, but they do not cause IBD, and having a flare is never your fault. Let's explore how your brain and gut communicate, why stress can sometimes make symptoms harder to manage, and what you can do to look after yourself. 🧠 Your brain and gut are connected Did you know that your brain and your digestive system are constantly communicating with each other? This connection is often called the gut–brain connection. Messages travel between your brain and gut through nerves, hormones and other signals in your body. That's why you might feel butterflies in your tummy before a big event, lose your appetite when you're worried, or feel nauseous when you're nervous. When you have IBD, this connection can be especially important. Stress and emotions can affect things such as how sensitive your gut feels, how your digestive system moves, and how strongly you notice pain or discomfort. For example, if you're already experiencing tummy pain, feeling anxious might make that pain feel even harder to cope with. This doesn't mean the pain is imaginary. The discomfort is real, and your brain and gut are working together in ways that can influence how you experience it. 😟 Can stress make my IBD symptoms worse? Stress is a normal part of life. Everyone experiences it sometimes, whether it's because of schoolwork, friendships, family changes, or something they're worried about. When you're stressed, your body releases chemicals that help you respond to challenges. This is sometimes called the stress response. Stress can affect your digestive system and may make certain symptoms feel worse, including: Tummy pain or cramping. Feeling nauseous. Changes in bowel habits or urgency. Trouble sleeping. Feeling tired or overwhelmed. Finding it harder to cope with symptoms you already have. Some people notice these changes during stressful situations, while others don't notice much of a connection at all. Research also suggests that ongoing stress may be associated with increased IBD disease activity or a higher risk of flares in some people. However, the relationship is complicated, and stress does not automatically cause a flare. IBD is an inflammatory condition, not something you can think yourself into having. Stress management can support your wellbeing, but it cannot replace medication or medical treatment. 💭 How emotions can affect the way you feel Living with IBD can bring up lots of different emotions. You might feel frustrated about missing school, embarrassed about needing the toilet, anxious about a flare, or sad when you can't do something your friends are doing. These feelings are completely understandable. Sometimes, strong emotions can make you more aware of what's happening in your body. If you're worried about having an accident, for example, you might find yourself constantly checking how your stomach feels. That worry can make it difficult to relax, and you might become even more focused on your symptoms. This can create a cycle: You notice a symptom. You start worrying about what it means. Your body becomes more tense or alert. The symptom feels more difficult to manage. You become even more worried. This doesn't happen to everyone, and it doesn't mean your symptoms are caused by anxiety. IBD symptoms can have physical causes that need medical attention. But understanding this cycle can help you recognise when worry is adding to an already difficult experience. 🔄 What is the stress and symptom cycle? Here's an example of how stress and symptoms might interact: Something stressful happens You have a school presentation coming up. You start to feel anxious You worry about feeling unwell in front of your classmates. Your symptoms feel harder to manage You notice more tummy discomfort or become more aware of needing the toilet. You become more worried You start worrying about your symptoms and what might happen next. The good news is that there are ways to interrupt this cycle. Calming strategies, support from other people, and having a plan for stressful situations can help you feel more prepared. However, if your symptoms are new, persistent or getting worse, tell your parent or carer and healthcare team rather than assuming stress is the cause. 🌬️ Ways to manage stress when you have IBD You can't always avoid stressful situations, and you don't need to eliminate stress from your life. Instead, you can learn ways to help your body and mind cope. Here are some things you could try: Try slow, comfortable breathing. When you're feeling anxious, gently breathe in and then breathe out slowly. Repeat a few times without forcing your breath. This can help you feel calmer when you're nervous before an appointment, test or school activity. Make time for activities you enjoy. Listening to music, drawing, reading, gaming or spending time with your pet can give your mind a break from worrying. Move your body when you feel up to it. Walking, dancing, swimming or playing a favourite sport can help you manage stress. Choose activities that suit your energy levels and how you're feeling physically. Talk about what's bothering you. Keeping everything inside can make worries feel bigger. Talking to a parent, friend, teacher, IBD nurse or counsellor can help you work through difficult feelings. Break big tasks into smaller steps. If homework, appointments or other responsibilities feel overwhelming, focus on one thing at a time. You don't have to solve everything at once. Give yourself time to rest. IBD can be exhausting, and rest is important. You don't have to fill every moment with activities or feel guilty when you need a break. Different things work for different people, so it's okay to experiment and find what helps you. 🏫 When stress at school affects how you feel School can sometimes be a big source of stress, especially when you're worried about symptoms happening in front of other people. You might feel anxious about: Giving a speech or presentation. Sitting through a lesson without needing the toilet. Going on an excursion or school camp. Catching up on work after being absent. Other students noticing your symptoms. Having to explain your IBD to a teacher. If these worries are affecting you, you don't have to manage them alone. You could talk to a parent or carer about making a plan with your school. This might include access to toilets when needed, flexibility around missed work, or a way to let a teacher know when you're feeling unwell. If you have a stressful event coming up, try planning ahead. Knowing where the toilets are, who you can ask for help, and what you can do if you feel unwell may help you feel more confident. Remember, you deserve to participate in school activities and receive support with the challenges IBD can bring. 💚 How can I tell whether it's stress or an IBD flare? This is an important question because stress and IBD symptoms can sometimes feel similar. Stress may contribute to tummy discomfort, nausea, or changes in bowel habits. However, a flare involves increased inflammation in your digestive system, and you cannot tell for certain what's happening just by how you feel. Some signs that your IBD may need medical attention include: Diarrhoea that is new or becoming more frequent. Blood in your poo. Increasing or persistent tummy pain. Waking at night to use the toilet. Ongoing fatigue or reduced appetite. Unexplained weight loss or fever. These symptoms can have different causes, but if you notice them, tell your parent or carer and contact your IBD team for advice. Seek urgent medical care if symptoms are severe or you feel seriously unwell. Never assume a flare is just stress. You deserve to have your symptoms taken seriously, even if you've also been feeling anxious or upset. And if your healthcare team confirms that your IBD is active, remember that it isn't your fault. Stress management may help you cope, but you may also need medical treatment to control the inflammation. 🫂 What if I'm feeling stressed all the time? Sometimes, stress can become difficult to manage, especially when you're dealing with a long-term condition. You might find yourself worrying most days, struggling to sleep, feeling constantly on edge, or losing interest in things you usually enjoy. If this sounds familiar, tell someone you trust. Your IBD nurse or doctor can help you understand how stress may be affecting you and discuss whether extra support could help. A psychologist or counsellor can teach you strategies for managing anxiety, coping with uncertainty and dealing with the emotional side of IBD. You don't have to wait until things feel unbearable before asking for help. Getting support for your mental health is not a sign that your IBD symptoms aren't real. You can have physical inflammation and emotional stress at the same time, and both deserve attention. ⭐ Remember this Your brain, emotions and gut are connected, so stress can sometimes affect how you feel when you have IBD. Learning to manage stress may help you cope with symptoms and feel more confident in everyday life. But you cannot control every symptom by staying calm, thinking positively or avoiding stressful situations. IBD is a real physical condition, and flares are not your fault. Be kind to yourself on difficult days, talk to someone when you need support, and let your healthcare team know if your symptoms change. You deserve support for both your physical health and your emotional wellbeing. 💚 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Feelings & Mental Wellbeing How to ask for mental health support when you have IBD Learn how to recognise when you need mental health support, find someone you trust to talk to, and ask for help when living with IBD feels overwhelming. Living with inflammatory bowel disease (IBD) can affect more than just your body. It can also affect how you feel, what you worry about, and how you handle everyday life. You might feel anxious about having a flare at school, frustrated about missing out on things with friends, or overwhelmed by appointments, medication, and symptoms. Sometimes, you might feel sad, worried, angry, or exhausted without really knowing why. If you've been struggling with your feelings, you might wonder whether you should tell someone. Perhaps you're worried they won't understand, you'll upset your family, or they'll think you're not coping. Asking for mental health support can feel scary, especially if you're not used to talking about your feelings. But you don't have to wait until things become unbearable before reaching out. Looking after your mental health is just as important as looking after your physical health. You deserve support with both. 💭 How can I tell if I need mental health support? Everyone has difficult days. Feeling upset before an appointment, worrying about a flare, or getting frustrated when you miss out on something is completely understandable. But sometimes, difficult feelings can start affecting your everyday life. You might notice that you: Feel worried or anxious a lot of the time. Feel sad, hopeless, or unlike yourself. Find it difficult to sleep because you're worrying. Stop enjoying activities you usually love. Avoid school, friends, or activities because of anxiety. Feel overwhelmed by having to manage IBD. Worry constantly about your symptoms or what might happen next. Feel lonely, misunderstood, or different from everyone else. Find it difficult to concentrate or get through your usual routine. You don't need to experience all these things to deserve help. Even one feeling that's becoming difficult to manage is worth talking about. You also don't have to know exactly what's wrong. Sometimes, you just know that things feel harder than they used to. 🫂 Who can I talk to? There are lots of people who can help you with your mental health. You don't have to figure everything out by yourself. A parent or carer If you feel comfortable talking to them, a parent or carer can be a good place to start. They might help you explain how you've been feeling, arrange an appointment, or find someone to talk to. Your IBD nurse or doctor Your healthcare team understands that living with IBD can be challenging. They can listen to your concerns and help you find the right support. A school counsellor or trusted teacher If your feelings are affecting school, friendships, or concentration, a school counsellor or teacher may be able to help. You don't need to wait until things become really difficult to speak to them. A psychologist or mental health professional A psychologist can help you understand your feelings and develop ways to manage anxiety, stress, low mood, or the emotional challenges of living with a long-term condition. Another trusted adult If talking to your parent or carer doesn't feel comfortable, you could speak to another adult you trust, such as a relative, coach, or school wellbeing worker. You can start with whoever feels safest to talk to. You don't have to tell everyone at once. 🗣️ What if I don't know what to say? Sometimes, the hardest part is finding the words. You might know that you're struggling but feel awkward saying it out loud. You might worry that you'll cry, forget what you wanted to say, or struggle to explain how you feel. That's okay. You don't need to have the perfect words. You could try saying: "I've been feeling really overwhelmed lately, and I think I need some help." "I'm finding it harder to cope with having IBD than I used to." "I've been worrying a lot, and it's starting to affect my sleep." "I don't really know what's wrong, but I haven't been feeling like myself." "Can you help me find someone I can talk to?" If saying it out loud feels too difficult, you could write it in a message or show someone this article. You can also write down a few things you've been experiencing before you talk to someone. This might help you explain what's happening if you feel nervous. You don't have to explain everything perfectly to deserve support. 😟 What if I'm embarrassed about asking for help? You might worry that other people will think you're weak, dramatic, or unable to cope. You might also feel that you should be able to manage your feelings yourself, especially if you've already had to deal with so much because of IBD. But needing help doesn't mean you've failed. Living with a long-term condition can involve a lot of uncertainty, change, and emotional stress. Even if you usually feel positive, there may be times when everything feels like too much. Talking to someone is a way of looking after yourself, not a sign that you can't cope. You don't need to wait until you're crying every day or struggling to get out of bed. Getting support early can help you understand your feelings before they become harder to manage. And remember, you don't have to be embarrassed if you cry while talking. It's okay to feel emotional when you're discussing something important. 💚 What if people don't understand how I feel? Sometimes, people might not realise how much IBD affects your mental health. They might focus on your physical symptoms and assume you're fine if your tests look good or you're not having a flare. They might say things like, "At least you're feeling better now," without realising that you could still be struggling emotionally. This can feel frustrating or lonely. If someone doesn't understand straight away, try explaining how things have been affecting you. You could say: "Even when my IBD is under control, I still worry about it." "I'm finding it difficult to deal with the emotional side of having IBD." "I don't need you to fix everything. I just need you to listen." "I know I might look okay, but I've been struggling inside." Sometimes, people need help understanding what you're going through. If the first person you talk to doesn't listen or take your feelings seriously, that doesn't mean your feelings don't matter. Try reaching out to another trusted adult or healthcare professional who can help. 🩺 Can my IBD team help with my mental health? Yes. Your IBD team can be an important source of support. Your doctor or IBD nurse can help you talk through concerns about symptoms, treatment, school, friendships, or worries about the future. They may also be able to refer you to a psychologist or another mental health professional who has experience supporting children and teenagers with long-term health conditions. Sometimes, physical symptoms and emotional wellbeing can affect each other. For example, anxiety can make it harder to cope with appointments, while pain, fatigue, and unpredictable symptoms can increase stress. This doesn't mean your symptoms are imaginary or that IBD is simply caused by stress. IBD is a physical condition, and you deserve proper medical care as well as emotional support. If you're worried about something, tell your healthcare team. They can help you work out what support might be useful. 🌱 What can I do while I'm waiting for support? Getting help can take time, but there are small things you can do in the meantime to support yourself. Talk to someone you trust. You don't have to carry difficult feelings on your own while you wait for an appointment. Make time for things you enjoy. Music, drawing, gaming, reading, or spending time with friends can give you a break from worrying. Write down your feelings. Keeping a journal can help you notice what you're experiencing and what might be making things harder. Try gentle ways to relax. Listening to music, taking a comfortable break, or practising slow breathing may help when you feel overwhelmed. Keep your routine flexible. Rest when you need to and ask for help when everyday tasks feel difficult. Be honest about how you're feeling. You don't have to pretend you're okay just to stop other people worrying. These ideas aren't a replacement for professional support if you're struggling, but they may help you get through difficult moments. You don't have to do everything on this list. Start with whatever feels manageable. 🧡 What if I need help urgently? If your feelings become overwhelming, you feel unable to keep yourself safe, or you have thoughts about hurting yourself, please tell a trusted adult straight away. You don't have to face these feelings alone, and help is available. If you're in immediate danger, call your local emergency number or go to the nearest hospital emergency department. If you're in Australia Kids Helpline: 1800 55 1800 — free, confidential support for young people aged 5–25, available 24/7. If you're in the USA 988 Suicide & Crisis Lifeline: Call or text 988 for free, confidential crisis support, available 24/7. If you're in the UK Childline: Call 0800 1111 for free, confidential support for anyone under 19. Available 24 hours a day. If you're in Canada Kids Help Phone: Call 1-800-668-6868 or text CONNECT to 686868 for support, available 24/7. 988 Suicide Crisis Helpline: Call or text 988 for crisis support, available 24/7. Canada If you're in New Zealand Youthline: Call 0800 376 633 or text 234 for support. Need to Talk?: Call or text 1737 to speak with a trained counsellor, available 24/7. You can also ask a parent or carer, IBD nurse, doctor, school counsellor, or another trusted adult to help you find support in your country Remember: You don't have to wait until things feel unbearable before asking for help. Your mental health matters, and you deserve to be listened to, supported, and taken seriously. 💚 ⭐ Remember this Asking for mental health support can feel like a big step, but you don't have to take it alone. You don't need to wait until things get really bad, know exactly what's wrong, or find the perfect words. You can start with a simple conversation with someone you trust. Living with IBD can be challenging, and your feelings deserve attention just as much as your physical symptoms do. You are not weak for struggling, and you are not a burden for asking for help. You deserve support, understanding, and the chance to feel better. 💚 This article is for general information and support only. It is not a substitute for professional mental health advice, diagnosis, or treatment. If you are struggling with your feelings, speak to a trusted adult or healthcare professional. If you feel unsafe or need urgent help, tell a trusted adult immediately or contact emergency services. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Friends & Relationships Explaining IBD to your friends Learn how to explain IBD to your friends, answer their questions, and talk about your condition without feeling embarrassed. Telling your friends that you have inflammatory bowel disease (IBD) can feel a little awkward. You might worry that they won't understand, ask embarrassing questions, or treat you differently. Maybe you've been diagnosed recently and aren't sure what to say. Or perhaps your friends already know you have IBD, but you find it hard to explain what it actually means. The good news is that you don't need to give your friends a big medical lesson. A simple explanation can help them understand what you're going through and how they can support you. Remember, you get to choose who you tell, what you share, and when you're ready to talk about it. 💬 What is IBD, and how do I explain it? IBD stands for inflammatory bowel disease. It is a condition that causes inflammation in the digestive system. The two main types are Crohn's disease and ulcerative colitis. You could explain it to your friends like this: “IBD is a condition that affects my digestive system. It can cause things like stomach pain, diarrhoea, tiredness, and other symptoms. Sometimes I feel okay, and other times I feel really unwell. I take medication and see doctors to help manage it.” You don't need to remember all the medical details. Just explain it in a way that feels comfortable for you. If your friends want to know more, you can answer their questions if you feel like it. You can also suggest they read an article about IBD if you don't want to explain everything yourself. 🩺 Why can't I just look healthy? One of the tricky things about IBD is that people can't always see when you're unwell. You might look completely fine on the outside while dealing with pain, fatigue, nausea, or other symptoms. Your friends might wonder why you need to sit out of an activity or go home when you don't look sick. You could explain: “IBD is an invisible illness, which means you can't always tell how I'm feeling just by looking at me. I might look fine but still be dealing with symptoms.” You don't have to prove that you're unwell for your symptoms to be real. 🚽 What if my friends ask about toilet problems? IBD can affect your bowel movements, and you might sometimes need to use the toilet urgently or more often than other people. Talking about this can feel embarrassing, especially if your friends like to joke around. But remember, bowel problems are a medical issue, and there's nothing shameful about them. If you're comfortable explaining, you could say: “IBD can affect how my digestive system works, so sometimes I need to use the toilet urgently. I can't always control when that happens, and I might need to leave class or an activity suddenly.” You don't have to share details about your bowel movements if you don't want to. It's okay to say, “I'd rather not talk about that part.” Your health is personal, and you get to decide which details you share. 🗣️ What if my friends ask questions? Your friends might have questions because they've never heard of IBD before. Some questions might be easy to answer, while others might feel a bit personal. Here are some things they might ask and ways you could respond. “Is IBD contagious?” “No. You can't catch IBD from me, and I can't pass it on to you.” “Will you always have it?” “IBD is a long-term condition. There are treatments that can help control it, and sometimes I can feel really well for long periods.” “Can you still eat normal food?” “Yes, but different foods can affect people with IBD differently. What I can eat might depend on how I'm feeling and what my healthcare team recommends.” “Why do you take medication?” “My medication helps manage my condition and control inflammation in my digestive system.” “Are you going to be okay?” “Lots of people with IBD go to school, have friends, play sport, and do the things they enjoy. Sometimes I have difficult days, but I have a healthcare team helping me manage it.” You don't have to know the answer to every question. It's completely fine to say, “I'm not sure,” or “You'd have to ask a doctor about that.” 😬 What if I feel embarrassed telling my friends? It's normal to feel nervous about sharing something personal, especially if you're worried people might react differently. You might find it easier to start by telling one friend you trust rather than talking to your whole group at once. You could choose a quiet moment when you're hanging out together and say something like: “There's something about my health I wanted to tell you. I have IBD, which affects my digestive system. Sometimes it makes things like school and hanging out a bit harder, and I wanted you to understand why.” You could also send a message if talking face-to-face feels too difficult. Take your time. You don't have to tell everyone at once, and you don't have to share more than you're comfortable with. 💚 What if my friends don't understand? Sometimes, friends might not understand straight away. They might ask the wrong questions, make an awkward comment, or struggle to understand why you sometimes have to cancel plans. This doesn't always mean they don't care. They might simply need time to learn about something they've never experienced. You could explain: “I know it's hard to understand if you haven't experienced it yourself, but IBD can make everyday things more difficult sometimes. It really helps when you listen and try to understand.” If someone makes a joke that hurts your feelings, you can tell them. For example, “I know you might not mean anything by it, but I don't find jokes about my illness funny.” Good friends don't have to understand everything perfectly, but they should respect your feelings and make an effort to support you. If someone repeatedly makes fun of your condition or treats you badly because of it, talk to a trusted adult. You deserve to feel safe and respected. 🫂 How can my friends support me? Your friends don't need to become experts in IBD to make a difference. Small acts of understanding can mean a lot. They can help by: Being understanding when you need to cancel plans or leave early. Not making jokes about your symptoms or medication. Including you in activities, even if you sometimes need to change plans. Listening when you need to talk. Checking in when you're having a difficult day. Treating you like the same person they have always known. You could even tell your friends what helps you most. Maybe you want them to check in on you, distract you when you're worried, or simply carry on as normal when you're feeling well. Everyone is different, so it's okay to explain what support looks like for you. 🌟 What if I don't want to tell everyone? You do not owe everyone an explanation about your health. You might decide to tell your closest friends but keep the information private from other people. You might want to explain your condition to a teacher without sharing every detail with your classmates. Those choices are yours to make. If someone asks why you need to leave class or miss an activity, you can give a simple answer, such as, “I've got a medical condition that sometimes affects me.” You don't have to share personal details just because someone is curious. If you need help managing IBD at school, your parent or carer and healthcare team can help you work out what information your school needs to know. ⭐ Remember this Explaining IBD to your friends can feel difficult, but you don't have to find the perfect words or tell everyone everything. Start with what feels comfortable, answer questions when you want to, and give your friends a chance to understand. The people who care about you should want you to feel included, respected, and supported. Having IBD might change some parts of your life, but it doesn't change who you are. You're still you, with your own personality, interests, friendships, and dreams. You deserve friends who accept you for who you are, IBD and all. 💚 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Understanding IBD What is IBD? What is IBD? Learn about inflammatory bowel disease (IBD), Crohn’s disease and ulcerative colitis, common IBD symptoms, flares, treatment and remission in this simple, kid-friendly guide for children and teens. 🩺 What is IBD? IBD stands for inflammatory bowel disease. It is a condition that causes inflammation, or swelling, inside parts of your digestive system. Your digestive system is the part of your body that helps you digest food and get the nutrients and energy you need. There are two main types of IBD: 🥐 Crohn's disease Crohn's disease can cause inflammation anywhere along the digestive system, from your mouth all the way down to your bottom. 🔴 Ulcerative colitis Ulcerative colitis causes inflammation in the large bowel, which is also called the colon and rectum. 🤔 So, why does IBD happen? Doctors don't know exactly why some people develop IBD. We do know that it isn't because you did something wrong. You didn't cause your IBD. IBD isn't contagious either, so you can't catch it from someone else. It isn't your fault. 🤕 What does IBD feel like? IBD can feel different for everyone. Some people might have: tummy pain or cramps diarrhoea needing to poo more often feeling very tired blood or mucus in their poo not feeling hungry losing weight or not growing as expected You might have some of these symptoms, all of them, or none of them. And sometimes you can look completely fine on the outside while your body is dealing with inflammation on the inside. 🔥 What is a flare? Sometimes the inflammation becomes more active. This is called a flare . During a flare, your symptoms might become worse or new symptoms might appear. Flares can be different for everyone. Some people have mild symptoms, while others can feel quite unwell. The good news is that there are treatments that can help control the inflammation and help you feel better. 💊 Can IBD be treated? Yes. There isn't currently a cure for IBD, but there are lots of treatments that can help control inflammation. Your IBD team will work with you and your family to find the treatment that is right for you. The goal is to help you feel well, keep the inflammation under control and help you get back to doing the things you enjoy. 🔄 Will I always have IBD? IBD is a long-term condition, which means you'll need to look after it over time. But having IBD doesn't mean you'll always feel sick. Many people with IBD have periods when they feel well and have few or no symptoms. This is called remission . Your treatment and regular check-ups can help your IBD team keep an eye on things and help you stay as well as possible. 🌟 And remember... Having IBD doesn't stop you from being you. You can still go to school, make friends, play sport, travel, have sleepovers, learn new things and dream about your future. Sometimes IBD might make things a little more complicated, but you don't have to figure it all out by yourself. You've got a whole team of people helping you along the way. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Sports & Activities Sport and exercise when you have IBD Learn how you can stay active with IBD, manage things like toilet access and tiredness, and know when it’s okay to slow down or take a break. Having Crohn’s disease or ulcerative colitis doesn't mean you have to miss out on sport! Whether you love swimming, playing soccer, riding your bike, dancing or running around with your friends, being active can still be part of your life with IBD. But some days, your body might feel different. You might get tired more quickly, have tummy pain or worry about needing the toilet while you're playing. The good news is that there are ways to make sport easier and more comfortable. Let's look at how you can stay active, prepare for tricky days and know when your body needs a break. 🏃 Why is exercise good for you? Moving your body can have lots of benefits, whether you have IBD or not. Being active can help you: 💪 Build stronger muscles and bones. 😊 Improve your mood and help you feel less stressed. 😴 Support better sleep. ⚡ Build strength and fitness over time. 👫 Have fun and spend time with friends. You don't have to be the fastest runner or the best player on your team. Exercise isn't about winning or being better than everyone else. It's about finding activities you enjoy and doing what feels right for your body. ⚽ Can I play sport if I have IBD? Yes! Many kids with IBD can take part in sport, PE lessons and other physical activities. You might enjoy team sports like soccer, netball, basketball or cricket. Or you might prefer swimming, cycling, dancing, walking or playing outside. There isn't one perfect sport for everyone with IBD. The best activity is one you enjoy and can manage comfortably. Your symptoms, energy levels and treatment can affect how much exercise feels right for you. If you have a flare, severe symptoms or other medical concerns, ask your IBD team what activities are suitable. You don't have to give up the sports you love just because you have IBD. Sometimes, you might simply need to make a few adjustments. 🚽 What if I need the toilet during sport? One of the trickiest things about IBD can be needing the toilet urgently, especially when you're in the middle of a game or training session. It can feel embarrassing to stop playing or ask your coach for a toilet break, but your health always comes first. Here are some things that might help: Find the toilets first. When you arrive at training, a game or a sports centre, find out where the nearest toilets are. Tell your coach. You don't need to share every detail, but letting your coach know you have a medical condition can help them understand why you might need to leave quickly. Have a plan. Work out how you can take a toilet break without worrying about getting into trouble. Keep supplies nearby. If you need them, bring spare underwear, wipes and a change of clothes. Speak up early. If your tummy starts feeling uncomfortable, let someone know rather than trying to ignore it. You deserve to participate in sport without feeling ashamed of your symptoms. 🔋 What if I get tired really quickly? Feeling tired is common for some kids with IBD. You might hear people call this fatigue. Fatigue is more than feeling a little sleepy. It can make your whole body feel exhausted, even when you haven't done much. You might notice that you run out of energy before your teammates or need more breaks than usual. If this happens, try these ideas: Take short breaks when you need them. Drink water regularly, especially when you're exercising. Eat regular meals and snacks that suit your needs. Let your coach know if you are struggling to keep up. Give yourself time to rest and recover after exercise. If you are feeling unusually tired or your energy levels have changed, tell your parent or carer. Your IBD team may want to check whether inflammation, low iron or another problem is contributing to your fatigue. Resting when you're tired isn't giving up. It is one way of looking after your body. 🔥 Can I play sport during a flare? When your IBD is flaring, exercise might feel much harder than usual. You might have tummy pain, diarrhoea, urgent toilet trips or very little energy. You may also find it difficult to concentrate on the game when you're worried about your symptoms. During these times, you might need to change your usual routine. You could: Take a break from training or competitive games. Try gentle activities, such as a short walk, if you feel up to it. Choose shorter sessions with plenty of rest. Stay home and rest if you're too unwell to participate. There is no need to push through a flare to prove that you are strong. If you have severe pain, significant bleeding, dizziness or signs of dehydration, stop exercising and tell an adult immediately. Seek medical advice promptly. Your parent or carer can help you contact your IBD team if you're unsure whether it's safe to continue your usual activities. 🛑 How do I know when to slow down? It can be tempting to keep going when your friends are still playing, especially if you don't want to miss out. But listening to your body is important. You might need to slow down or stop if you notice: You feel much more tired than usual. Your tummy starts hurting. You feel dizzy, weak or unusually breathless. You need the toilet urgently. You feel unwell or your symptoms are getting worse. Take a break, tell an adult and see how you feel. If you feel better after resting, you might be able to return to the activity, depending on what happened and how you're feeling. If you don't feel better, it's okay to stop for the day. If symptoms are severe, new or unusual, don't assume they are just part of having IBD. 🎒 Getting ready for sport A little preparation can help you feel more confident before training, PE or a big game. Here is a simple checklist to help you get ready. Pack a water bottle. Bring any supplies you might need. Know where the toilets are. Have a snack if you need one and it suits your dietary needs. Let your coach or teacher know about any support you might need. Check in with yourself and think about how you're feeling before you start. If you take medication, follow your usual treatment plan. Don't change your medicine or take extra doses to help you play sport. If you play in hot weather or exercise for a long time, ask your parent or medical team about staying hydrated, particularly if diarrhoea has made you lose extra fluids. 🏫 What about sport at school? School sport and PE can sometimes feel stressful when you have IBD. You might worry about needing the toilet during a lesson, not having enough energy to finish a game or having to explain why you can't participate. Your school can help make things easier. You could ask your parent or carer to speak with your teacher about: Allowing you to use the toilet whenever you need to. Giving you extra breaks when necessary. Offering alternative activities on days when you feel unwell. Making adjustments during a flare or after a hospital stay. Helping you return to sport gradually after being unwell. You should have the opportunity to participate in ways that are appropriate for your health, without feeling pressured to do more than you can manage. 💬 What if my teammates don't understand? Sometimes, teammates might wonder why you need to stop playing, miss training or sit out a game. You can choose how much you want to tell them. You could say: “I have a condition that sometimes makes me really tired.” “My tummy isn't feeling great, so I need a break.” “I need to use the toilet. I'll be back if I feel okay.” “I'm having a tough health day, so I'm taking it easy.” You don't have to explain all your symptoms or tell everyone about your IBD. If someone makes unkind comments or pressures you to keep playing when you're unwell, talk to your coach, teacher or another trusted adult. Your teammates don't need to understand everything about IBD to treat you with kindness and respect. 🌟 What if I can't do as much as I used to? This can be one of the hardest parts of living with IBD. Maybe you used to play an entire game without stopping, but now you need more breaks. Perhaps you have missed training because you've been unwell, or you're worried about losing your place on the team. It's okay to feel disappointed. Remember that your energy and abilities can change over time. Having to slow down now doesn't mean you'll always feel this way. Focus on what you can do today, rather than comparing yourself with what you could do before. Celebrate the little wins, whether that's getting through PE, going to training or simply enjoying a walk with a friend. If you have been away from sport for a while, your parent or medical team can help you work out how to return safely and build up gradually. 💙 Remember, sport should be fun Having IBD doesn't mean you have to stop being active or give up the activities you love. Some days, you might feel ready to run, jump and play for hours. Other days, you might need a shorter session, a few extra toilet breaks or a rest at home. Both are okay. Listen to your body, ask for help when you need it and remember that you don't have to push yourself to keep up with everyone else. Being active with IBD isn't about doing everything. It's about finding what works for you, one day at a time. 💙 Previous Next Found this helpful? 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School Going to school with IBD Practical tips and support for managing IBD at school, from toilet access and flare days to talking with teachers and handling questions from friends. Going to school when you have inflammatory bowel disease (IBD) can sometimes be tricky. You might need to use the toilet more often, feel tired, miss school because you are unwell or worry about what your classmates might think. The good news is that there are ways to make school easier. With a little planning and support from the adults around you, you can feel more comfortable, stay involved in school activities and focus on being a kid. Here are some practical tips to help you manage IBD at school. 🎒 Get ready for the school day Some days, getting ready for school feels easy. On other days, your tummy might hurt, you might feel tired or you might be worried about needing the toilet. A little preparation can help you feel more confident. Pack anything you need for the day, such as medication approved for school, a water bottle and spare underwear. Keep a small emergency kit in your school bag with wipes, tissues, spare underwear and a plastic bag for dirty clothes. If you have a medical appointment or have been feeling unwell, let a parent or trusted adult know how you are feeling before school. Remember that you do not have to feel perfect to have a good day. You can also ask your parent or carer to help you make a simple checklist so you do not have to remember everything yourself. 🚽 Make toilet trips easier IBD can make you need the toilet urgently, sometimes with very little warning. You might also need to go more often than your classmates. This is a normal part of living with IBD, and you should never feel embarrassed about needing the toilet. Here are some things that can help: Have a toilet pass. Ask your parent or carer and school to arrange permission for you to leave class whenever you need to. Know where the toilets are. Find out which toilets are closest to your classroom, playground and other places you visit during the day. Choose a trusted teacher. Make sure at least one teacher knows about your IBD and understands why you might need to leave quickly. Keep supplies nearby. If it helps, keep spare clothes and other essentials somewhere you can access easily. You do not need to explain your symptoms to your whole class. Your health information is personal, and you can choose who you tell. 🤒 What if you are having a flare? A flare is when your IBD becomes more active and your symptoms get worse. You might have tummy pain, diarrhoea, urgent toilet trips or feel much more tired than usual. During a flare, school can feel harder than normal. You might struggle to concentrate, feel uncomfortable sitting in class or worry about having an accident. If this happens, remember: Tell a parent, carer or trusted adult how you are feeling. Ask for extra toilet breaks and somewhere quiet to rest if needed. Take breaks when you need them, rather than trying to push through everything. Let your teacher know if you are struggling to finish your work. Stay home when you are too unwell to attend school, following advice from your family and medical team. You are not being lazy if you need a break. Your body is dealing with a real illness, and resting when you need to is important. If your symptoms suddenly become severe, you have significant bleeding, severe abdominal pain or signs of dehydration, tell an adult immediately so you can get medical advice. 🧑🏫 Talking to your teachers Your teachers do not need to know every detail about your IBD, but it can help if they understand how it affects you. A teacher who knows about your condition may be able to help with toilet access, missed schoolwork, tiredness and times when you are feeling unwell. You could ask a parent or carer to help explain things to your teacher. You might want them to know: You may need to leave class quickly to use the toilet. You might sometimes miss school for appointments or because you are unwell. You can feel tired or have trouble concentrating on difficult days. You may need extra time to complete work after an absence. You might need adjustments for sport, excursions, camps or exams. You do not have to explain everything yourself. It is okay to let an adult help you. 💬 What if your friends ask questions? Sometimes friends notice things, like you leaving class a lot, missing school or not feeling well during lunchtime. They might ask questions because they are curious or because they care about you. You can decide how much you want to share. You do not owe anyone a full explanation. Here are a few things you could say: If someone asks why you use the toilet so much: “I have a health condition that sometimes makes me need the toilet more often.” If someone asks why you missed school: “I wasn't feeling well, so I had to stay home.” If someone asks what IBD is: “It's a condition that affects my digestive system. Sometimes it makes me feel sick.” If you do not want to talk about it: “I'd rather not talk about that right now.” You can keep your answers short. You can also talk to a trusted adult if someone keeps asking questions that make you uncomfortable. ❤️ Dealing with embarrassment and worry It is understandable to feel embarrassed about needing the toilet urgently, having tummy pain in class or worrying about an accident. You might worry about what your friends think or feel different from everyone else. If these feelings happen to you, remember that you have done nothing wrong. IBD is not your fault, and needing extra support does not make you different in the ways that matter. A few things that might help are: Talking to someone you trust about what is worrying you. Making a plan for what to do if you suddenly need the toilet. Keeping spare clothes and supplies nearby so you feel prepared. Spending time with friends who make you feel comfortable and accepted. Reminding yourself that you are much more than your IBD. If worries about school are making it difficult to attend or enjoy your day, tell a parent, school counsellor or another trusted adult. You deserve support with how you are feeling, too. 📚 Catching up when you miss school Sometimes IBD means missing lessons, tests, sports days or even whole weeks of school. Coming back can feel overwhelming when everyone else seems to have moved on. You do not have to catch up on everything in one day. Try these tips: Ask your teacher to help you work out which assignments are most important. Break big tasks into smaller, manageable steps. Ask for extra time if you need it. Focus on one subject or task at a time. Take breaks when you are tired. Your teacher can help you make a plan that gives you time to recover while keeping up with your learning as much as possible. Remember: missing school because of IBD is not your fault. You deserve the chance to catch up without feeling like you have to do everything at once. ⚽ Joining in with school activities Having IBD does not mean you have to miss out on the fun parts of school. You can still enjoy sport, excursions, school camps, celebrations and time with your friends. You might just need a little extra planning. Before an activity, think about what would help you feel comfortable. Find out where the toilets are. Let a teacher know if you might need extra breaks. Bring any supplies you may need. Talk to your parent or medical team if you are unsure whether an activity is suitable when your symptoms are active. Remember that it is okay to sit something out if you are feeling unwell. You should have the opportunity to participate as much as you can, with support that meets your needs. 🤝 Finding adults who can help You do not have to manage IBD at school on your own. It can help to identify a few adults you feel comfortable talking to, such as: Your classroom teacher. The school nurse, if your school has one. A school counsellor. A year-level coordinator or other trusted staff member. Your parent or carer. Together, you can make a plan for toilet access, flare days, medication arrangements, missed work and other things that affect your school day. If you are unsure how to start the conversation, you could say, “Sometimes my IBD makes school difficult, and I need a little extra help.” That is enough to get things started. 🌟 Remember, you belong at school IBD can make some school days harder than others, but it does not define who you are. You are still a student, a friend, a teammate and a kid with interests, talents and dreams. You deserve to feel safe at school, to learn, to have fun and to ask for help when you need it. Some days will be easier than others, and that is okay. Take things one day at a time, speak up when something is difficult and remember that you do not have to figure everything out by yourself. You have IBD, but IBD does not have to stop you from being you. 💙 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Flares Why am I so tired? Feeling exhausted is common with IBD. Learn why IBD can make you tired, what can contribute to fatigue, and when it’s important to tell your parent, carer, or IBD team. Do you ever feel exhausted even when you've had a good night's sleep? Maybe you struggle to get out of bed in the morning, feel sleepy in class or run out of energy when your friends still want to play. If you have Crohn's disease or ulcerative colitis, feeling tired can be a common part of living with IBD. You might hear people call this fatigue. It's more than feeling a little sleepy. Fatigue can make your whole body feel worn out, leaving you with very little energy to do the things you enjoy. If this sounds like you, you're not lazy, and you're not imagining it. There are reasons why IBD can make you feel so tired, and there are ways to get help. 🔋 What is fatigue? Fatigue is when you feel unusually tired, weak or exhausted, even after resting. You might notice that you: Feel tired when you wake up, even after sleeping all night. Find it hard to concentrate at school. Run out of energy more quickly than your friends. Need to rest after doing things that usually feel easy. Feel too tired to play sport or see your friends. Get grumpy, frustrated or upset when you're exhausted. Fatigue can look different for everyone. Some days, you might have plenty of energy. On other days, even getting dressed or walking around school can feel like hard work. Being tired isn't a sign that you're not trying hard enough. Your body may be dealing with things that other people can't see. 🦠 How can IBD make me tired? There isn't always just one reason for feeling exhausted. Several things related to IBD can affect your energy levels. 🔥 Inflammation in your bowel When you have IBD, your immune system can cause inflammation in your digestive system. Your body is working hard to manage that inflammation, and this can leave you feeling tired. You might experience fatigue during a flare, but inflammation can sometimes still be present even when your symptoms seem better. 🩸 Low iron Iron helps your body make haemoglobin, which carries oxygen around your body in your blood. If you have IBD, you might have low iron because of bleeding in your bowel, difficulties absorbing nutrients or not getting enough iron from your food. If your iron levels become too low, you can feel exhausted, weak or dizzy. Low iron can also happen before you develop anaemia. Your medical team can check your iron levels with blood tests and help you work out whether you need treatment. 🚽 Diarrhoea and dehydration If you have frequent diarrhoea, your body can lose more fluid than usual. Not having enough fluid can make you feel weak, dizzy and tired. It can also be harder to stay hydrated when you're unwell or struggling to eat and drink normally. Drinking regularly and following your medical team's advice about replacing lost fluids can help. 🌙 Poor sleep Tummy pain, needing the toilet during the night or worrying about your IBD can make it difficult to get enough good-quality sleep. Even if you spend plenty of time in bed, broken sleep can leave you feeling exhausted the next day. 🍎 Not getting enough nutrients When your bowel is inflamed, you might struggle to eat enough food or absorb certain nutrients. Your body needs enough energy, protein, vitamins and minerals to grow, learn, play and recover. If you're not getting what you need, it can contribute to feeling tired. 🏫 Why am I tired even when I feel well? This can be one of the most frustrating things about having IBD. You might not have tummy pain or diarrhoea anymore, so you expect to feel completely normal. But you're still exhausted. There are a few possible reasons for this. You might still have inflammation in your bowel. Your iron levels might be low. Your body might still be recovering after a flare. You might not be sleeping well. You might be feeling stressed or worried. Sometimes, several of these things happen together. If you're still feeling very tired, tell your parent or carer. Your IBD team can help work out what's causing it rather than assuming it's just part of having IBD. 🎒 How can I manage tiredness at school? Feeling tired at school can make everything harder. You might struggle to listen to your teacher, finish your work or keep up with your classmates. Here are some things that might help. Tell your teacher. Let them know if you're struggling to concentrate or keep up because of fatigue. Take breaks when you can. Short breaks can help you manage your energy throughout the day. Break up big tasks. Doing a little work at a time can feel more manageable than trying to finish everything at once. Ask for help catching up. If you've missed school or need extra time, ask your teacher to help you make a plan. Rest after school. You might need some quiet time before doing homework, sport or other activities. You don't need to push yourself to do everything your classmates do. It's okay to need extra support. ⚽ What if I'm too tired to play? You might love sport, dancing, swimming or playing outside, but fatigue can sometimes make these activities feel impossible. It can be disappointing when you want to join in but your body doesn't seem to have enough energy. Try to listen to what your body is telling you. Choose activities that feel manageable on lower-energy days. Take breaks when you need them. Drink enough fluids, especially when you're active. Give yourself time to recover after exercise. Let your coach or teacher know if you need to slow down. You don't have to give up the activities you love. You might just need to adjust how much you do on different days. If you're unusually exhausted, dizzy or weak, stop and tell an adult. If fatigue is persistent or affecting your ability to participate in everyday activities, ask your parent or carer to contact your medical team. 🌙 What can I do to feel less tired? There isn't one trick that works for everyone, but some everyday habits can support your energy levels. 🛏️ Make sleep a priority Try to have a regular bedtime and wake-up time. Give yourself time to wind down before bed, and tell an adult if tummy symptoms or worries are keeping you awake. 🥪 Eat regularly Your body needs enough food to grow and have energy. Try to eat regular meals and snacks that suit your needs and any advice from your dietitian. If eating is difficult or you have been losing weight, tell your parent or carer and medical team. 💧 Drink enough fluids Keep a water bottle nearby and drink regularly throughout the day. If you have diarrhoea, ask your medical team whether you need an oral rehydration solution to replace lost fluids and salts. 🧘 Take time to relax Stress and worry can use up a lot of your energy. Listening to music, drawing, reading or spending time with someone you trust can help you unwind. 🩺 Keep up with your appointments If fatigue continues, your medical team might check for inflammation, low iron, anaemia, nutritional deficiencies, sleep problems or other possible causes. Getting the right treatment for the cause of your fatigue is often more helpful than simply trying to rest more. 💬 When should I tell someone? It's important to tell your parent or carer if you're feeling tired a lot, especially if the tiredness is new, getting worse or stopping you from doing things you enjoy. Let them know if you also have symptoms such as: Feeling dizzy or faint. Looking unusually pale. Becoming breathless more easily than usual. Having more diarrhoea or blood in your poo. Losing weight without trying. Struggling to get through a normal school day. Your medical team may want to check your symptoms and arrange blood tests. If you have severe weakness, fainting, difficulty breathing, significant bleeding or signs of severe dehydration, seek urgent medical care. You don't need to wait until you're completely exhausted before asking for help. 💙 Remember, it's not your fault Living with IBD can take a lot out of you, even when other people can't see it. You might feel frustrated when your friends have energy to spare and you just want to lie down. You might feel guilty about missing sport or worry that people think you're being lazy. But fatigue is real, and you deserve to be taken seriously. You don't have to prove how tired you are, and you don't have to push through every difficult day. Tell someone how you're feeling, give yourself permission to rest when you need to, and work with your medical team to find out what's causing your tiredness. Your energy levels don't determine your worth. You're doing your best, and that's enough. 💙 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Living with IBD Can I still play sport? Find out how you can stay active and enjoy sport while living with IBD, including tips for managing toilet access, hydration, medicines, flares, and competitions. Having Crohn’s disease or ulcerative colitis doesn’t mean you have to give up the sports you love. You might need to make a few changes along the way, but there are lots of ways to stay active, have fun and be part of a team while living with IBD. You might sometimes feel tired, have tummy pain or need to use the toilet urgently. You might also have days when you feel great and can do everything you enjoy. Everyone’s experience with IBD is different, so it’s important to listen to your body and work out what works best for you. Let’s look at how you can keep playing sport while looking after yourself. ⚽ Can I still play sport with IBD? Yes! Many kids with IBD enjoy sports and physical activities, including swimming, soccer, basketball, dancing, cycling and running. Being active can help you build strength, improve your fitness, spend time with friends and have fun. You don’t have to be the best player on the team or compete at a high level. The most important thing is finding an activity you enjoy. Some days, you might have lots of energy and feel ready to play. On other days, you might need to take it easier. Both are okay. 💙 What if I feel tired? Fatigue is common for people living with IBD. It can make sport feel harder, even when you really want to play. If you’re feeling tired, you could: Take breaks when you need them. Start with a shorter training session. Choose a lighter activity on days when your energy is low. Let your coach know if you’re struggling. Make sure you get enough rest and sleep. If you’re feeling unusually tired or your fatigue is stopping you from doing the things you enjoy, tell your parent or carer. Your IBD team can help check whether something, such as inflammation or low iron, might be contributing. Remember, taking a break doesn’t mean you’re giving up. It means you’re looking after yourself. 🚽 What about needing the toilet? One of the trickiest parts of playing sport with IBD can be worrying about needing the toilet urgently. You might feel nervous about being far away from a bathroom, especially during a game or competition. Here are some things that might help: Find the toilets first. When you arrive at training or a competition, check where the nearest toilets are. Talk to your coach. If you feel comfortable, explain that you have a health condition that sometimes means you need the toilet quickly. Have a plan. Ask whether you can leave the field, court or pool when you need to. Pack what you need. You might want to bring spare underwear, wipes and a change of clothes. Don't ignore the urge. If you need to go, let someone know and use the toilet rather than trying to hold on. You don't have to tell your whole team about your IBD. You can choose to tell just your coach or another trusted adult. 💧 Why is drinking water important? When you exercise, you lose water through sweat. If you also have diarrhoea, you can lose even more fluid. Drinking enough water is especially important when you have IBD. Try to: Drink water before, during and after exercise. Take a water bottle to training and competitions. Drink more when it's hot or you're sweating a lot. Tell an adult if you're feeling dizzy, unusually weak or very thirsty. If you have frequent diarrhoea or are losing a lot of fluid, you might need an oral rehydration solution rather than water alone. Ask your parent or carer and IBD team what is best for you. 💊 Do my medicines affect playing sport? Some IBD medicines can affect how you feel, while others help control inflammation so you can get back to doing the things you enjoy. It's important to keep taking your medicines as prescribed, even when you're feeling well. Don't skip a dose because you have a game or competition. If you notice that your medicine makes you feel unwell, tired or dizzy, tell your parent or carer and your IBD team. They can help you work out what's happening and whether anything needs to change. 🌧️ What if I'm having a flare? During a flare, you might have more tummy pain, diarrhoea, fatigue or other symptoms. You might feel frustrated if you have to miss training or sit out a game, especially when your friends are playing. But resting when you're unwell is an important part of looking after yourself. During a flare, you may need to: Take a break from intense exercise. Choose gentle activities if you feel up to them. Rest when you're tired. Drink enough fluids. Follow the advice from your IBD team. If your symptoms are getting worse, you have significant pain or you're struggling to keep fluids down, tell your parent or carer and contact your healthcare team. Don't feel pressured to play through symptoms just because your team needs you. Your health comes first, and you can return to sport when you're ready. 🏆 What if I have a big game or competition? It can be frustrating when IBD gets in the way of something you've been looking forward to. You might worry about needing the toilet halfway through a race, feeling tired during a match or having to pull out at the last minute. Planning ahead can help you feel more confident. Before a competition, you could: Check where the toilets are. Pack water, snacks that suit your needs and any supplies you might need. Talk to your parent or carer about how you're feeling. Make a plan with your coach for toilet breaks or sitting out if necessary. Get enough rest the night before. If you're feeling unwell on the day, talk with your parent or carer about whether it's safe to participate. You don't have to push yourself just because it's an important event. And remember, missing one game doesn't make you a bad teammate. There will be other opportunities to play. 🗣️ Should I tell my coach about my IBD? You don't have to tell everyone about your health, but having a trusted adult at sport who understands your needs can make things easier. You could tell your coach that you sometimes need urgent toilet breaks, may need extra rest or might occasionally miss training when you're unwell. You can keep your explanation simple. For example, you could say: “I have a health condition that sometimes affects my stomach and energy levels. I might need to use the toilet quickly or take a break sometimes.” Your parent or carer can help you decide what to share and how to explain it. A supportive coach should take your needs seriously and help you participate as safely and comfortably as possible. ❤️ What if I can't play as much as I used to? It can be hard when your body doesn't let you do everything you want to do. You might need to miss training, reduce how much you play or take a break from your favourite sport while you're unwell. It's okay to feel disappointed. You don't have to pretend that it's easy. Try to remember that your ability to play sport doesn't determine your worth. You're still a great teammate, friend and person, even when you need to sit on the sidelines. You might also discover new activities that suit how you're feeling. Some days, that could mean a full training session. Other days, it might mean a gentle walk or cheering on your team. If you have ongoing symptoms that make it difficult to exercise, talk to your IBD team about what might help. 🌟 Keep moving at your own pace Having IBD doesn't mean you have to give up sport or the activities you love. You might need to plan ahead, take breaks or change your routine sometimes, but you can still find ways to be active and enjoy being part of a team. Listen to your body, ask for help when you need it and remember that resting is part of being a good sport, too. Most importantly, choose activities that make you happy. You deserve to have fun, make memories and enjoy being active, whatever your IBD journey looks like. 💙 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Medication Understanding your IBD medicines Understanding what your IBD medicines do, why you need them, and how they help keep your bowel healthy. If you have Crohn’s disease or ulcerative colitis, you might need to take medicine to help you feel better and keep your bowel healthy. You might take tablets, swallow capsules, use liquids, have injections or visit the hospital for an infusion. Sometimes, taking medicine can feel like a lot to deal with. You might wonder why you need it when you feel fine, or why you have to keep taking it when your tummy isn't hurting anymore. Let's look at what your IBD medicines do, why they are important and how they help you stay well. 🧠 What do IBD medicines actually do? IBD causes inflammation in your digestive system. Inflammation happens when your body's immune system becomes overactive and causes swelling and irritation in your bowel. This inflammation can cause symptoms such as tummy pain, diarrhoea, blood in your poo and feeling very tired. IBD medicines work in different ways to help control this inflammation. Depending on your medicine, it might: Calm down inflammation in your bowel. Help your bowel lining heal. Reduce symptoms such as tummy pain and diarrhoea. Help prevent future flares. Keep your IBD under control so you can get on with everyday life. Different medicines do different jobs, and your medical team chooses the ones that are right for you. 🌱 Why do I need medicine if I feel fine? This is a really good question! When your IBD is under control, you might feel completely normal. You might have no tummy pain, no diarrhoea and plenty of energy. But even when you feel well, there can sometimes still be inflammation inside your bowel. Your medicine helps keep that inflammation under control and gives your bowel the best chance to heal and stay healthy. Think of it like looking after a garden. Even when the plants look healthy, you still need to water them and take care of them to help them keep growing. Feeling better doesn't always mean your IBD has disappeared. Keep taking your medicine as prescribed, even when you feel well, unless your medical team tells you otherwise. 🔥 What happens when I have a flare? A flare happens when your IBD becomes more active. You might notice that your tummy hurts more, you need the toilet more often, or you feel tired and unwell. During a flare, your medical team might change your treatment or give you extra medicine to help calm the inflammation. You might need to: Have some tests to check how much inflammation is in your bowel. Take a different medicine or adjust your treatment. Have extra appointments with your IBD team. Rest more while your body recovers. Sometimes, your symptoms improve before the inflammation has completely settled. Your medical team can help check how well your treatment is working. If your symptoms are getting worse, tell your parent or carer and let your medical team know. Don't change your medicine or take extra doses by yourself. 💊 What are the different types of IBD medicines? There are several types of medicines used to treat Crohn's disease and ulcerative colitis. You might take one medicine or a combination of different medicines. Here are some of the main types. 🩹 5-ASAs Medicines such as mesalazine help reduce inflammation in the bowel. They are commonly used for ulcerative colitis and may be taken as tablets, granules or rectal treatments. You might recognise a medicine called Pentasa. 🛡️ Immunomodulators Medicines such as azathioprine help control the immune system so it causes less inflammation in your bowel. They can take time to work, so your medical team will monitor how you are doing and check your blood tests while you take them. 🎯 Biologics and other advanced medicines These medicines target particular parts of the immune system involved in inflammation. Some are given as injections at home, while others are given through an infusion at a hospital or clinic. Some advanced medicines can also be taken as tablets. They can help control IBD when other treatments have not worked well enough or when stronger treatment is needed. 🚨 Steroids Steroids, such as prednisolone, can help reduce inflammation quickly during a flare. They are usually used for short periods because taking them for a long time can cause unwanted side effects. They are not usually the medicine used to keep IBD under control long term. Your medical team will explain how to take them and how to reduce the dose safely if needed. ⏰ Why do I have to take my medicine regularly? Taking your medicine as prescribed helps it do its job properly. If you miss doses or stop taking your medicine, your IBD may become active again. This can increase the chance of a flare and may make it harder to keep your bowel healthy. Here are some ways to remember your medicine: Set a reminder. Ask a parent or carer to help you set an alarm. Use a checklist. Tick off each dose as you take it. Build a routine. Take your medicine at the time recommended by your medical team. Ask questions. If you don't understand why you need a medicine, ask your parent, doctor or pharmacist to explain it. If you forget a dose, ask your parent or carer to check the instructions or contact your pharmacist or medical team. Don't double up on doses unless they specifically tell you to. 🩺 What about side effects? All medicines can have side effects, and IBD medicines are no different. Some medicines can cause tummy upset, headaches or other problems. Others can affect your immune system or require regular blood tests to check that everything is okay. This doesn't mean you will experience side effects. Everyone responds differently to medicine. It's important to: Tell an adult if you notice something unusual after taking your medicine. Attend your blood tests and appointments. Ask your medical team what side effects to look out for. Check with your doctor or pharmacist before starting new medicines or supplements. Some medicines need extra precautions to help keep you safe. Your medical team can explain what applies to your treatment. Never stop taking your medicine on your own because you are worried about side effects. Talk to your parent or carer and medical team so they can help you work out what to do. 🧪 Why do I need blood tests and appointments? You might wonder why you need blood tests when you already feel better. Blood tests and other checks help your medical team understand how your IBD is doing and whether your treatment is working safely. Depending on your medicine, they might check: Whether your medicine is causing any problems. How your body is responding to treatment. Whether there are signs of inflammation. Whether your blood counts, liver function or other measurements are within the expected range. Sometimes, your medical team might also ask for a poo sample to measure inflammation in your bowel. This can help them understand what is happening inside, even when you feel well. These checks are an important part of looking after your IBD. 🤔 What if I don't like taking my medicine? That's okay. Taking medicine every day can be annoying, especially when you would rather be doing something else. You might dislike the taste, find tablets difficult to swallow or feel frustrated that you need medicine when your friends don't. If this sounds like you, there are things you can do: Tell your parent or carer what you find difficult. Ask your pharmacist whether your medicine comes in another form. Ask your medical team if there are different treatment options. See if you can make taking your medicine part of a routine that works for you. You don't have to pretend that taking medicine is easy. It's okay to feel frustrated, and it's okay to ask for help. 💬 Questions you can ask your IBD team Understanding your medicine can help you feel more confident about looking after yourself. At your next appointment, you could ask: What is my medicine called? What does it do inside my bowel? How long will it take to work? What should I do if I forget a dose? What side effects should I look out for? Will I need blood tests? How will we know if my medicine is working? What should I do if I get sick while taking it? You don't need to know all the answers straight away. Learning about your treatment is something you can do one step at a time. 💙 Remember, your medicine is there to help you IBD medicines are an important part of keeping inflammation under control, helping your bowel heal and reducing the chance of future flares. You might not always notice your medicine working, especially when you feel well. But that doesn't mean it isn't doing something important. Keep taking your medicine as prescribed, go to your appointments and speak up if something doesn't feel right. And remember, you are allowed to ask questions. Understanding your treatment is one way to become more confident in managing your IBD. You've got this! 💙 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Living with IBD Do I have to tell my friends? Learn whether you have to tell your friends about having IBD, how to decide who you feel comfortable telling, and what you can say if they ask questions. Having Crohn’s disease or ulcerative colitis can sometimes make you feel different from other kids. You might need to use the toilet more often, miss school when you're unwell or take medicine that your friends don't need. You might wonder whether you should tell your friends that you have IBD. What if they don't understand? What if they ask lots of questions? What if they treat you differently? If you've had these thoughts, you're not alone. The good news is that you get to decide who you tell about your IBD. You don't have to tell everyone, and you don't have to explain everything about your health. Let's look at how you can decide what feels right for you. 🤔 Do I have to tell my friends? No. You don't have to tell your friends about having IBD if you don't want to. Your health is personal, and you get to choose how much you share with other people. Some kids feel comfortable telling their friends because they want them to understand what they're going through. Others prefer to keep their IBD private, and that's okay, too. You might also feel differently at different times. You could tell one close friend now and decide to tell other friends later. There is no right or wrong choice. Remember, though, that it can help to have at least one trusted adult, such as a parent, carer or teacher, who knows about your IBD and can support you when you need help. 👫 Who should I tell? If you're thinking about telling someone, you don't have to start with your whole friendship group. You could begin with one person you trust. Think about your friends. Who listens when you have a problem? Who makes you feel comfortable being yourself? Who is kind when someone else is having a difficult day? You might choose to tell: Your best friend. A friend you spend lots of time with. Someone who has noticed you've been missing school. A friend who you think would understand and support you. You don't need to tell someone just because they ask questions or because you think you should. Take your time and choose what feels right for you. 💬 What can I say if I want to tell them? You don't need to make a big announcement or know exactly what to say. You could tell your friend when you're hanging out together, talking privately or messaging them. Here are a few ways you could explain it: Keeping it simple: “I have something called IBD. It affects my digestive system and sometimes makes me feel sick.” Explaining why you've missed school: “I've been away because my IBD has been playing up.” Explaining why you need the toilet: “My condition sometimes means I need to use the toilet really quickly.” Asking for understanding: “Sometimes I might have to cancel plans or leave early because I'm not feeling well. It's not because I don't want to hang out with you.” You can share as much or as little as you want. You might find it helpful to explain that IBD isn't contagious, so your friends can't catch it from you. ❓ What if they ask lots of questions? Your friends might be curious because they haven't heard of IBD before. They might ask what it is, why you have it or whether you'll always have it. It's okay if you don't know all the answers. You're still learning about your condition yourself! You could say: “It's a condition that causes inflammation in my bowel.” “Sometimes it makes me feel really tired or gives me tummy pain.” “I'm still learning about it, too.” “You can ask me questions, but I might not know all the answers.” If a question makes you uncomfortable, you don't have to answer it. You can simply say, “I'd rather not talk about that.” A good friend should respect your boundaries, even if they don't fully understand your condition. 😟 What if I'm worried they'll treat me differently? It's normal to worry about how people might react when you tell them something personal. You might be scared they'll feel sorry for you, think you're different or stop inviting you to do things. Sometimes, friends might not know what to say at first because they don't understand IBD. They may need a little time to learn about it. But having IBD doesn't change who you are. You're still the same person who loves your favourite games, laughs at silly jokes, enjoys spending time with friends and has things you're excited about. You don't need to hide who you are to make other people comfortable. If someone reacts unkindly, remember that their reaction doesn't mean you've done anything wrong. Talk to a trusted adult if someone teases you, shares your private information or makes you feel uncomfortable. The friends who care about you should want you to feel safe being yourself. 🤫 What if I want to keep my IBD private? That's completely okay. You might not feel ready to talk about it, or you might simply prefer to keep your health information to yourself. If someone asks why you've missed school or why you need to leave somewhere, you can give a short answer without explaining everything. For example: “I wasn't feeling well.” “I have some health stuff going on.” “I needed to go to an appointment.” “I'd rather not talk about it.” You can also change the subject if you don't want to continue the conversation. You don't owe everyone your personal story, and you can decide what you're comfortable sharing. Just remember that keeping your IBD private from friends doesn't mean you have to manage it alone. It's important to have trusted adults who can help you with your health and any support you need. ❤️ What if my friends don't understand? IBD can be difficult to understand if you've never experienced it yourself. Your friends might not realise why you sometimes cancel plans, need extra toilet breaks or feel too tired to play. You could try explaining that IBD can affect you differently from one day to the next. Some days you might feel great, while other days you might need more rest or help. You could say: “Sometimes I look completely fine, but I might still feel really tired or have tummy pain. I can't always control how I feel, so I might need to change plans sometimes.” You don't have to convince everyone to understand every part of IBD. What matters is that your friends treat you with kindness and respect. 🌟 What if I want to tell them, but I'm scared? You don't have to rush. If you want to tell a friend but feel nervous, try practising what you want to say with a parent or another trusted adult first. You could also write a message instead of saying it face-to-face if that feels easier. Start small. You might tell one friend you trust and see how you feel before deciding whether to share more. It's okay to feel nervous and still choose to talk about it. It's also okay to decide you're not ready yet. There is no deadline for telling your friends. 💙 Remember, it's your story to share Having IBD is one part of your life, but it doesn't define you. You deserve friends who make you laugh, include you in activities and accept you on the days when you're feeling great and the days when you're struggling. You can tell your friends about your IBD, keep it private or share different amounts with different people. You get to choose who knows your story, when you tell them and how much you share. Whatever you decide, you deserve kindness, understanding and friendship. 💙 Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like

Australian School Resources Practical information and support to help students with IBD thrive at school. School camps, excursions and sport Learn how Australian schools can help children with Crohn’s disease or ulcerative colitis participate in camps, excursions and sport. Discover practical tips for planning medication, ensuring toilet access, managing symptoms and working with teachers to keep activities safe and inclusive. Read More School support plans & adjustments Learn how Australian schools can support students with Crohn’s disease or ulcerative colitis through individual support plans, toilet access, flexible deadlines, adjustments during flares, and help with absences. Includes guidance for working with your child’s school and a link to our free IBD School Support Plan download. Read More School attendance & catching up on learning Learn how to manage school absences caused by IBD flares, medical appointments and hospital stays. Discover practical ways to catch up on schoolwork, arrange flexible deadlines, support recovery and help your child return to the classroom with confidence. Read More IBD and Australian schools Learn how Australian schools can support students with IBD, including toilet access, absences, fatigue, medication, exams, schoolwork, sport, excursions and reasonable adjustments for Crohn’s disease and ulcerative colitis. Read More Healthcare Understand how IBD care works in Australia, including Medicare, specialists and seeing an IBD team. Medications Information about IBD medications in Australia, including PBS and access to treatments. School Resources to support children and teens with IBD in Australian schools. Support Find Australian organisations, support networks and useful contacts.

Healthcare UK Understanding the NHS and your child's IBD care Understanding the NHS, your child’s IBD care team, treatment options, hospital appointments, school support and accessing healthcare services across the UK. When your child is diagnosed with inflammatory bowel disease (IBD), understanding how the healthcare system works can help you feel more confident supporting them. In the UK, the National Health Service (NHS) provides most IBD care, from diagnosis and medication to specialist appointments and hospital treatment. As a parent or carer, you may have questions about who will look after your child, how to access support, what happens during appointments, and what to do if their symptoms get worse. Understanding the NHS and the professionals involved in your child’s care can help you navigate the system and make sure they receive the support they need. 🏥 What is the NHS? The National Health Service (NHS) provides healthcare for people living in the UK. Most NHS services are free at the point of use, although some charges may apply, depending on where you live and the service you need. The way healthcare is organised varies across the UK: England: NHS England and local integrated care systems support the delivery of healthcare services. Scotland: NHS Scotland provides healthcare through regional NHS boards. Wales: NHS Wales delivers services through local health boards. Northern Ireland: Health and Social Care (HSC) provides healthcare and social care services. Although the systems differ, children with IBD generally receive care from a combination of primary care services, hospital specialists and other healthcare professionals. Your child’s care pathway will depend on their age, diagnosis, symptoms, location and the services available in your area. 👩⚕️ Who will be involved in your child’s IBD care? Children and young people with IBD often receive care from a multidisciplinary team. This means different healthcare professionals work together to manage their condition and support their overall wellbeing. Your child’s team may include: Paediatric gastroenterologist: A doctor who specialises in digestive conditions in children, including Crohn’s disease and ulcerative colitis. IBD nurse specialist: A nurse who provides information about IBD, helps with medication questions, supports you during flare-ups and may be your main point of contact. Dietitian: A specialist who helps your child meet their nutritional needs, manage dietary challenges and maintain healthy growth. Paediatrician: A doctor who oversees your child’s general health and may help coordinate their care. Psychologist or mental health professional: Someone who can help your child manage anxiety, stress, low mood or the emotional impact of living with a chronic condition. Surgeon: A specialist who may become involved if surgery is being considered. Pharmacist: A healthcare professional who can explain medications, possible side effects and how treatments should be taken. Not every child will need support from all these professionals. Your child’s team will depend on their individual needs and treatment plan. 🩺 How your child is diagnosed and referred for care If your child develops symptoms such as persistent diarrhoea, abdominal pain, blood in their stools, unexplained weight loss or poor growth, their GP may arrange initial investigations and refer them to a paediatric gastroenterology service. Diagnosis may involve blood tests, stool tests, endoscopy, imaging or other investigations. These help the medical team determine whether your child has Crohn’s disease, ulcerative colitis or another condition. If IBD is suspected, your child may be referred to a specialist hospital team for further assessment and treatment. If your child has already been diagnosed, their specialist team will usually coordinate their ongoing IBD care. Your GP may continue to help with general health concerns, vaccinations and other medical needs. If you are worried about your child’s symptoms while waiting for an appointment, contact your GP or the relevant healthcare service for advice. Seek urgent medical help if your child becomes seriously unwell. 📅 What to expect from IBD appointments Regular appointments help your child’s team monitor their condition, assess how well treatment is working and identify potential problems before they become more serious. During appointments, the team may: Ask about abdominal pain, bowel movements, fatigue and other symptoms. Review medication, side effects and treatment adherence. Check blood and stool test results. Monitor weight, height, growth and nutritional health. Discuss school, friendships, emotional wellbeing and everyday activities. Adjust treatment or arrange further investigations if needed. The frequency of appointments will depend on how active your child’s IBD is, their treatment and whether they are experiencing complications. You can help by keeping a record of symptoms, medication changes and questions between appointments. If your child is old enough, encourage them to share their experiences and participate in conversations about their care. 💊 Understanding your child’s IBD treatment IBD treatment aims to control inflammation, manage symptoms, support healthy growth and help prevent complications. Your child’s treatment plan will depend on their diagnosis, disease severity and individual circumstances. Treatments may include: Medicines: These may include aminosalicylates, corticosteroids, immunomodulators or biologic medicines, depending on the type of IBD and the treatment required. Nutritional treatment: Some children, particularly those with Crohn’s disease, may be offered exclusive enteral nutrition, which involves receiving nutrition through prescribed liquid feeds for a period of time. Monitoring: Regular blood tests, stool tests and sometimes imaging or endoscopy help assess inflammation and treatment response. Surgery: Some children may need surgery if medicines are not effective or complications develop. Your child’s specialist team should explain the purpose of their treatment, how to take it, potential side effects and what monitoring is required. Never stop or change prescribed medication without discussing it with your child’s healthcare team. If you are concerned about side effects, contact the team for advice. 📞 Who to contact if your child’s symptoms get worse Knowing who to contact during a flare-up or when new symptoms develop can make a difficult situation less stressful. Your child’s IBD nurse or specialist team is often the best first point of contact for concerns related to their IBD. Ask for their contact details, including any advice line or out-of-hours arrangements, and find out what to do if you cannot reach them. Contact the team if your child experiences worsening abdominal pain, increased diarrhoea, blood in their stools, persistent fatigue, reduced appetite or other symptoms that concern you. Seek urgent medical assessment if your child has severe or worsening abdominal pain, significant bleeding, persistent vomiting, signs of dehydration or a high fever with worsening symptoms. Call 999 or go to A&E if your child is seriously unwell, collapses, has difficulty breathing or develops other life-threatening symptoms. If you are unsure where to seek help, NHS 111 can provide advice in England; equivalent services and arrangements differ across Scotland, Wales and Northern Ireland. Do not wait for a routine appointment if you are concerned that your child needs urgent medical attention. 🏫 Getting support for your child at school IBD can affect school attendance, concentration, energy levels and participation in everyday activities. Working with your child’s school can help ensure they receive appropriate support without feeling unnecessarily singled out. Depending on your child’s needs, support may include: Immediate access to toilets without having to ask in front of classmates. Permission to leave lessons when symptoms occur. Access to drinking water and suitable snacks or meals. Flexibility around attendance, deadlines and missed schoolwork. Rest breaks when fatigue becomes difficult to manage. Support with medication or medical appointments. A plan for managing symptoms during school trips, exams and other activities. You can ask to speak with your child’s headteacher, pastoral lead, school nurse or special educational needs coordinator (SENCO), depending on the support required. In England, some children with significant health needs may benefit from an individual healthcare plan. Additional educational support may also be available where IBD substantially affects learning or attendance. Arrangements differ across the UK. With your child’s agreement, where appropriate for their age and understanding, share relevant information with school staff so they know how to support them. 💷 Understanding prescription costs and financial support Although NHS treatment is generally free at the point of use, some families may face costs associated with prescriptions, travel to hospital appointments, parking, special dietary needs or time away from work. Prescription charges and exemptions differ across the UK. In England, NHS prescriptions are usually free for children under 16 and for young people aged 16–18 who are in full-time education. Other exemptions and support schemes may also apply. NHS prescriptions are free in Scotland, Wales and Northern Ireland. Depending on your circumstances, you may be eligible for help with healthcare travel costs, benefits or other financial support. Your eligibility will depend on where you live, your household circumstances and the relevant scheme. If hospital appointments create financial difficulties, ask your hospital team or local support service about available assistance. You can also find further information through the relevant NHS website or your local council. 🧑🤝🧑Your role as a parent or carer Supporting a child with IBD involves more than managing appointments and medication. You may also be helping them cope with uncertainty, fatigue, embarrassment, school pressures and the emotional challenges of living with a long-term condition. You can support your child by: Learning about their condition and asking questions when something is unclear. Keeping a record of symptoms, appointments and medications. Encouraging your child to share their concerns with their healthcare team. Helping them understand their treatment in an age-appropriate way. Seeking emotional support for them when needed. Looking after your own wellbeing so you can continue supporting them. As children grow older, they can gradually take more responsibility for their care. This transition should happen at a pace that suits their age, maturity and individual needs. You do not need to know all the answers. Your child’s healthcare team should help you understand their condition and make informed decisions together. 🔄 Transitioning from paediatric to adult IBD care As your child approaches adulthood, their care will eventually move from paediatric services to adult gastroenterology services. This is often called transitioning care. Transition is usually a gradual process rather than a single appointment. It helps young people develop the confidence and skills needed to manage their condition more independently. Your child may gradually learn to: Understand their diagnosis and treatment plan. Recognise symptoms that need medical attention. Order prescriptions and manage medication. Arrange appointments and communicate with healthcare professionals. Understand their healthcare rights and responsibilities. Ask your child’s IBD team when transition planning will begin and how they will coordinate the move to adult services. The timing and process vary between hospitals and across the UK. Planning ahead can help reduce anxiety and ensure your child continues to receive appropriate care without unnecessary disruption. 💙 Where to find reliable NHS and IBD support Finding trustworthy information can help you feel more confident when making decisions about your child’s care. Useful resources include: NHS website : General information about Crohn’s disease, ulcerative colitis, symptoms, investigations and treatment. Crohn’s & Colitis UK : Information about IBD, treatment, practical support, education and living with the condition. Your child’s IBD team: Personalised advice about symptoms, medication, appointments and treatment decisions. Your hospital’s patient support services: Information about financial assistance, emotional support and navigating local services. For information specific to your part of the UK, use the relevant NHS website and ask your child’s healthcare team about local services. 🌟 Helping your child get the care they need Understanding how the NHS works can make managing your child’s IBD feel less overwhelming. Knowing who is involved in their care, how to access advice and what support is available can help you feel more prepared when challenges arise. Every child’s experience of IBD is different, and their needs may change over time. Keep asking questions, stay in contact with their healthcare team and speak up if something does not feel right. You are an important part of your child’s care team. Working together with healthcare professionals can help your child manage their IBD, maintain their wellbeing and enjoy as much of everyday life as possible. This article is for general informational purposes only and is not intended to replace professional medical advice, diagnosis or treatment. Every child’s experience of IBD is different, and healthcare services, eligibility and support may vary across the UK. Always consult your child’s healthcare team for advice specific to their needs. If your child experiences severe or concerning symptoms, seek appropriate medical attention. Information about NHS services and financial support may change, so check official sources for the most up-to-date guidance. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like Your child’s IBD care team: Who does what? Meet the healthcare professionals who support your child’s IBD care, from gastroenterologists and specialist nurses to dietitians, mental health professionals and GPs. Read More Understanding IBD and the US school system Learn how the US school system supports children with Crohn’s disease and ulcerative colitis, including Section 504 Plans, classroom accommodations, bathroom access, medication, school absences and educational support. Read More Getting insurance approval for IBD treatments Learn how insurance approval works for children’s Crohn’s disease and ulcerative colitis treatments in the USA. Understand prior authorisation, medication denials, appeals and practical steps families can take to help avoid delays in their child’s care. Read More When to seek medical help for your child’s IBD Learn how to recognise worsening IBD symptoms in your child, when to contact their healthcare team, and when to seek urgent or emergency medical care in the USA. Read More Finding a Pediatric IBD Specialist A guide to finding a pediatric IBD specialist in the USA, including where to look, what to ask, understanding referrals and insurance, and finding the right medical team for your child. Read More Medication safety and monitoring Learn how to keep your child safe while taking medication for Crohn’s disease or ulcerative colitis. Discover why regular blood tests matter, how to reduce infection risks, which vaccination precautions to know, why sun protection is important, and which side effects to watch for. Read More The MLAK key: easier access to toilets across Australia Learn how the MLAK key can help children with Crohn’s disease or ulcerative colitis access compatible locked public toilets across Australia. Find out how to apply, what it costs, where to use it, and how to make outings and family trips a little less stressful. Read More Hospital admissions & emergency care Learn what to expect if your child with Crohn’s disease or ulcerative colitis needs hospital care in Australia, including emergency care, hospital admissions, treatment, what to bring, discharge planning, and support for families. Read More IBD and Australian schools Learn how Australian schools can support students with IBD, including toilet access, absences, fatigue, medication, exams, schoolwork, sport, excursions and reasonable adjustments for Crohn’s disease and ulcerative colitis. Read More Biologics and infusion treatments for children Learn about biologic medications and infusion treatments for children with Crohn’s disease and ulcerative colitis in the USA, including how they work, what to expect, side effects, costs, and insurance coverage. Read More IBD camps and youth programs Explore IBD camps, youth programs and activities in the USA for children and teenagers with Crohn’s disease or ulcerative colitis, including Camp Oasis, virtual camps, support groups and opportunities to make friends. Read More Understanding IBD treatment costs and out-of-pocket expenses Understand the costs of managing Crohn’s disease or ulcerative colitis in the USA. Learn about specialist appointments, tests, hospital visits, medications, deductibles, copays and coinsurance, plus practical ways to manage medical bills and find financial assistance. Read More Understanding IBD Medication Learn how doctors in the USA choose IBD medications for children, including the factors that influence treatment decisions, different medication options, and how your child’s individual needs guide their care. Read More Mental health and emotional support Explore mental health and emotional support options for Australian children with Crohn’s disease or ulcerative colitis and their families. Learn how to find psychologists, access Medicare rebates, connect with free counselling services, and support your child’s emotional wellbeing at home and school. Read More Medication costs and prescriptions Understand medication costs for children with Crohn’s disease or ulcerative colitis in Australia. Learn about PBS prescription prices, concession cards, the PBS Safety Net, specialist treatments and practical ways to manage ongoing medication expenses. Read More School camps, excursions and sport Learn how Australian schools can help children with Crohn’s disease or ulcerative colitis participate in camps, excursions and sport. Discover practical tips for planning medication, ensuring toilet access, managing symptoms and working with teachers to keep activities safe and inclusive. Read More Medicare & healthcare costs Understand how Medicare works for children with IBD in Australia, including specialist rebates, public and private hospital costs, subsidised medications, Medicare Safety Nets, and ways to manage out-of-pocket healthcare expenses. Read More Australian IBD medications Learn about IBD medications in Australia, including mesalazine, steroids, azathioprine, biologics, the PBS, medication costs, prescriptions, hospital medicines and what parents need to know about managing Crohn’s disease and ulcerative colitis in children. Read More School absences, missed work and catching up Learn how schools in the USA can support students with IBD who miss school due to flare-ups, medical appointments or hospital stays, including managing missed assignments, requesting extensions and accessing educational accommodations. Read More Finding emotional and mental health support Discover emotional and mental health support for children and teenagers with Crohn’s disease or ulcerative colitis in the USA, including therapy, peer support groups, school counselling and resources to help families navigate life with IBD. Read More Understanding health insurance Learn how health insurance works in the USA for children with Crohn’s disease or ulcerative colitis. Explore employer-sponsored plans, private insurance, Medicaid and CHIP, and understand coverage, medication costs, deductibles and financial assistance. Read More IBD appointments, tests and monitoring Understand what to expect from IBD appointments, medical tests, and ongoing monitoring in the USA, including how to prepare, track results, and coordinate your child’s care. Read More Financial assistance for families Explore financial assistance available to Australian families caring for a child with Crohn’s disease or ulcerative colitis. Learn about carer payments, medication subsidies, Medicare Safety Nets, travel assistance, government benefits and support services that may help reduce the financial burden. Read More The National Public Toilet Map: finding toilets across Australia Discover how the free National Public Toilet Map can help families affected by Crohn’s disease or ulcerative colitis find public toilets across Australia. Learn how to search nearby facilities, check opening hours and accessibility, plan trips, and find toilets that require an MLAK key. Read More School attendance & catching up on learning Learn how to manage school absences caused by IBD flares, medical appointments and hospital stays. Discover practical ways to catch up on schoolwork, arrange flexible deadlines, support recovery and help your child return to the classroom with confidence. Read More Finding an IBD specialist in Australia Learn how to find a paediatric gastroenterologist in Australia, get a referral, understand public and private specialist care, and access the right support for your child living with Crohn’s disease or ulcerative colitis. Read More The Australian healthcare system Understand how the Australian healthcare system works for children with IBD, including Medicare, public and private healthcare, GP referrals, paediatric gastroenterologists, hospitals, medications, healthcare costs and finding IBD services across Australia Read More 504 plans and IEPs for students with IBD Learn how Section 504 Plans and IEPs can support students with Crohn’s disease or ulcerative colitis in the USA, including school accommodations, bathroom access, attendance flexibility, missed work and how to request support. Read More IBD organisations and support networks Discover IBD organisations and support networks in the USA for children, teenagers and families living with Crohn’s disease or ulcerative colitis, including national charities, parent support groups, online communities and paediatric resources. Read More Filling prescriptions and using pharmacies Learn how to fill your child’s IBD prescriptions in the USA, understand pharmacy labels, organise refills, use specialty pharmacies, and navigate insurance requirements to help avoid interruptions to treatment. Read More Understanding your child’s IBD care team Learn about the healthcare professionals involved in your child’s IBD care in the USA, what each person does, and how they work together to support your child’s health and wellbeing. Read More Accessing biologic treatments in Australia Learn how children with Crohn’s disease or ulcerative colitis can access biologic treatments in Australia. Understand specialist assessments, PBS approval requirements, hospital infusions, at-home injections, treatment costs and ongoing monitoring. Read More Camp Fearless: youth camps for young people with IBD Discover Camp Fearless, a youth camp run by Crohn’s & Colitis Australia for teenagers living with Crohn’s disease or ulcerative colitis. Find out what to expect, how young people can connect with others who understand life with IBD, and where to find information about upcoming camps. Read More School support plans & adjustments Learn how Australian schools can support students with Crohn’s disease or ulcerative colitis through individual support plans, toilet access, flexible deadlines, adjustments during flares, and help with absences. Includes guidance for working with your child’s school and a link to our free IBD School Support Plan download. Read More Australian IBD organisations Find Australian IBD organisations, support services and reliable information for children and families living with Crohn’s disease and ulcerative colitis. Discover ways to connect with other families, find IBD services and join the IBD Kids Facebook Group. Read More

Healthcare UK Your child’s IBD care team: Who does what? Meet the healthcare professionals who support your child’s IBD care, from gastroenterologists and specialist nurses to dietitians, mental health professionals and GPs. When your child is diagnosed with inflammatory bowel disease (IBD), you will likely meet several healthcare professionals who each play an important role in their care. From diagnosing Crohn’s disease or ulcerative colitis to managing medication, nutrition and emotional wellbeing, these professionals work together to help your child stay as healthy as possible. Understanding who does what can make it easier to know where to turn when you have questions or concerns. It can also help you feel more confident when making decisions about your child’s treatment and supporting them through everyday life with IBD. Your child’s care team will depend on their individual needs, age, treatment plan and the services available in your area of the UK. 👩⚕️ Your child’s paediatric gastroenterologist A paediatric gastroenterologist is a doctor who specialises in digestive conditions in children and young people, including Crohn’s disease and ulcerative colitis. They often lead your child’s specialist IBD care and oversee their diagnosis, treatment and long-term health. Your child’s paediatric gastroenterologist may: Diagnose IBD and explain what the condition means for your child. Arrange investigations, such as blood tests, stool tests, endoscopies and scans. Develop and review your child’s treatment plan. Prescribe medication and monitor how well it is working. Assess inflammation, symptoms, growth and potential complications. Discuss treatment changes if your child experiences a flare-up or their current medication is no longer effective. Refer your child to other specialists when additional support is needed. Appointments are an opportunity to discuss how your child has been feeling, any changes in their symptoms and concerns about their treatment. It can be helpful to write down questions before appointments and bring a list of your child’s medications. If your child is old enough, encourage them to share their own experiences and ask questions, too. 🩺 The IBD nurse specialist An IBD nurse specialist is often one of the most important contacts for families managing a child’s IBD. They have specialist knowledge of inflammatory bowel disease and can provide practical advice and support between hospital appointments. Depending on your hospital, the IBD nurse may be your first point of contact when you have concerns about your child’s condition. Their role may include: Explaining IBD, treatment options and what to expect. Answering questions about medication, side effects and taking treatments correctly. Advising you about changes in symptoms and when further medical assessment is needed. Helping coordinate appointments, investigations and treatment. Providing advice about managing flare-ups and knowing when to seek urgent help. Supporting your child with practical issues, including school, activities and everyday life. Helping your child gradually develop confidence in managing their condition as they get older. Your IBD nurse may also help you understand blood and stool test results or explain what happens next after an investigation. A useful tip: Ask your child’s team for the IBD nurse’s contact details, usual working hours and any out-of-hours arrangements. Find out how to get advice if symptoms worsen and you cannot reach the nurse directly. Not every hospital has the same nursing services, so it is worth checking what support is available locally. 🥗 Dietitians and nutrition support Nutrition is an important part of caring for a child with IBD. Inflammation can affect appetite, nutrient absorption and growth, while some children may need additional nutritional support during a flare-up or as part of their treatment. A specialist dietitian can help you understand your child’s nutritional needs and develop an approach that supports their health, growth and everyday life. A dietitian may help with: Monitoring weight, height and growth. Making sure your child gets enough energy, protein, vitamins and minerals. Managing nutritional challenges when symptoms affect eating. Identifying and addressing nutritional deficiencies. Providing advice about food, hydration and maintaining a balanced diet. Explaining nutritional treatments, including exclusive enteral nutrition (EEN), when appropriate. Supporting your family if your child has a restricted diet or struggles to eat enough. Some children with Crohn’s disease may be offered EEN, which involves receiving all their nutritional requirements from prescribed liquid formula for a set period. This is a recognised treatment option for some children and should be supervised by their specialist team. There is no single diet that works for every child with IBD. Restricting foods unnecessarily can make it harder for children to meet their nutritional needs, particularly while they are growing. If you suspect certain foods make your child’s symptoms worse, speak to their dietitian or IBD team before making significant dietary changes. 🧠 Mental health and emotional support Living with IBD can affect more than your child’s physical health. They may feel anxious about symptoms, embarrassed about needing the toilet, frustrated by missing school or worried about being different from their friends. Some children also find it difficult to cope with uncertainty, hospital appointments, medication or the possibility of flare-ups. Emotional support can help your child manage these challenges and feel more confident living with a long-term condition. Depending on your child’s needs, support may come from: A psychologist: Can help your child develop coping strategies for anxiety, stress, low mood or difficult emotions associated with IBD. A counsellor or other mental health professional: May provide a safe space to talk about worries, friendships, body image and the impact of illness. The IBD nurse or paediatrician: Can discuss emotional concerns and help you access appropriate support. School pastoral staff: May help your child manage worries about attendance, symptoms, friendships and schoolwork. You do not need to wait until your child is struggling significantly before asking for help. Early support can make it easier for them to express their feelings and develop useful coping strategies. As a parent, you may also find IBD emotionally demanding. It is understandable to feel worried about your child’s health, treatment or future. Ask your child’s team about support available for parents and carers, too. 🏥 GPs, pharmacists and other healthcare professionals Although your child’s hospital team usually oversees their IBD treatment, other healthcare professionals can play an important role in supporting their overall health. Your child’s GP Your GP can help with general health concerns that are not necessarily related to IBD. They may also support vaccination planning, assess new symptoms and help coordinate care with hospital specialists. It is important to keep your GP informed about your child’s diagnosis and medication. Some medicines used to treat IBD affect the immune system, so your child’s healthcare professionals need to consider their treatment when advising about infections and vaccinations. For concerns directly related to IBD treatment, contact the specialist team where appropriate. Your pharmacist A pharmacist can help you understand how to use medicines safely and correctly. They may explain how and when to take medication, discuss possible side effects and help identify potential interactions with other medicines. If you are unsure whether a medicine is suitable for your child, particularly an over-the-counter treatment, check with their pharmacist or IBD team before giving it to them. Other healthcare professionals Depending on your child’s needs, their wider team may also include: Paediatric surgeons: Involved if surgery is being considered or required. Radiologists and endoscopy teams: Carry out or interpret investigations that help assess the condition. Hospital pharmacists: Support the safe use of specialist medicines and treatment monitoring. School nurses and educational support staff: Help your child manage IBD-related needs during the school day. Not every child will need all these professionals. The aim is to provide the right support for your child at the right time. 📞 Who to contact with different concerns When your child has IBD, it can sometimes be difficult to know which healthcare professional to contact. Knowing where to start can help you get appropriate advice more quickly. Here is a general guide to help you decide who to contact. Your concern Who to contact Worsening IBD symptoms or possible flare-up Your child’s IBD nurse or specialist team Questions about prescribed IBD medication or side effects Your IBD nurse, specialist team or pharmacist, depending on the concern Questions about food, weight or growth Your child’s dietitian or IBD team Anxiety, low mood or emotional difficulties Your IBD team, GP or an appropriate mental health professional General health concerns Your child’s GP School support or difficulties attending lessons Your child’s school and, where appropriate, their IBD team Severe or rapidly worsening symptoms Seek urgent medical assessment Your child’s hospital may provide a dedicated IBD advice line or email address. Ask the team how quickly they usually respond and what to do outside normal working hours. When to seek urgent help Contact your child’s IBD team promptly if their symptoms worsen or you are concerned about a possible flare-up. Seek urgent medical assessment if your child has severe or worsening abdominal pain, significant bleeding, persistent vomiting, signs of dehydration or a high fever alongside worsening symptoms. If your child is seriously unwell, collapses or develops potentially life-threatening symptoms, call 999 or go to A&E. NHS 111 can provide advice in England when you are unsure where to seek help; arrangements differ across Scotland, Wales and Northern Ireland. Do not wait for a routine appointment if your child needs urgent medical attention. 🤝 Making the most of your child’s care team Building a good relationship with your child’s healthcare team can make managing IBD feel more manageable. You do not need to know everything yourself, and you should feel able to ask questions whenever something is unclear. There are several simple ways to make the most of the support available. Keep a record of important information Keep a note of your child’s medications, allergies, symptoms, appointments and any changes you notice. You may also find it useful to record questions as they arise so you remember to discuss them at appointments. Ask questions when you are unsure If you do not understand a diagnosis, test result or treatment recommendation, ask the team to explain it in a different way. You can also ask about the benefits and risks of treatment options and what to expect next. Know who your main contact is Find out who to contact with routine questions, concerns about symptoms and urgent problems. Keeping these details somewhere easy to find can save time when you need advice. Involve your child in their care As your child grows older, encourage them to take part in conversations about their condition. They might start by describing their symptoms, asking a question during an appointment or learning the names of their medicines. Giving children an age-appropriate role in their care can help them feel heard and prepare them for managing their condition more independently in the future. Share information between healthcare professionals Where appropriate, make sure relevant professionals know about your child’s diagnosis and treatment. This can be particularly important when they see their GP, attend another hospital or need treatment for an unrelated illness. Speak up if something is not working If you are struggling to access support, have concerns about your child’s treatment or feel that an important issue has not been addressed, raise it with their IBD team. You can ask for clarification, discuss your concerns or find out whether additional support is available. Your child’s needs may change over time, and their care team should help you navigate those changes. 💙 Remember, you are part of the team Your child’s IBD care team brings together different areas of expertise to support their physical health, emotional wellbeing and quality of life. Knowing who does what can help you find the right support, ask informed questions and feel more confident when managing your child’s condition. You know your child better than anyone else. Your observations, questions and concerns are an important part of their care, and you should feel comfortable sharing them with their healthcare professionals. With the right support and a good relationship with their care team, your child can learn to understand their IBD, manage the challenges it brings and take an increasingly active role in their health as they grow. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like Understanding the NHS and your child's IBD care Understanding the NHS, your child’s IBD care team, treatment options, hospital appointments, school support and accessing healthcare services across the UK. Read More Understanding IBD and the US school system Learn how the US school system supports children with Crohn’s disease and ulcerative colitis, including Section 504 Plans, classroom accommodations, bathroom access, medication, school absences and educational support. Read More Getting insurance approval for IBD treatments Learn how insurance approval works for children’s Crohn’s disease and ulcerative colitis treatments in the USA. Understand prior authorisation, medication denials, appeals and practical steps families can take to help avoid delays in their child’s care. Read More When to seek medical help for your child’s IBD Learn how to recognise worsening IBD symptoms in your child, when to contact their healthcare team, and when to seek urgent or emergency medical care in the USA. Read More Finding a Pediatric IBD Specialist A guide to finding a pediatric IBD specialist in the USA, including where to look, what to ask, understanding referrals and insurance, and finding the right medical team for your child. Read More Medication safety and monitoring Learn how to keep your child safe while taking medication for Crohn’s disease or ulcerative colitis. Discover why regular blood tests matter, how to reduce infection risks, which vaccination precautions to know, why sun protection is important, and which side effects to watch for. Read More The MLAK key: easier access to toilets across Australia Learn how the MLAK key can help children with Crohn’s disease or ulcerative colitis access compatible locked public toilets across Australia. Find out how to apply, what it costs, where to use it, and how to make outings and family trips a little less stressful. Read More Hospital admissions & emergency care Learn what to expect if your child with Crohn’s disease or ulcerative colitis needs hospital care in Australia, including emergency care, hospital admissions, treatment, what to bring, discharge planning, and support for families. Read More IBD and Australian schools Learn how Australian schools can support students with IBD, including toilet access, absences, fatigue, medication, exams, schoolwork, sport, excursions and reasonable adjustments for Crohn’s disease and ulcerative colitis. Read More Biologics and infusion treatments for children Learn about biologic medications and infusion treatments for children with Crohn’s disease and ulcerative colitis in the USA, including how they work, what to expect, side effects, costs, and insurance coverage. Read More IBD camps and youth programs Explore IBD camps, youth programs and activities in the USA for children and teenagers with Crohn’s disease or ulcerative colitis, including Camp Oasis, virtual camps, support groups and opportunities to make friends. Read More Understanding IBD treatment costs and out-of-pocket expenses Understand the costs of managing Crohn’s disease or ulcerative colitis in the USA. Learn about specialist appointments, tests, hospital visits, medications, deductibles, copays and coinsurance, plus practical ways to manage medical bills and find financial assistance. Read More Understanding IBD Medication Learn how doctors in the USA choose IBD medications for children, including the factors that influence treatment decisions, different medication options, and how your child’s individual needs guide their care. Read More Mental health and emotional support Explore mental health and emotional support options for Australian children with Crohn’s disease or ulcerative colitis and their families. Learn how to find psychologists, access Medicare rebates, connect with free counselling services, and support your child’s emotional wellbeing at home and school. Read More Medication costs and prescriptions Understand medication costs for children with Crohn’s disease or ulcerative colitis in Australia. Learn about PBS prescription prices, concession cards, the PBS Safety Net, specialist treatments and practical ways to manage ongoing medication expenses. Read More School camps, excursions and sport Learn how Australian schools can help children with Crohn’s disease or ulcerative colitis participate in camps, excursions and sport. Discover practical tips for planning medication, ensuring toilet access, managing symptoms and working with teachers to keep activities safe and inclusive. Read More Medicare & healthcare costs Understand how Medicare works for children with IBD in Australia, including specialist rebates, public and private hospital costs, subsidised medications, Medicare Safety Nets, and ways to manage out-of-pocket healthcare expenses. Read More Australian IBD medications Learn about IBD medications in Australia, including mesalazine, steroids, azathioprine, biologics, the PBS, medication costs, prescriptions, hospital medicines and what parents need to know about managing Crohn’s disease and ulcerative colitis in children. Read More School absences, missed work and catching up Learn how schools in the USA can support students with IBD who miss school due to flare-ups, medical appointments or hospital stays, including managing missed assignments, requesting extensions and accessing educational accommodations. Read More Finding emotional and mental health support Discover emotional and mental health support for children and teenagers with Crohn’s disease or ulcerative colitis in the USA, including therapy, peer support groups, school counselling and resources to help families navigate life with IBD. Read More Understanding health insurance Learn how health insurance works in the USA for children with Crohn’s disease or ulcerative colitis. Explore employer-sponsored plans, private insurance, Medicaid and CHIP, and understand coverage, medication costs, deductibles and financial assistance. Read More IBD appointments, tests and monitoring Understand what to expect from IBD appointments, medical tests, and ongoing monitoring in the USA, including how to prepare, track results, and coordinate your child’s care. Read More Financial assistance for families Explore financial assistance available to Australian families caring for a child with Crohn’s disease or ulcerative colitis. Learn about carer payments, medication subsidies, Medicare Safety Nets, travel assistance, government benefits and support services that may help reduce the financial burden. Read More The National Public Toilet Map: finding toilets across Australia Discover how the free National Public Toilet Map can help families affected by Crohn’s disease or ulcerative colitis find public toilets across Australia. Learn how to search nearby facilities, check opening hours and accessibility, plan trips, and find toilets that require an MLAK key. Read More School attendance & catching up on learning Learn how to manage school absences caused by IBD flares, medical appointments and hospital stays. Discover practical ways to catch up on schoolwork, arrange flexible deadlines, support recovery and help your child return to the classroom with confidence. Read More Finding an IBD specialist in Australia Learn how to find a paediatric gastroenterologist in Australia, get a referral, understand public and private specialist care, and access the right support for your child living with Crohn’s disease or ulcerative colitis. Read More The Australian healthcare system Understand how the Australian healthcare system works for children with IBD, including Medicare, public and private healthcare, GP referrals, paediatric gastroenterologists, hospitals, medications, healthcare costs and finding IBD services across Australia Read More 504 plans and IEPs for students with IBD Learn how Section 504 Plans and IEPs can support students with Crohn’s disease or ulcerative colitis in the USA, including school accommodations, bathroom access, attendance flexibility, missed work and how to request support. Read More IBD organisations and support networks Discover IBD organisations and support networks in the USA for children, teenagers and families living with Crohn’s disease or ulcerative colitis, including national charities, parent support groups, online communities and paediatric resources. Read More Filling prescriptions and using pharmacies Learn how to fill your child’s IBD prescriptions in the USA, understand pharmacy labels, organise refills, use specialty pharmacies, and navigate insurance requirements to help avoid interruptions to treatment. Read More Understanding your child’s IBD care team Learn about the healthcare professionals involved in your child’s IBD care in the USA, what each person does, and how they work together to support your child’s health and wellbeing. Read More Accessing biologic treatments in Australia Learn how children with Crohn’s disease or ulcerative colitis can access biologic treatments in Australia. Understand specialist assessments, PBS approval requirements, hospital infusions, at-home injections, treatment costs and ongoing monitoring. Read More Camp Fearless: youth camps for young people with IBD Discover Camp Fearless, a youth camp run by Crohn’s & Colitis Australia for teenagers living with Crohn’s disease or ulcerative colitis. Find out what to expect, how young people can connect with others who understand life with IBD, and where to find information about upcoming camps. Read More School support plans & adjustments Learn how Australian schools can support students with Crohn’s disease or ulcerative colitis through individual support plans, toilet access, flexible deadlines, adjustments during flares, and help with absences. Includes guidance for working with your child’s school and a link to our free IBD School Support Plan download. Read More Australian IBD organisations Find Australian IBD organisations, support services and reliable information for children and families living with Crohn’s disease and ulcerative colitis. Discover ways to connect with other families, find IBD services and join the IBD Kids Facebook Group. Read More

Medications USA Biologics and infusion treatments for children Learn about biologic medications and infusion treatments for children with Crohn’s disease and ulcerative colitis in the USA, including how they work, what to expect, side effects, costs, and insurance coverage. Biologic medications are an important treatment option for children living with Crohn’s disease and ulcerative colitis (IBD). If your child’s current medication is not controlling their symptoms, or their disease is more severe, their paediatric gastroenterologist may recommend a biologic treatment. Starting a new medication can feel overwhelming for families. Understanding how biologics work, how treatments are given, and what to expect can help you and your child feel more prepared. 💊 What Are Biologics? Biologics are medicines made from living organisms that target specific parts of the immune system involved in inflammation. Unlike some traditional IBD medications, which affect the immune system more broadly, biologics target particular proteins or pathways that contribute to inflammation in the digestive tract. They can help reduce inflammation, improve symptoms, support healing of the bowel lining, and maintain remission. Biologics may be recommended when: Other medications have not controlled your child’s IBD. Your child has moderate to severe Crohn’s disease or ulcerative colitis. Your child has complications or a higher risk of disease progression. Their gastroenterologist believes early biologic treatment may offer better disease control. Biologics do not cure IBD, but they can help many children achieve and maintain remission. 🧬 Which biologics are used for children in the USA? Several biologic medications are used to treat paediatric IBD in the United States. The most appropriate option depends on your child’s diagnosis, age, disease severity, medical history, and previous treatments. Common biologic options include: Infliximab (Remicade and biosimilars): An anti-TNF medication commonly used for paediatric Crohn’s disease and ulcerative colitis. It is given through an intravenous (IV) infusion. Adalimumab (Humira and biosimilars): Another anti-TNF medication that is given as an injection under the skin. Some families learn to administer it at home. Ustekinumab (Stelara and biosimilars, where applicable): Targets interleukin-12 and interleukin-23, proteins involved in inflammation. Treatment generally begins with an IV infusion, followed by injections under the skin. Vedolizumab (Entyvio): Targets immune-cell movement into the gut and is used for Crohn’s disease and ulcerative colitis. It can be given by IV infusion, with subcutaneous options available for eligible patients. Other targeted treatments may be considered depending on your child’s age, diagnosis, and treatment history. Not every medication is approved for every age group or indication, and approval and insurance coverage can vary. Your child’s gastroenterologist can explain which options are appropriate. 💉 What is an infusion treatment? An infusion delivers medication directly into a vein through an IV line. In paediatric IBD, infliximab is a commonly used infusion treatment. Infusions are usually given at a hospital, specialist infusion centre, or another approved healthcare facility. Your child will be monitored during treatment for possible reactions. A typical appointment may include: Checking your child’s weight, temperature, and other vital signs. Placing an IV line in a vein, usually in the arm or hand. Administering the medication over a period of time. Monitoring your child during and sometimes after the infusion. The first appointment may take several hours, depending on the medication, preparation, and monitoring requirements. Subsequent appointments may be shorter. 🗓️ How often will my child need infusions? The schedule depends on the medication and your child’s individual treatment plan. For infliximab, treatment commonly begins with three induction infusions at weeks 0, 2, and 6, followed by maintenance infusions approximately every 8 weeks. Some children need more frequent infusions or dose adjustments to control their disease. The gastroenterology team may use blood tests, stool tests such as faecal calprotectin, symptom reviews, and drug-level testing to assess how well treatment is working. Your child’s schedule may change over time based on their response to treatment. 🏥 Where can children receive infusions in the USA? Children may receive biologic infusions at: Children’s hospitals with paediatric gastroenterology services. Hospital-based infusion centres. Specialist outpatient infusion centres that treat children. Other facilities approved by the prescribing team and insurance provider. Your child’s gastroenterologist can help arrange an appropriate location. Some families travel to a specialist children’s hospital, while others can receive ongoing treatment closer to home. When choosing an infusion centre, ask whether staff have experience treating children with IBD and whether they can manage infusion reactions if they occur. 🧸 What happens during an infusion appointment? Infusions can feel intimidating, particularly for younger children or children who are anxious about needles. You can help your child prepare by explaining what will happen in simple, reassuring language. Let them know they can bring comfort items, headphones, books, games, or a favourite blanket if the centre allows them. Helpful strategies include: Bringing snacks and drinks, if permitted. Planning a quiet activity for the appointment. Asking about numbing cream or other ways to make IV placement more comfortable. Checking whether a parent or caregiver can remain with the child throughout treatment. Asking the infusion team about child-life specialists or other support for children who are nervous. It may help to describe the appointment as a way of giving their body medicine to help calm the inflammation, rather than focusing on the needle. ⚠️ What are the possible side effects? Biologics can be very effective, but they can also have side effects. The risks depend on the medication and your child’s health. Possible side effects include: Headaches, nausea, or fatigue. Infusion reactions, such as itching, flushing, rash, dizziness, or breathing difficulties. An increased risk of certain infections because the medication affects immune function. Injection-site reactions with medicines given under the skin. Rarely, more serious reactions or complications can occur. Before starting treatment, the medical team usually screens for infections such as tuberculosis and hepatitis B, reviews vaccination history, and arranges appropriate blood tests. Contact your child’s healthcare team if they develop a fever or signs of infection. Seek urgent medical care for severe breathing difficulties, facial or throat swelling, or other signs of a serious allergic reaction. 🛡️ Can my child attend school and play sport? Many children receiving biologics can continue attending school, playing sport, seeing friends, and participating in everyday activities. Treatment is intended to control inflammation and help children feel well enough to enjoy normal childhood experiences. However, biologics can increase the risk of some infections. Your child’s healthcare team can advise on precautions based on their medication and health. It is also important to: Ask before giving any live vaccine, as some may be unsuitable during biologic treatment. Encourage good handwashing and sensible infection precautions. Let the medical team know if your child has a significant infection or is due for surgery. If your child feels tired after an infusion, they may need some downtime. Otherwise, activities can usually continue as tolerated. 💰 How much do biologics cost in the USA? The cost of biologic treatment in the United States varies considerably depending on the medication, insurance plan, treatment setting, and whether a brand-name medicine or biosimilar is used. Health insurance may cover biologics when they are medically necessary, but families can still face deductibles, copayments, coinsurance, and other out-of-pocket expenses. Before treatment begins, contact your insurance provider and ask: Is the medication covered under my child’s plan? Does it require prior authorisation? Must treatment be given at a particular infusion centre? What will we pay for each infusion or injection? Is there a preferred biosimilar? Are there financial assistance or copay support programmes available? The hospital’s financial counsellor, insurance coordinator, or the medication manufacturer’s patient support programme may be able to help you understand your options. ❤️ What if the first biologic does not work? Not every child responds to their first biologic, and some children initially improve but later experience a loss of response. If this happens, the gastroenterologist may assess whether: The dose or frequency needs adjusting. The body has developed antibodies against the medication. The medication is reaching an effective level in the bloodstream. A different biologic or treatment approach would be more appropriate. Changing treatment does not mean your child has run out of options. There are several therapies available, and the goal is to find the approach that controls inflammation while supporting your child’s growth, development, and quality of life. 📝 Questions to ask your child’s gastroenterologist Before starting a biologic, consider asking: Why are you recommending this medication for my child? What benefits should we expect, and how will we measure success? How is it given, and how often will treatment be needed? What side effects should we look out for? Which vaccinations or infection precautions are important? What happens if my child develops a fever or becomes unwell before an infusion? How will treatment affect school, sport, travel, and daily activities? What will our insurance cover, and what costs should we expect? What is the plan if the medication does not work? You do not need to remember every question at once. Taking a written list to appointments can help you feel more confident and ensure your concerns are addressed. 🌟 Helping your child feel supported Starting a biologic can be a big step for a child and their family. It is normal to have questions about safety, needles, side effects, and what treatment means for the future. Give your child opportunities to ask questions and express their feelings. Older children and teenagers may also want to understand their medication and take a more active role in their care. With the right medical support, biologic treatment can help many children with IBD manage inflammation and get back to the activities and experiences that matter to them. Remember: Every child’s IBD is different. Treatment decisions should always be made with your child’s paediatric gastroenterologist, who can explain the benefits, risks, and available options for your child. 🔗 Helpful resources in the USA Crohn’s & Colitis Foundation — Information about IBD, treatments, support programmes, and living with Crohn’s disease or ulcerative colitis. US Food and Drug Administration (FDA) — Official information about medication approvals, safety updates, and prescribing information. National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) — Information about Crohn’s disease, ulcerative colitis, and digestive health. This article is for general informational and educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always consult your child’s paediatric gastroenterologist before making decisions about medications or treatment. Treatment options, approvals, and insurance coverage may vary in the USA. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like Understanding the NHS and your child's IBD care Understanding the NHS, your child’s IBD care team, treatment options, hospital appointments, school support and accessing healthcare services across the UK. Read More IBD camps and youth programs Explore IBD camps, youth programs and activities in the USA for children and teenagers with Crohn’s disease or ulcerative colitis, including Camp Oasis, virtual camps, support groups and opportunities to make friends. Read More Understanding IBD treatment costs and out-of-pocket expenses Understand the costs of managing Crohn’s disease or ulcerative colitis in the USA. Learn about specialist appointments, tests, hospital visits, medications, deductibles, copays and coinsurance, plus practical ways to manage medical bills and find financial assistance. 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Read More School camps, excursions and sport Learn how Australian schools can help children with Crohn’s disease or ulcerative colitis participate in camps, excursions and sport. Discover practical tips for planning medication, ensuring toilet access, managing symptoms and working with teachers to keep activities safe and inclusive. Read More Medicare & healthcare costs Understand how Medicare works for children with IBD in Australia, including specialist rebates, public and private hospital costs, subsidised medications, Medicare Safety Nets, and ways to manage out-of-pocket healthcare expenses. Read More Australian IBD medications Learn about IBD medications in Australia, including mesalazine, steroids, azathioprine, biologics, the PBS, medication costs, prescriptions, hospital medicines and what parents need to know about managing Crohn’s disease and ulcerative colitis in children. Read More School absences, missed work and catching up Learn how schools in the USA can support students with IBD who miss school due to flare-ups, medical appointments or hospital stays, including managing missed assignments, requesting extensions and accessing educational accommodations. Read More Finding emotional and mental health support Discover emotional and mental health support for children and teenagers with Crohn’s disease or ulcerative colitis in the USA, including therapy, peer support groups, school counselling and resources to help families navigate life with IBD. Read More Understanding health insurance Learn how health insurance works in the USA for children with Crohn’s disease or ulcerative colitis. Explore employer-sponsored plans, private insurance, Medicaid and CHIP, and understand coverage, medication costs, deductibles and financial assistance. Read More IBD appointments, tests and monitoring Understand what to expect from IBD appointments, medical tests, and ongoing monitoring in the USA, including how to prepare, track results, and coordinate your child’s care. Read More Financial assistance for families Explore financial assistance available to Australian families caring for a child with Crohn’s disease or ulcerative colitis. Learn about carer payments, medication subsidies, Medicare Safety Nets, travel assistance, government benefits and support services that may help reduce the financial burden. Read More The National Public Toilet Map: finding toilets across Australia Discover how the free National Public Toilet Map can help families affected by Crohn’s disease or ulcerative colitis find public toilets across Australia. Learn how to search nearby facilities, check opening hours and accessibility, plan trips, and find toilets that require an MLAK key. 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Read More Filling prescriptions and using pharmacies Learn how to fill your child’s IBD prescriptions in the USA, understand pharmacy labels, organise refills, use specialty pharmacies, and navigate insurance requirements to help avoid interruptions to treatment. Read More Understanding your child’s IBD care team Learn about the healthcare professionals involved in your child’s IBD care in the USA, what each person does, and how they work together to support your child’s health and wellbeing. Read More Accessing biologic treatments in Australia Learn how children with Crohn’s disease or ulcerative colitis can access biologic treatments in Australia. Understand specialist assessments, PBS approval requirements, hospital infusions, at-home injections, treatment costs and ongoing monitoring. Read More Camp Fearless: youth camps for young people with IBD Discover Camp Fearless, a youth camp run by Crohn’s & Colitis Australia for teenagers living with Crohn’s disease or ulcerative colitis. Find out what to expect, how young people can connect with others who understand life with IBD, and where to find information about upcoming camps. Read More School support plans & adjustments Learn how Australian schools can support students with Crohn’s disease or ulcerative colitis through individual support plans, toilet access, flexible deadlines, adjustments during flares, and help with absences. Includes guidance for working with your child’s school and a link to our free IBD School Support Plan download. Read More Australian IBD organisations Find Australian IBD organisations, support services and reliable information for children and families living with Crohn’s disease and ulcerative colitis. Discover ways to connect with other families, find IBD services and join the IBD Kids Facebook Group. 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School USA School absences, missed work and catching up Learn how schools in the USA can support students with IBD who miss school due to flare-ups, medical appointments or hospital stays, including managing missed assignments, requesting extensions and accessing educational accommodations. Living with inflammatory bowel disease (IBD) can sometimes make getting to school difficult. Children and teens with Crohn’s disease or ulcerative colitis may miss school because of flare-ups, medical appointments, hospital stays, fatigue or symptoms that make it hard to get through the day. Missing school can be stressful for both students and parents. Your child might worry about falling behind, unfinished assignments, upcoming tests or explaining their absences to teachers. The good news is that there are ways to help your child keep up with learning while managing their IBD. In the United States, schools can provide different types of support and adjustments to help students manage their health and education. 🏫 Understanding your child’s rights at school In the USA, students with IBD may be eligible for educational accommodations that help them access their education when their condition affects school attendance or learning. Two important options to know about are: Section 504 Plan: Under Section 504 of the Rehabilitation Act, eligible students with disabilities can receive accommodations to help them access school and participate in learning. For a student with IBD, this might include extra time for assignments, flexibility with attendance, bathroom access or alternative arrangements for tests. Individualized Education Program (IEP): Under the Individuals with Disabilities Education Act (IDEA), eligible students can receive special education and related services. An IEP may be appropriate when a student's needs meet the law's specific eligibility requirements, including a need for special education. Not every student with IBD will need a 504 Plan or IEP. Some students may receive helpful adjustments through informal arrangements with their teachers or school. If your child is frequently missing school or struggling to complete work because of their symptoms, speak with the school counsellor, nurse or designated 504 coordinator about what support may be available. 📅 Why students with IBD may miss school Absences can happen for many reasons, and they are not always predictable. Your child may need time away from school because of: Flare-ups causing diarrhoea, abdominal pain or urgent bathroom trips. Extreme fatigue that makes concentrating or participating in class difficult. Medical appointments, blood tests, scans or procedures. Hospital admissions or recovery after surgery. Medication side effects or changes to treatment. Anxiety, stress or emotional difficulties related to living with IBD. Some children may manage well for weeks or months before suddenly needing several days off. Others may attend school but struggle to concentrate because they are tired, uncomfortable or worried about their symptoms. Missing school because of IBD is not the same as skipping school. Your child may want to attend but be physically unable to manage the school day. 📚 Helping your child catch up on missed work When your child returns to school after an absence, the amount of missed work can feel overwhelming. Trying to complete everything immediately may add unnecessary stress, particularly when they are still recovering. Instead, work with your child and their teachers to create a manageable plan. Start with the most important work. Ask teachers to identify which assignments, lessons and assessments are essential. Not every missed worksheet or classroom activity needs to be completed. Break work into smaller tasks. Rather than asking your child to catch up on everything in one evening, divide assignments into shorter, achievable tasks with breaks in between. Agree on realistic deadlines. Your child may need extra time to complete assignments after a flare-up or hospital stay. Ask teachers whether deadlines can be extended or assignments adjusted. Request missed learning materials. Teachers may be able to share class notes, worksheets, presentation slides, online assignments or recordings where available. This can help your child understand the material without needing to recreate every missed lesson. Prioritise rest and recovery. Your child does not need to sacrifice sleep or recovery time to catch up. If the workload is too much, contact the school and discuss further adjustments. 🤝 Working with your child’s teachers Good communication between home and school can make a significant difference when your child is absent. You do not need to explain every medical detail. Instead, provide enough information for teachers to understand that the absence is health-related and that your child may need flexibility. It can help to agree on: How the school will notify you about missed assignments. Who your child or family should contact when work needs to be collected. Which assignments should be prioritised. How deadlines and tests will be managed after an absence. What happens if your child returns but is not yet feeling well enough to manage a full workload. If several teachers are involved, ask whether one staff member, such as a school counsellor or case manager, can coordinate communication. This prevents your child from having to explain their situation repeatedly. 📝 Using a 504 Plan to support attendance and schoolwork For students who qualify, a Section 504 Plan can document accommodations that help them manage IBD at school. Depending on your child's needs, accommodations may include: Excused absences related to their medical condition, consistent with applicable school policies and legal requirements. Flexible deadlines following illness, appointments or hospital stays. Extra time to complete assignments and tests. Opportunities to make up missed tests without penalty where appropriate. Access to class materials and assignments during extended absences. Permission to leave class for urgent bathroom needs. A plan for communicating with teachers when a flare-up affects schoolwork. A gradual return to a full workload after a significant illness. Accommodations should be tailored to your child's individual circumstances. A 504 Plan does not automatically excuse every absence or remove every academic requirement, but it can help establish a clear and consistent approach to supporting your child's needs. If your child already has a 504 Plan, ask the school to review it if their symptoms change or their absences become more frequent. 💻 What if your child misses school for an extended period? Sometimes a flare-up, surgery or hospital admission means a student cannot attend school for an extended period. If this happens, contact the school as early as possible to discuss how your child can continue learning without being expected to complete a normal school workload while unwell. Depending on eligibility, state rules and school district policies, possible options may include: Homebound instruction: Some school districts offer instruction at home for eligible students who cannot attend school because of a medical condition. Hospital instruction: Educational support may be available for students receiving treatment in hospital. Online learning: Teachers may provide online assignments or access to classroom learning platforms. Temporary adjustments: The school may reduce the workload, extend deadlines or modify the schedule while your child recovers. Under IDEA, eligible students who need special education and related services may receive services in settings outside the regular classroom when appropriate. Section 504 may also require schools to provide services or adjustments to eligible students. The options available will depend on your child's circumstances and local requirements. Ask the school district what documentation is needed and how to arrange appropriate support. 🔄 Returning to school after a flare-up or hospital stay Returning to school can be difficult even when your child is feeling better. They may still be tired, anxious about symptoms returning or worried about the amount of work they have missed. A gradual return may help, if appropriate for your child's health and school arrangements. Consider discussing: Starting with a shorter school day if needed and feasible. Reducing assignments temporarily. Rescheduling tests and major assessments. Allowing extra bathroom breaks and access to the school nurse. Providing a quiet place to rest if fatigue becomes overwhelming. Checking in regularly with a trusted teacher or counsellor. Your child may look well before they have fully recovered. Give them time to rebuild their stamina, and ask their healthcare team for guidance if you are unsure what level of activity is appropriate. 💛 Supporting your child’s emotional wellbeing Falling behind can affect a child's confidence and emotional wellbeing. They may feel embarrassed about their absences, worry that teachers think they are not trying or feel left out when classmates continue with their usual routines. Teenagers may be particularly concerned about missing social activities, falling behind on credits or keeping up with important exams. You can help by reminding your child that their health matters and that they are not expected to control when their IBD symptoms occur. Encourage them to tell you when schoolwork feels unmanageable. If anxiety about attendance, falling behind or returning to school becomes overwhelming, a school counsellor or mental health professional may be able to help. It is also important to recognise their efforts. Completing one assignment, attending part of the school day or asking a teacher for help can be meaningful progress during recovery. 🗣️ What to say to the school If you are unsure how to start the conversation, you could send a short email explaining that your child has IBD and needs support managing absences and missed work. You do not need to share every detail of their diagnosis or symptoms. Focus on the impact on their education and the support you would like to discuss. You could ask for a meeting with your child's teachers, school counsellor or 504 coordinator to develop a plan for future absences and catching up. Having an agreed plan in place before the next flare-up can reduce stress for everyone. ⭐ Remember: your child’s health comes first Children and teens with IBD may experience unpredictable absences, and catching up can take time. They should not have to choose between looking after their health and keeping up with school. With clear communication, realistic expectations and appropriate educational accommodations, schools can help students continue learning while managing their condition. If your child is struggling, reach out early. You do not have to wait until they have fallen significantly behind to ask for support. This article is for general informational purposes only and is not a substitute for professional medical, educational or legal advice. School policies, eligibility requirements and available accommodations vary. Contact your child's school or school district for guidance specific to your circumstances. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like 504 plans and IEPs for students with IBD Learn how Section 504 Plans and IEPs can support students with Crohn’s disease or ulcerative colitis in the USA, including school accommodations, bathroom access, attendance flexibility, missed work and how to request support. Read More IBD organisations and support networks Discover IBD organisations and support networks in the USA for children, teenagers and families living with Crohn’s disease or ulcerative colitis, including national charities, parent support groups, online communities and paediatric resources. Read More Filling prescriptions and using pharmacies Learn how to fill your child’s IBD prescriptions in the USA, understand pharmacy labels, organise refills, use specialty pharmacies, and navigate insurance requirements to help avoid interruptions to treatment. Read More Understanding your child’s IBD care team Learn about the healthcare professionals involved in your child’s IBD care in the USA, what each person does, and how they work together to support your child’s health and wellbeing. Read More Accessing biologic treatments in Australia Learn how children with Crohn’s disease or ulcerative colitis can access biologic treatments in Australia. Understand specialist assessments, PBS approval requirements, hospital infusions, at-home injections, treatment costs and ongoing monitoring. Read More Camp Fearless: youth camps for young people with IBD Discover Camp Fearless, a youth camp run by Crohn’s & Colitis Australia for teenagers living with Crohn’s disease or ulcerative colitis. Find out what to expect, how young people can connect with others who understand life with IBD, and where to find information about upcoming camps. Read More School support plans & adjustments Learn how Australian schools can support students with Crohn’s disease or ulcerative colitis through individual support plans, toilet access, flexible deadlines, adjustments during flares, and help with absences. Includes guidance for working with your child’s school and a link to our free IBD School Support Plan download. Read More Australian IBD organisations Find Australian IBD organisations, support services and reliable information for children and families living with Crohn’s disease and ulcerative colitis. Discover ways to connect with other families, find IBD services and join the IBD Kids Facebook Group. Read More Understanding IBD and the US school system Learn how the US school system supports children with Crohn’s disease and ulcerative colitis, including Section 504 Plans, classroom accommodations, bathroom access, medication, school absences and educational support. Read More Getting insurance approval for IBD treatments Learn how insurance approval works for children’s Crohn’s disease and ulcerative colitis treatments in the USA. Understand prior authorisation, medication denials, appeals and practical steps families can take to help avoid delays in their child’s care. Read More When to seek medical help for your child’s IBD Learn how to recognise worsening IBD symptoms in your child, when to contact their healthcare team, and when to seek urgent or emergency medical care in the USA. Read More Finding a Pediatric IBD Specialist A guide to finding a pediatric IBD specialist in the USA, including where to look, what to ask, understanding referrals and insurance, and finding the right medical team for your child. Read More Medication safety and monitoring Learn how to keep your child safe while taking medication for Crohn’s disease or ulcerative colitis. Discover why regular blood tests matter, how to reduce infection risks, which vaccination precautions to know, why sun protection is important, and which side effects to watch for. Read More The MLAK key: easier access to toilets across Australia Learn how the MLAK key can help children with Crohn’s disease or ulcerative colitis access compatible locked public toilets across Australia. Find out how to apply, what it costs, where to use it, and how to make outings and family trips a little less stressful. Read More Hospital admissions & emergency care Learn what to expect if your child with Crohn’s disease or ulcerative colitis needs hospital care in Australia, including emergency care, hospital admissions, treatment, what to bring, discharge planning, and support for families. Read More IBD and Australian schools Learn how Australian schools can support students with IBD, including toilet access, absences, fatigue, medication, exams, schoolwork, sport, excursions and reasonable adjustments for Crohn’s disease and ulcerative colitis. Read More IBD camps and youth programs Explore IBD camps, youth programs and activities in the USA for children and teenagers with Crohn’s disease or ulcerative colitis, including Camp Oasis, virtual camps, support groups and opportunities to make friends. Read More Understanding IBD treatment costs and out-of-pocket expenses Understand the costs of managing Crohn’s disease or ulcerative colitis in the USA. Learn about specialist appointments, tests, hospital visits, medications, deductibles, copays and coinsurance, plus practical ways to manage medical bills and find financial assistance. Read More Understanding IBD Medication Learn how doctors in the USA choose IBD medications for children, including the factors that influence treatment decisions, different medication options, and how your child’s individual needs guide their care. Read More Mental health and emotional support Explore mental health and emotional support options for Australian children with Crohn’s disease or ulcerative colitis and their families. Learn how to find psychologists, access Medicare rebates, connect with free counselling services, and support your child’s emotional wellbeing at home and school. Read More Medication costs and prescriptions Understand medication costs for children with Crohn’s disease or ulcerative colitis in Australia. Learn about PBS prescription prices, concession cards, the PBS Safety Net, specialist treatments and practical ways to manage ongoing medication expenses. Read More School camps, excursions and sport Learn how Australian schools can help children with Crohn’s disease or ulcerative colitis participate in camps, excursions and sport. Discover practical tips for planning medication, ensuring toilet access, managing symptoms and working with teachers to keep activities safe and inclusive. Read More Medicare & healthcare costs Understand how Medicare works for children with IBD in Australia, including specialist rebates, public and private hospital costs, subsidised medications, Medicare Safety Nets, and ways to manage out-of-pocket healthcare expenses. Read More Australian IBD medications Learn about IBD medications in Australia, including mesalazine, steroids, azathioprine, biologics, the PBS, medication costs, prescriptions, hospital medicines and what parents need to know about managing Crohn’s disease and ulcerative colitis in children. Read More Finding emotional and mental health support Discover emotional and mental health support for children and teenagers with Crohn’s disease or ulcerative colitis in the USA, including therapy, peer support groups, school counselling and resources to help families navigate life with IBD. Read More Understanding health insurance Learn how health insurance works in the USA for children with Crohn’s disease or ulcerative colitis. Explore employer-sponsored plans, private insurance, Medicaid and CHIP, and understand coverage, medication costs, deductibles and financial assistance. Read More IBD appointments, tests and monitoring Understand what to expect from IBD appointments, medical tests, and ongoing monitoring in the USA, including how to prepare, track results, and coordinate your child’s care. Read More Financial assistance for families Explore financial assistance available to Australian families caring for a child with Crohn’s disease or ulcerative colitis. Learn about carer payments, medication subsidies, Medicare Safety Nets, travel assistance, government benefits and support services that may help reduce the financial burden. Read More The National Public Toilet Map: finding toilets across Australia Discover how the free National Public Toilet Map can help families affected by Crohn’s disease or ulcerative colitis find public toilets across Australia. Learn how to search nearby facilities, check opening hours and accessibility, plan trips, and find toilets that require an MLAK key. Read More School attendance & catching up on learning Learn how to manage school absences caused by IBD flares, medical appointments and hospital stays. Discover practical ways to catch up on schoolwork, arrange flexible deadlines, support recovery and help your child return to the classroom with confidence. Read More Finding an IBD specialist in Australia Learn how to find a paediatric gastroenterologist in Australia, get a referral, understand public and private specialist care, and access the right support for your child living with Crohn’s disease or ulcerative colitis. Read More The Australian healthcare system Understand how the Australian healthcare system works for children with IBD, including Medicare, public and private healthcare, GP referrals, paediatric gastroenterologists, hospitals, medications, healthcare costs and finding IBD services across Australia Read More

Support USA IBD camps and youth programs Explore IBD camps, youth programs and activities in the USA for children and teenagers with Crohn’s disease or ulcerative colitis, including Camp Oasis, virtual camps, support groups and opportunities to make friends. Living with Crohn’s disease or ulcerative colitis can sometimes make children and teenagers feel different from their friends. Between medical appointments, unpredictable symptoms and time away from school, finding opportunities to connect with other young people who understand life with IBD can make a real difference. In the United States, there are camps, youth programs and community activities designed to help children with inflammatory bowel disease (IBD) build friendships, develop confidence and enjoy new experiences. Whether your child is looking for a summer camp, an online program or simply a way to meet other young people living with IBD, there are options for families to explore. 🌟 Camp Oasis: A Summer Camp for Kids with IBD One of the main programs available to children and teenagers with IBD in the USA is Camp Oasis , run by the Crohn's & Colitis Foundation. Camp Oasis offers a supportive summer camp experience specifically for young people living with Crohn's disease or ulcerative colitis. It gives campers the opportunity to enjoy traditional camp activities while spending time with others who understand their experiences. Activities may include: 🏊 Swimming and outdoor recreation. 🎨 Arts, crafts and creative activities. 🏆 Team sports and group games. 🔥 Campfires, talent shows and evening activities. 🤝 Making friends and spending time with other young people who have IBD. Camp Oasis is designed so children can focus on having fun rather than feeling that their illness sets them apart. Medical professionals, including doctors, nurses, mental health professionals and dietitians, support campers' healthcare needs during residential sessions. Who can attend? The program generally accepts children with medically stable Crohn's disease or ulcerative colitis who are entering grades 2–12, subject to the requirements of the individual session. There are residential camps in different parts of the country, with locations and dates varying by year. An online alternative is also available. Cost and financial assistance The Foundation lists a camp attendance fee and offers scholarships for eligible families. Travel assistance may also be available in certain circumstances, so check the current requirements before applying. Find locations, eligibility details and application information on the official Camp Oasis website . 💻 CampOasis@Home: Virtual Camp Activities Not every child can attend a residential camp. Travel, health needs, family commitments or feeling nervous about staying away from home can make an in-person experience difficult. CampOasis@Home offers an online alternative through the Crohn's & Colitis Foundation. It gives children and teenagers an opportunity to participate in camp-style activities and connect with other young people from home. Activities have included: 🎨 Arts and crafts. 🎮 Games and interactive activities. 💬 Virtual cabin chats and opportunities to make friends. 🌱 Wellness activities. This option may suit children who would prefer to meet others online before considering an in-person camp, or families who cannot travel to a residential location. Program availability and session dates vary, so check the Foundation's website for the latest information. Explore the Camp Oasis website for virtual camp details. 🤝 Youth Support and Community Programs Camps are not the only way for young people with IBD to connect with others. Support organisations can help families find educational resources, community activities and opportunities to feel less alone. The Crohn's & Colitis Foundation is a useful starting point for families in the United States. Alongside Camp Oasis, it provides information and resources for children, teenagers and their caregivers. Depending on the opportunities available in your area, families may be able to find: Youth-focused educational events. Community activities and awareness events. Opportunities to connect with other families affected by IBD. Educational resources for young people learning to manage their condition. Ways for older teenagers to become involved in volunteering and leadership. Programs vary between regions, so contact your local Foundation chapter to ask what is available near you. Visit the Crohn's & Colitis Foundation to explore its resources and programs. 🎯 Everyday Activities for Children and Teenagers with IBD Children with IBD do not need to limit themselves to programs specifically designed for people with chronic illnesses. With appropriate planning and flexibility, many can participate in the same activities as their friends. Depending on your child's interests and health, activities to consider include: ⚽ Sports and recreation: School sports, swimming, walking, cycling or recreational teams. 🎨 Creative activities: Art classes, music lessons, drama groups and photography. 🏕️ Community camps: Local day camps or overnight camps that can accommodate your child's medical needs. 🧑🤝🧑 Clubs and youth groups: School clubs, hobby groups and community youth organisations. 🌳 Outdoor activities: Nature walks, accessible outdoor adventures and organised excursions. 💻 Online communities and events: Age-appropriate activities that allow young people to connect from home. The best choice will depend on your child's symptoms, energy levels, treatment schedule and personal preferences. Some children may enjoy a full day of activities, while others may prefer shorter sessions or quieter options. It can help to contact activity organisers before enrolling to discuss bathroom access, medication, dietary needs, rest breaks and what happens if your child becomes unwell. 💚 Helping Your Child Feel Confident Joining In For some children, the hardest part of joining a new activity is worrying about what might happen if their symptoms appear unexpectedly. They may be concerned about needing the bathroom urgently, feeling exhausted, missing an event because of a flare-up or explaining their condition to other children. Parents can help by: Talking through concerns: Ask your child what worries them and involve them in choosing activities. Planning ahead: Find out where the bathrooms are and whether breaks are possible. Communicating with organisers: Explain any essential medical needs and agree on a practical plan. Allowing flexibility: Choose activities where your child can rest, leave early or miss a session if necessary. Protecting privacy: Share only the health information that is necessary and that your child is comfortable sharing, while ensuring responsible adults know what they need to keep your child safe. Celebrating participation: Focus on the enjoyment, friendships and experiences rather than how much your child manages to do. Children should not feel that they have to explain their illness to everyone or push through symptoms to avoid disappointing others. 🩺 What Should Parents Check Before Booking a Camp? Before registering for a camp or youth program, it is worth asking a few practical questions to ensure the experience is suitable for your child. Medical support: Are healthcare professionals available, and how are medications managed? Bathroom access: Are bathrooms easy to reach throughout the day and night? Food and dietary needs: Can the program accommodate your child's individual requirements? Activity flexibility: Can participants rest, take breaks or opt out of activities when necessary? Emergency procedures: What happens if a child develops symptoms or needs medical attention? Communication: How will parents be contacted if their child becomes unwell? Eligibility: Are there medical stability requirements or other participation criteria? Cost: Are scholarships, financial assistance or travel support available? For residential camps, discuss the proposed experience with your child's IBD healthcare team if you have concerns about whether it is appropriate at that time. Planning ahead can help parents feel reassured while allowing children to enjoy greater independence. 💬 Teen Support Groups and Online Communities For teenagers who want to connect with others but are not ready for a residential camp, online support groups can be a valuable alternative. The Crohn's & Colitis Foundation offers a support group directory that families can use to search for groups serving children, teenagers and young adults. Some groups meet virtually, making it possible to connect with others without travelling. One example is IBD Teen , a virtual community listed by the Foundation for teenagers aged 15–18. It offers opportunities to meet others, participate in discussions and share experiences. Meeting schedules and eligibility should be confirmed through the current listing. Find groups through the Crohn's & Colitis Foundation support group directory . 🎨 Educational Resources and Activities for Kids Not every young person wants to join a support group or attend a camp. Some may prefer to explore IBD at their own pace through games, activities and age-appropriate educational resources. The Crohn's & Colitis Foundation provides resources for children and teenagers, including an IBD Activity Center with comics, games and activities designed to make learning about IBD more accessible. Its youth resources also cover topics such as school, friendships, emotional wellbeing and becoming more confident in managing the condition. Explore the Foundation's resources for kids, parents and teens . 🔎 How to Find Programs Near You IBD-specific opportunities can vary depending on where your family lives. Some areas offer local support groups and events, while other families may need to travel or choose virtual activities. To find suitable opportunities: Visit the Crohn's & Colitis Foundation website and look for your local chapter. Search its support group directory for children's, teen or young adult groups. Check Camp Oasis for residential and virtual camp opportunities. Ask your child's paediatric gastroenterology team whether they know of local youth programs or family events. Follow relevant organisations on social media for announcements about new programs, registration dates and upcoming activities. It is worth checking eligibility, costs, travel requirements and registration deadlines early, particularly for residential camps that have limited places. 💚 Final Thoughts Children and teenagers living with Crohn's disease or ulcerative colitis deserve opportunities to have fun, build friendships and experience new things without feeling defined by their illness. From Camp Oasis and virtual youth activities to everyday hobbies and community groups, there are ways for young people with IBD to find connection and develop confidence. Every child is different. Some will love an overnight camp, while others will feel more comfortable starting with an online group or a familiar local activity. The important thing is to find opportunities that suit your child's interests, health needs and comfort level. With the right support, young people with IBD can enjoy meaningful experiences, build lasting friendships and feel less alone. Disclaimer: Program availability, eligibility, costs and medical requirements can change. Contact each organisation directly for current information and consult your child's healthcare team if you have concerns about participation. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like School absences, missed work and catching up Learn how schools in the USA can support students with IBD who miss school due to flare-ups, medical appointments or hospital stays, including managing missed assignments, requesting extensions and accessing educational accommodations. Read More IBD organisations and support networks Discover IBD organisations and support networks in the USA for children, teenagers and families living with Crohn’s disease or ulcerative colitis, including national charities, parent support groups, online communities and paediatric resources. Read More Filling prescriptions and using pharmacies Learn how to fill your child’s IBD prescriptions in the USA, understand pharmacy labels, organise refills, use specialty pharmacies, and navigate insurance requirements to help avoid interruptions to treatment. Read More Understanding your child’s IBD care team Learn about the healthcare professionals involved in your child’s IBD care in the USA, what each person does, and how they work together to support your child’s health and wellbeing. Read More Accessing biologic treatments in Australia Learn how children with Crohn’s disease or ulcerative colitis can access biologic treatments in Australia. Understand specialist assessments, PBS approval requirements, hospital infusions, at-home injections, treatment costs and ongoing monitoring. Read More Camp Fearless: youth camps for young people with IBD Discover Camp Fearless, a youth camp run by Crohn’s & Colitis Australia for teenagers living with Crohn’s disease or ulcerative colitis. Find out what to expect, how young people can connect with others who understand life with IBD, and where to find information about upcoming camps. Read More School support plans & adjustments Learn how Australian schools can support students with Crohn’s disease or ulcerative colitis through individual support plans, toilet access, flexible deadlines, adjustments during flares, and help with absences. Includes guidance for working with your child’s school and a link to our free IBD School Support Plan download. Read More Australian IBD organisations Find Australian IBD organisations, support services and reliable information for children and families living with Crohn’s disease and ulcerative colitis. Discover ways to connect with other families, find IBD services and join the IBD Kids Facebook Group. Read More 504 plans and IEPs for students with IBD Learn how Section 504 Plans and IEPs can support students with Crohn’s disease or ulcerative colitis in the USA, including school accommodations, bathroom access, attendance flexibility, missed work and how to request support. Read More Getting insurance approval for IBD treatments Learn how insurance approval works for children’s Crohn’s disease and ulcerative colitis treatments in the USA. Understand prior authorisation, medication denials, appeals and practical steps families can take to help avoid delays in their child’s care. Read More When to seek medical help for your child’s IBD Learn how to recognise worsening IBD symptoms in your child, when to contact their healthcare team, and when to seek urgent or emergency medical care in the USA. Read More Finding a Pediatric IBD Specialist A guide to finding a pediatric IBD specialist in the USA, including where to look, what to ask, understanding referrals and insurance, and finding the right medical team for your child. Read More Medication safety and monitoring Learn how to keep your child safe while taking medication for Crohn’s disease or ulcerative colitis. Discover why regular blood tests matter, how to reduce infection risks, which vaccination precautions to know, why sun protection is important, and which side effects to watch for. Read More The MLAK key: easier access to toilets across Australia Learn how the MLAK key can help children with Crohn’s disease or ulcerative colitis access compatible locked public toilets across Australia. Find out how to apply, what it costs, where to use it, and how to make outings and family trips a little less stressful. Read More Hospital admissions & emergency care Learn what to expect if your child with Crohn’s disease or ulcerative colitis needs hospital care in Australia, including emergency care, hospital admissions, treatment, what to bring, discharge planning, and support for families. Read More IBD and Australian schools Learn how Australian schools can support students with IBD, including toilet access, absences, fatigue, medication, exams, schoolwork, sport, excursions and reasonable adjustments for Crohn’s disease and ulcerative colitis. Read More Understanding IBD and the US school system Learn how the US school system supports children with Crohn’s disease and ulcerative colitis, including Section 504 Plans, classroom accommodations, bathroom access, medication, school absences and educational support. Read More Understanding IBD treatment costs and out-of-pocket expenses Understand the costs of managing Crohn’s disease or ulcerative colitis in the USA. Learn about specialist appointments, tests, hospital visits, medications, deductibles, copays and coinsurance, plus practical ways to manage medical bills and find financial assistance. Read More Understanding IBD Medication Learn how doctors in the USA choose IBD medications for children, including the factors that influence treatment decisions, different medication options, and how your child’s individual needs guide their care. Read More Mental health and emotional support Explore mental health and emotional support options for Australian children with Crohn’s disease or ulcerative colitis and their families. Learn how to find psychologists, access Medicare rebates, connect with free counselling services, and support your child’s emotional wellbeing at home and school. Read More Medication costs and prescriptions Understand medication costs for children with Crohn’s disease or ulcerative colitis in Australia. Learn about PBS prescription prices, concession cards, the PBS Safety Net, specialist treatments and practical ways to manage ongoing medication expenses. Read More School camps, excursions and sport Learn how Australian schools can help children with Crohn’s disease or ulcerative colitis participate in camps, excursions and sport. Discover practical tips for planning medication, ensuring toilet access, managing symptoms and working with teachers to keep activities safe and inclusive. Read More Medicare & healthcare costs Understand how Medicare works for children with IBD in Australia, including specialist rebates, public and private hospital costs, subsidised medications, Medicare Safety Nets, and ways to manage out-of-pocket healthcare expenses. Read More Australian IBD medications Learn about IBD medications in Australia, including mesalazine, steroids, azathioprine, biologics, the PBS, medication costs, prescriptions, hospital medicines and what parents need to know about managing Crohn’s disease and ulcerative colitis in children. Read More Finding emotional and mental health support Discover emotional and mental health support for children and teenagers with Crohn’s disease or ulcerative colitis in the USA, including therapy, peer support groups, school counselling and resources to help families navigate life with IBD. Read More Understanding health insurance Learn how health insurance works in the USA for children with Crohn’s disease or ulcerative colitis. Explore employer-sponsored plans, private insurance, Medicaid and CHIP, and understand coverage, medication costs, deductibles and financial assistance. Read More IBD appointments, tests and monitoring Understand what to expect from IBD appointments, medical tests, and ongoing monitoring in the USA, including how to prepare, track results, and coordinate your child’s care. Read More Financial assistance for families Explore financial assistance available to Australian families caring for a child with Crohn’s disease or ulcerative colitis. Learn about carer payments, medication subsidies, Medicare Safety Nets, travel assistance, government benefits and support services that may help reduce the financial burden. Read More The National Public Toilet Map: finding toilets across Australia Discover how the free National Public Toilet Map can help families affected by Crohn’s disease or ulcerative colitis find public toilets across Australia. Learn how to search nearby facilities, check opening hours and accessibility, plan trips, and find toilets that require an MLAK key. Read More School attendance & catching up on learning Learn how to manage school absences caused by IBD flares, medical appointments and hospital stays. Discover practical ways to catch up on schoolwork, arrange flexible deadlines, support recovery and help your child return to the classroom with confidence. Read More Finding an IBD specialist in Australia Learn how to find a paediatric gastroenterologist in Australia, get a referral, understand public and private specialist care, and access the right support for your child living with Crohn’s disease or ulcerative colitis. Read More The Australian healthcare system Understand how the Australian healthcare system works for children with IBD, including Medicare, public and private healthcare, GP referrals, paediatric gastroenterologists, hospitals, medications, healthcare costs and finding IBD services across Australia Read More

School USA 504 plans and IEPs for students with IBD Learn how Section 504 Plans and IEPs can support students with Crohn’s disease or ulcerative colitis in the USA, including school accommodations, bathroom access, attendance flexibility, missed work and how to request support. Children and teenagers living with Crohn’s disease or ulcerative colitis may need extra support at school, even when they look healthy. Symptoms such as fatigue, abdominal pain, urgent bathroom visits and unpredictable flare-ups can affect attendance, concentration, participation and learning. In the United States, two important ways schools can provide educational support are Section 504 Plans and Individualized Education Programs (IEPs) . Understanding the difference can help families work with their child’s school to find the right support. 📘 What Is a Section 504 Plan? A Section 504 Plan is a written plan that outlines the accommodations a student with a disability needs to access their education. It is based on Section 504 of the Rehabilitation Act of 1973, a federal civil rights law that protects eligible students with disabilities from discrimination. IBD can qualify as a disability under Section 504 when it substantially limits one or more major life activities. These may include digestive and bowel functions, eating, sleeping, concentrating or attending school. Eligibility depends on the individual student’s circumstances. Importantly, IBD does not have to affect a child every day to qualify. A condition that comes and goes, or is in remission, can still be considered a disability if it would substantially limit a major life activity when active. A Section 504 Plan helps ensure that a student can participate in school and access their education without being unfairly disadvantaged by their medical condition. 📝 What Is an IEP? An Individualized Education Program, commonly called an IEP, is a written plan for students who qualify for special education under the Individuals with Disabilities Education Act (IDEA). An IEP is designed for students whose disability means they need special education and related services , not simply adjustments to their usual classroom arrangements. For a student with IBD, an IEP may be relevant if their medical condition affects their learning and they also meet the legal eligibility requirements for special education. For example, a student who has missed substantial amounts of school and needs specialised instruction to address educational needs may warrant an evaluation. However, having IBD alone does not automatically qualify a student for an IEP. The school must conduct an appropriate evaluation and determine whether the student meets the eligibility criteria under IDEA and applicable state rules. ⚖️ What Is the Difference Between a 504 Plan and an IEP? Both plans can help students with disabilities access their education, but they serve different purposes. A Section 504 Plan focuses on accommodations and services that allow an eligible student to access school and participate in learning. An IEP provides special education and related services for an eligible student who needs specially designed instruction because of a disability. For a student with IBD, a 504 Plan may be appropriate when the main needs involve bathroom access, flexibility with attendance, extra time for assignments or support during flare-ups. An IEP may be appropriate when the student also needs special education services to address their educational needs. A student who qualifies for an IEP does not generally need a separate Section 504 Plan to receive the protections and services provided through their IEP. Schools should consider the student’s individual needs rather than assuming one type of plan is right for every child. 🚽 Accommodations That May Help Students with IBD Every student’s needs are different. Families can work with the school to identify accommodations that address their child’s symptoms, treatment and learning needs. Possible accommodations include: Immediate bathroom access: Allowing the student to leave class whenever necessary without having to wait for permission or explain their symptoms publicly. A bathroom access pass: Providing a discreet pass that allows the student to use the bathroom without drawing attention. Flexible attendance: Taking medical appointments, hospital stays, flare-ups and recovery periods into account when reviewing absences. Assignment extensions: Allowing extra time when symptoms or medical treatment interfere with completing work. Test and exam flexibility: Arranging breaks, additional time or alternative scheduling when medically necessary and appropriate. Access to water, snacks or medication: Permitting these when required by the student’s medical plan and school policies. Rest breaks: Providing a suitable place to rest when fatigue or pain makes it difficult to continue working. Support with missed learning: Helping the student access notes, learning materials and a reasonable plan for catching up after absences. Physical education adjustments: Modifying activities when symptoms, fatigue or medical advice make full participation difficult. A trusted staff contact: Identifying an adult the student can approach if they feel unwell or need help. Privacy and understanding: Ensuring that staff who need to know about the plan understand the student’s needs while respecting their privacy. These are examples rather than guaranteed accommodations. The school should consider which adjustments are necessary and appropriate for the individual student. 🏫 How Do You Request a 504 Plan or IEP? If you think your child needs additional support, start by contacting the school’s principal, school counsellor, school psychologist or designated Section 504 coordinator. Explain how IBD affects your child’s school day, including any difficulties with bathroom urgency, fatigue, attendance, concentration, pain or keeping up with schoolwork. You can request a meeting to discuss a Section 504 evaluation. If you believe your child may need special education, you can also request an evaluation for an IEP. It is helpful to: Put your request in writing. Email the school and clearly explain that you are requesting an evaluation or meeting to discuss your child’s educational needs. Provide relevant medical information. With your consent, documentation from your child’s gastroenterologist or other healthcare professionals may help explain their symptoms, treatment and support needs. Describe the impact on learning. Give examples of missed classes, interrupted lessons, fatigue, difficulty completing assignments or other barriers. Discuss practical accommodations. Identify what would help your child feel safe, participate in class and keep up with learning. Ask about the school’s process. Procedures, forms and timelines can vary, particularly between states and school districts. For public schools, Section 504 eligibility must be assessed individually. Schools have responsibilities to evaluate students when they know or have reason to believe a student may have a disability and need services or accommodations. 📅 What If Your Child Is Having a Flare? IBD symptoms can change considerably over time. A student who usually manages school well may suddenly need additional support during a flare or after hospitalisation. Contact the school as soon as practical to discuss any temporary changes in your child’s needs. This may include more flexible deadlines, a plan for missed lessons, adjustments to attendance expectations or additional communication with teachers. If your child already has a 504 Plan or IEP, ask whether it needs to be reviewed or updated. A written plan should reflect the student’s current needs, rather than relying on informal arrangements that may be forgotten when staff change. A separate Individualized Health Plan (IHP), sometimes called an Individualized Healthcare Plan, may also help document medical care at school. This can include medication instructions, symptoms to watch for and steps school staff should take. An IHP does not replace a required 504 Plan or IEP. 🤝 Working With Your Child’s School A collaborative relationship between families and school staff can make a meaningful difference. Share the information the school needs to support your child, and involve your child in conversations when appropriate for their age and comfort level. Older students may prefer discreet accommodations that allow them to manage their condition more independently. Younger children may need more direct help from teachers, school nurses or other trusted adults. It can also be useful to review the plan at the beginning of each school year, when your child changes schools, or when their symptoms or treatment change. If the school does not respond to your concerns, ask for the district’s Section 504 coordinator or special education department. Families can also seek information from the US Department of Education’s Office for Civil Rights or their state’s parent training and information centre. 🔗 Helpful Resources U.S. Department of Education – Section 504 protections for students with IBD: Read the official IBD fact sheet explaining how Section 504 may protect students with inflammatory bowel disease. U.S. Department of Education – Section 504 information: Explore the official Section 504 guidance and information . U.S. Department of Education – IDEA: Learn about special education eligibility and IEPs through the Individuals with Disabilities Education Act resources . Parent Training and Information Centers: Find your state’s parent support organisation through the Center for Parent Information and Resources . 💙 Helping Your Child Feel Supported at School Every child with IBD deserves the opportunity to learn, build friendships and take part in school life. A Section 504 Plan or IEP may help remove barriers and give students the support they need to manage their health alongside their education. You do not need to wait until your child is failing academically to ask questions. If IBD is making school more difficult, start a conversation with the school and explore what support may be available. This article provides general educational information about US school supports and is not legal advice. Eligibility, procedures and available services depend on the student’s circumstances and applicable laws. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like School absences, missed work and catching up Learn how schools in the USA can support students with IBD who miss school due to flare-ups, medical appointments or hospital stays, including managing missed assignments, requesting extensions and accessing educational accommodations. Read More IBD organisations and support networks Discover IBD organisations and support networks in the USA for children, teenagers and families living with Crohn’s disease or ulcerative colitis, including national charities, parent support groups, online communities and paediatric resources. Read More Filling prescriptions and using pharmacies Learn how to fill your child’s IBD prescriptions in the USA, understand pharmacy labels, organise refills, use specialty pharmacies, and navigate insurance requirements to help avoid interruptions to treatment. Read More Understanding your child’s IBD care team Learn about the healthcare professionals involved in your child’s IBD care in the USA, what each person does, and how they work together to support your child’s health and wellbeing. Read More Accessing biologic treatments in Australia Learn how children with Crohn’s disease or ulcerative colitis can access biologic treatments in Australia. Understand specialist assessments, PBS approval requirements, hospital infusions, at-home injections, treatment costs and ongoing monitoring. Read More Camp Fearless: youth camps for young people with IBD Discover Camp Fearless, a youth camp run by Crohn’s & Colitis Australia for teenagers living with Crohn’s disease or ulcerative colitis. Find out what to expect, how young people can connect with others who understand life with IBD, and where to find information about upcoming camps. Read More School support plans & adjustments Learn how Australian schools can support students with Crohn’s disease or ulcerative colitis through individual support plans, toilet access, flexible deadlines, adjustments during flares, and help with absences. Includes guidance for working with your child’s school and a link to our free IBD School Support Plan download. Read More Australian IBD organisations Find Australian IBD organisations, support services and reliable information for children and families living with Crohn’s disease and ulcerative colitis. Discover ways to connect with other families, find IBD services and join the IBD Kids Facebook Group. Read More Understanding IBD and the US school system Learn how the US school system supports children with Crohn’s disease and ulcerative colitis, including Section 504 Plans, classroom accommodations, bathroom access, medication, school absences and educational support. Read More Getting insurance approval for IBD treatments Learn how insurance approval works for children’s Crohn’s disease and ulcerative colitis treatments in the USA. Understand prior authorisation, medication denials, appeals and practical steps families can take to help avoid delays in their child’s care. Read More When to seek medical help for your child’s IBD Learn how to recognise worsening IBD symptoms in your child, when to contact their healthcare team, and when to seek urgent or emergency medical care in the USA. Read More Finding a Pediatric IBD Specialist A guide to finding a pediatric IBD specialist in the USA, including where to look, what to ask, understanding referrals and insurance, and finding the right medical team for your child. Read More Medication safety and monitoring Learn how to keep your child safe while taking medication for Crohn’s disease or ulcerative colitis. Discover why regular blood tests matter, how to reduce infection risks, which vaccination precautions to know, why sun protection is important, and which side effects to watch for. Read More The MLAK key: easier access to toilets across Australia Learn how the MLAK key can help children with Crohn’s disease or ulcerative colitis access compatible locked public toilets across Australia. Find out how to apply, what it costs, where to use it, and how to make outings and family trips a little less stressful. Read More Hospital admissions & emergency care Learn what to expect if your child with Crohn’s disease or ulcerative colitis needs hospital care in Australia, including emergency care, hospital admissions, treatment, what to bring, discharge planning, and support for families. Read More IBD and Australian schools Learn how Australian schools can support students with IBD, including toilet access, absences, fatigue, medication, exams, schoolwork, sport, excursions and reasonable adjustments for Crohn’s disease and ulcerative colitis. Read More IBD camps, youth programs and activities Explore IBD camps, youth programs and activities in the USA for children and teenagers with Crohn’s disease or ulcerative colitis, including Camp Oasis, virtual camps, support groups and opportunities to make friends. Read More Understanding IBD treatment costs and out-of-pocket expenses Understand the costs of managing Crohn’s disease or ulcerative colitis in the USA. Learn about specialist appointments, tests, hospital visits, medications, deductibles, copays and coinsurance, plus practical ways to manage medical bills and find financial assistance. Read More Understanding IBD Medication Learn how doctors in the USA choose IBD medications for children, including the factors that influence treatment decisions, different medication options, and how your child’s individual needs guide their care. Read More Mental health and emotional support Explore mental health and emotional support options for Australian children with Crohn’s disease or ulcerative colitis and their families. Learn how to find psychologists, access Medicare rebates, connect with free counselling services, and support your child’s emotional wellbeing at home and school. Read More Medication costs and prescriptions Understand medication costs for children with Crohn’s disease or ulcerative colitis in Australia. Learn about PBS prescription prices, concession cards, the PBS Safety Net, specialist treatments and practical ways to manage ongoing medication expenses. Read More School camps, excursions and sport Learn how Australian schools can help children with Crohn’s disease or ulcerative colitis participate in camps, excursions and sport. Discover practical tips for planning medication, ensuring toilet access, managing symptoms and working with teachers to keep activities safe and inclusive. Read More Medicare & healthcare costs Understand how Medicare works for children with IBD in Australia, including specialist rebates, public and private hospital costs, subsidised medications, Medicare Safety Nets, and ways to manage out-of-pocket healthcare expenses. Read More Australian IBD medications Learn about IBD medications in Australia, including mesalazine, steroids, azathioprine, biologics, the PBS, medication costs, prescriptions, hospital medicines and what parents need to know about managing Crohn’s disease and ulcerative colitis in children. Read More Finding emotional and mental health support Discover emotional and mental health support for children and teenagers with Crohn’s disease or ulcerative colitis in the USA, including therapy, peer support groups, school counselling and resources to help families navigate life with IBD. Read More Understanding health insurance Learn how health insurance works in the USA for children with Crohn’s disease or ulcerative colitis. Explore employer-sponsored plans, private insurance, Medicaid and CHIP, and understand coverage, medication costs, deductibles and financial assistance. Read More IBD appointments, tests and monitoring Understand what to expect from IBD appointments, medical tests, and ongoing monitoring in the USA, including how to prepare, track results, and coordinate your child’s care. Read More Financial assistance for families Explore financial assistance available to Australian families caring for a child with Crohn’s disease or ulcerative colitis. Learn about carer payments, medication subsidies, Medicare Safety Nets, travel assistance, government benefits and support services that may help reduce the financial burden. Read More The National Public Toilet Map: finding toilets across Australia Discover how the free National Public Toilet Map can help families affected by Crohn’s disease or ulcerative colitis find public toilets across Australia. Learn how to search nearby facilities, check opening hours and accessibility, plan trips, and find toilets that require an MLAK key. Read More School attendance & catching up on learning Learn how to manage school absences caused by IBD flares, medical appointments and hospital stays. Discover practical ways to catch up on schoolwork, arrange flexible deadlines, support recovery and help your child return to the classroom with confidence. Read More Finding an IBD specialist in Australia Learn how to find a paediatric gastroenterologist in Australia, get a referral, understand public and private specialist care, and access the right support for your child living with Crohn’s disease or ulcerative colitis. Read More The Australian healthcare system Understand how the Australian healthcare system works for children with IBD, including Medicare, public and private healthcare, GP referrals, paediatric gastroenterologists, hospitals, medications, healthcare costs and finding IBD services across Australia Read More

School USA Understanding IBD and the US school system Learn how the US school system supports children with Crohn’s disease and ulcerative colitis, including Section 504 Plans, classroom accommodations, bathroom access, medication, school absences and educational support. For children and teenagers living with Crohn’s disease or ulcerative colitis, school can involve more than lessons, homework and making friends. Unpredictable symptoms, frequent bathroom trips, fatigue, medical appointments and hospital stays can all affect a student’s school experience. In the United States, there are systems in place to help students with inflammatory bowel disease (IBD) access their education while managing their health. Understanding how American schools work and what support may be available can help families feel more prepared and confident when advocating for their child. 🎒 How Does the US School System Work? In the United States, children generally attend elementary school, middle school and high school. The exact grade levels and school arrangements vary between states and school districts. Elementary school: Usually kindergarten through grade 5, although this varies by district. Middle school: Commonly grades 6–8. High school: Commonly grades 9–12. Public schools are generally managed by local school districts, which means policies and procedures can differ depending on where your child attends school. For students with IBD, this can affect how schools manage bathroom access, medication, absences, missed assignments and individual health needs. Families should contact their child's school to understand its procedures and discuss the accommodations their child may need. 🩺 How Can IBD Affect School? IBD can affect students differently. Some children experience long periods of remission, while others have ongoing symptoms or unpredictable flare-ups that interfere with their daily routines. Challenges at school may include: Urgent bathroom needs: Students may need to leave class without warning or use the bathroom more frequently than their classmates. Abdominal pain and discomfort: Symptoms can make it difficult to concentrate, sit comfortably or participate in lessons. Fatigue: IBD, poor sleep, inflammation and some treatments can leave students feeling exhausted. Medical appointments: Gastroenterology appointments, blood tests, infusions and other treatments may require time away from school. Flare-ups and hospital stays: Periods of active disease can result in extended absences and difficulty keeping up with schoolwork. Medication and dietary needs: Some students need medication during the school day, access to snacks or drinks, or adjustments to physical education. Emotional and social challenges: Worry about accidents, embarrassment, falling behind or explaining symptoms to classmates can affect a student's confidence and wellbeing. These challenges are not always visible to teachers. A student may appear well while experiencing significant pain, fatigue or anxiety. 📋 What Is a Section 504 Plan? One of the most important things for families to understand is the Section 504 Plan , commonly called a 504 Plan. Section 504 of the Rehabilitation Act of 1973 is a US federal civil rights law that protects eligible students with disabilities from discrimination in education. Crohn's disease and ulcerative colitis may qualify because they can substantially limit major life activities, even when symptoms fluctuate or are controlled by treatment. A 504 Plan is a written document outlining the accommodations a student needs to access their education. It is designed to address the individual student's circumstances rather than apply the same arrangements to every child. For example, a student with IBD might need unrestricted bathroom access, while another might need additional time for assignments following a hospital admission. Some students may need several accommodations, while others need only a few. A diagnosis does not automatically mean that every student will receive a 504 Plan. The school must consider the student's individual needs and eligibility under the applicable requirements. ✏️ What Accommodations Can a 504 Plan Include? Depending on the student's needs, accommodations may include: Unrestricted bathroom access without needing to wait for permission. Permission to use a private or more convenient bathroom. A discreet signal to tell a teacher that the student needs to leave class urgently. Permission to carry emergency supplies or a change of clothes. Access to water, drinks and snacks when medically necessary. Arrangements for taking medication during the school day. Seating near the classroom exit or a bathroom. Additional time for tests or permission to pause an exam for bathroom breaks. Extensions on assignments and support with missed coursework. Flexibility around attendance for medical appointments, treatment and illness. Adjustments to physical education and other activities when necessary. A plan for longer absences, including appropriate tutoring or other educational support. Access to a school counsellor or other support for emotional wellbeing. Not every student needs every accommodation. The goal is to identify what will help your child participate in school as safely and comfortably as possible. The Crohn's & Colitis Foundation provides a sample Section 504 Plan for children with IBD that families can use when preparing for discussions with their school. 📝 How Do You Request a 504 Plan? If your child has Crohn's disease or ulcerative colitis, you can begin by contacting the school principal, guidance counsellor or staff member responsible for disability accommodations. A practical approach is to: 1. Contact the school. Explain that your child has IBD and that you would like to discuss whether a 504 Plan or other support is appropriate. 2. Gather medical information. Your child's gastroenterologist or other healthcare professional may be able to provide documentation explaining the diagnosis, symptoms, treatment requirements and how the condition affects school participation. 3. Identify your child's needs. Think about bathroom access, medication, fatigue, absences, emergency supplies, tests, assignments and any other challenges your child experiences. 4. Meet with the school. Discuss the accommodations that would help your child and how staff will put them into practice. 5. Get the arrangements in writing. Make sure the agreed accommodations are clearly documented and that relevant staff understand their responsibilities. 6. Review the plan when needed. IBD can change over time. Review the arrangements if your child's symptoms, treatment or school needs change, and check the school's process for periodic reviews. It is worth starting this conversation before the school year begins, if possible. Having arrangements in place before a flare-up occurs can make a difficult period easier to manage. 🏫 What About Students Who Attend Private Schools? The protections and procedures available to students can depend on the type of school and the applicable laws. Section 504 applies to public schools and other education programs that receive federal financial assistance. Private schools may have different obligations depending on their funding, status and circumstances. The Americans with Disabilities Act (ADA) may also apply to certain schools. If your child attends a private school, ask the school which disability protections apply and what process it uses to consider accommodations for students with chronic illnesses. Families who are unsure about their child's rights can seek guidance from the US Department of Education's Office for Civil Rights or a qualified disability rights professional. 📚 Managing Absences and Missed Schoolwork Missing school can be one of the most stressful parts of living with IBD. Even when a child is medically unable to attend, they may worry about unfinished assignments, falling behind their classmates or missing important tests. Families can work with the school to establish a clear process for: Notifying teachers about absences. Obtaining class notes, lesson materials and assignments. Rescheduling tests and examinations. Requesting reasonable extensions for work affected by illness. Prioritising essential assignments after returning to school. Arranging appropriate educational support during longer absences. A 504 Plan may include accommodations for these situations. Students who need more extensive special education services may also be eligible for support under the Individuals with Disabilities Education Act (IDEA), depending on their individual circumstances. Schools may have attendance requirements and procedures for documenting absences, so it is helpful to understand these early and discuss how medically necessary absences will be handled. The aim is to help students continue learning without placing unrealistic expectations on them when they are unwell. 💊 Medication and Healthcare at School Some students need to take medication during school hours, manage treatment side effects or attend appointments during the school day. Families should speak with the school nurse or appropriate staff member about the school's medication policy. Depending on the student's age, medical needs and school rules, arrangements may include medication being stored and administered by authorised staff or permission for the student to carry and self-administer certain medication. It is also helpful to clarify: Who will administer medication and when. How urgent symptoms will be handled. What to do if a student feels unwell during class. Who will contact the family in an emergency. Whether the student needs access to a private space or emergency supplies. Medication requirements and procedures vary between states, districts and schools. Families should confirm the arrangements directly with their child's school and healthcare team. 💚 Helping Your Child Feel Comfortable at School Practical accommodations are important, but so is making sure your child feels understood and supported. IBD can be difficult to explain to other people, particularly when symptoms involve bathroom urgency, accidents or fatigue. Children and teenagers may worry about being treated differently or having their diagnosis shared without their permission. Here are some ways to help: Encourage your child to have a voice. Involve them in discussions about what would make school easier, taking their age and comfort level into account. Protect their privacy. Agree on which staff members need to know about their condition and what information can be shared. Your child should not have to explain their diagnosis to every teacher or classmate. Create a simple emergency plan. Your child should know where they can go if they feel unwell, who they can approach for help and how to contact you when necessary. Prepare for difficult days. An emergency kit containing spare underwear, a change of clothes, wipes and other personal supplies can provide reassurance. Keep communication open. Check in with your child about how they are coping academically, socially and emotionally. Encourage them to speak up if an arrangement is not working. Remember that support can change. A child who feels well at the start of the school year may need additional flexibility during a flare-up. With appropriate support, students with IBD can continue to learn, build friendships and participate in school life. 🔗 Where Can Families Find Help? The following organisations provide useful information about IBD and school accommodations in the United States. Crohn's & Colitis Foundation A leading US organisation offering information for families, practical school guidance and resources about 504 Plans. Website: https://www.crohnscolitisfoundation.org/ US Department of Education – Office for Civil Rights Provides information about federal civil rights protections in education, including Section 504. Website: https://www.ed.gov/about/ed-offices/ocr US Department of Education – IDEA Provides information about special education rights and services under the Individuals with Disabilities Education Act. Website: https://sites.ed.gov/idea/ Your Child's School District Your local school district can explain its process for requesting accommodations, identify the appropriate staff members and provide information about local policies. 💚 Final Thoughts Navigating school with IBD can feel overwhelming, especially when symptoms are unpredictable and every school seems to have its own procedures. However, families do not have to manage these challenges alone. Understanding Section 504 Plans, communicating with school staff and planning for bathroom access, absences and medical needs can help children with Crohn's disease and ulcerative colitis feel more secure at school. Most importantly, your child deserves the opportunity to learn, make friends and enjoy being a student without their illness becoming an unnecessary barrier to their education. Disclaimer: This article provides general educational information and is not legal or medical advice. Eligibility for accommodations and the protections available depend on individual circumstances and applicable laws. Contact your child's school or a qualified professional for guidance specific to your situation. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like IBD camps, youth programs and activities Explore IBD camps, youth programs and activities in the USA for children and teenagers with Crohn’s disease or ulcerative colitis, including Camp Oasis, virtual camps, support groups and opportunities to make friends. Read More Understanding IBD treatment costs and out-of-pocket expenses Understand the costs of managing Crohn’s disease or ulcerative colitis in the USA. Learn about specialist appointments, tests, hospital visits, medications, deductibles, copays and coinsurance, plus practical ways to manage medical bills and find financial assistance. Read More Understanding IBD Medication Learn how doctors in the USA choose IBD medications for children, including the factors that influence treatment decisions, different medication options, and how your child’s individual needs guide their care. Read More Mental health and emotional support Explore mental health and emotional support options for Australian children with Crohn’s disease or ulcerative colitis and their families. Learn how to find psychologists, access Medicare rebates, connect with free counselling services, and support your child’s emotional wellbeing at home and school. Read More Medication costs and prescriptions Understand medication costs for children with Crohn’s disease or ulcerative colitis in Australia. Learn about PBS prescription prices, concession cards, the PBS Safety Net, specialist treatments and practical ways to manage ongoing medication expenses. Read More School camps, excursions and sport Learn how Australian schools can help children with Crohn’s disease or ulcerative colitis participate in camps, excursions and sport. Discover practical tips for planning medication, ensuring toilet access, managing symptoms and working with teachers to keep activities safe and inclusive. Read More Medicare & healthcare costs Understand how Medicare works for children with IBD in Australia, including specialist rebates, public and private hospital costs, subsidised medications, Medicare Safety Nets, and ways to manage out-of-pocket healthcare expenses. Read More Australian IBD medications Learn about IBD medications in Australia, including mesalazine, steroids, azathioprine, biologics, the PBS, medication costs, prescriptions, hospital medicines and what parents need to know about managing Crohn’s disease and ulcerative colitis in children. Read More Finding emotional and mental health support Discover emotional and mental health support for children and teenagers with Crohn’s disease or ulcerative colitis in the USA, including therapy, peer support groups, school counselling and resources to help families navigate life with IBD. Read More Understanding health insurance Learn how health insurance works in the USA for children with Crohn’s disease or ulcerative colitis. Explore employer-sponsored plans, private insurance, Medicaid and CHIP, and understand coverage, medication costs, deductibles and financial assistance. Read More IBD appointments, tests and monitoring Understand what to expect from IBD appointments, medical tests, and ongoing monitoring in the USA, including how to prepare, track results, and coordinate your child’s care. Read More Financial assistance for families Explore financial assistance available to Australian families caring for a child with Crohn’s disease or ulcerative colitis. Learn about carer payments, medication subsidies, Medicare Safety Nets, travel assistance, government benefits and support services that may help reduce the financial burden. Read More The National Public Toilet Map: finding toilets across Australia Discover how the free National Public Toilet Map can help families affected by Crohn’s disease or ulcerative colitis find public toilets across Australia. Learn how to search nearby facilities, check opening hours and accessibility, plan trips, and find toilets that require an MLAK key. Read More School attendance & catching up on learning Learn how to manage school absences caused by IBD flares, medical appointments and hospital stays. Discover practical ways to catch up on schoolwork, arrange flexible deadlines, support recovery and help your child return to the classroom with confidence. Read More Finding an IBD specialist in Australia Learn how to find a paediatric gastroenterologist in Australia, get a referral, understand public and private specialist care, and access the right support for your child living with Crohn’s disease or ulcerative colitis. Read More The Australian healthcare system Understand how the Australian healthcare system works for children with IBD, including Medicare, public and private healthcare, GP referrals, paediatric gastroenterologists, hospitals, medications, healthcare costs and finding IBD services across Australia Read More IBD organisations and support networks Discover IBD organisations and support networks in the USA for children, teenagers and families living with Crohn’s disease or ulcerative colitis, including national charities, parent support groups, online communities and paediatric resources. Read More Filling prescriptions and using pharmacies Learn how to fill your child’s IBD prescriptions in the USA, understand pharmacy labels, organise refills, use specialty pharmacies, and navigate insurance requirements to help avoid interruptions to treatment. Read More Understanding your child’s IBD care team Learn about the healthcare professionals involved in your child’s IBD care in the USA, what each person does, and how they work together to support your child’s health and wellbeing. Read More Accessing biologic treatments in Australia Learn how children with Crohn’s disease or ulcerative colitis can access biologic treatments in Australia. Understand specialist assessments, PBS approval requirements, hospital infusions, at-home injections, treatment costs and ongoing monitoring. Read More Camp Fearless: youth camps for young people with IBD Discover Camp Fearless, a youth camp run by Crohn’s & Colitis Australia for teenagers living with Crohn’s disease or ulcerative colitis. Find out what to expect, how young people can connect with others who understand life with IBD, and where to find information about upcoming camps. Read More School support plans & adjustments Learn how Australian schools can support students with Crohn’s disease or ulcerative colitis through individual support plans, toilet access, flexible deadlines, adjustments during flares, and help with absences. Includes guidance for working with your child’s school and a link to our free IBD School Support Plan download. Read More Australian IBD organisations Find Australian IBD organisations, support services and reliable information for children and families living with Crohn’s disease and ulcerative colitis. Discover ways to connect with other families, find IBD services and join the IBD Kids Facebook Group. Read More Getting insurance approval for IBD treatments Learn how insurance approval works for children’s Crohn’s disease and ulcerative colitis treatments in the USA. Understand prior authorisation, medication denials, appeals and practical steps families can take to help avoid delays in their child’s care. Read More When to seek medical help for your child’s IBD Learn how to recognise worsening IBD symptoms in your child, when to contact their healthcare team, and when to seek urgent or emergency medical care in the USA. Read More Finding a Pediatric IBD Specialist A guide to finding a pediatric IBD specialist in the USA, including where to look, what to ask, understanding referrals and insurance, and finding the right medical team for your child. Read More Medication safety and monitoring Learn how to keep your child safe while taking medication for Crohn’s disease or ulcerative colitis. Discover why regular blood tests matter, how to reduce infection risks, which vaccination precautions to know, why sun protection is important, and which side effects to watch for. Read More The MLAK key: easier access to toilets across Australia Learn how the MLAK key can help children with Crohn’s disease or ulcerative colitis access compatible locked public toilets across Australia. Find out how to apply, what it costs, where to use it, and how to make outings and family trips a little less stressful. Read More Hospital admissions & emergency care Learn what to expect if your child with Crohn’s disease or ulcerative colitis needs hospital care in Australia, including emergency care, hospital admissions, treatment, what to bring, discharge planning, and support for families. Read More IBD and Australian schools Learn how Australian schools can support students with IBD, including toilet access, absences, fatigue, medication, exams, schoolwork, sport, excursions and reasonable adjustments for Crohn’s disease and ulcerative colitis. Read More

Support USA IBD organisations and support networks Discover IBD organisations and support networks in the USA for children, teenagers and families living with Crohn’s disease or ulcerative colitis, including national charities, parent support groups, online communities and paediatric resources. When a child is diagnosed with Crohn’s disease or ulcerative colitis, families often have many questions. Finding reliable information, connecting with other parents and helping children meet people who understand their experiences can make navigating life with inflammatory bowel disease (IBD) feel less overwhelming. Across the United States, several organisations provide education, support groups, family resources and opportunities for children and teenagers to connect with others living with IBD. Whether you are looking for practical advice, emotional support, local events or an online community, these resources can help your family feel more informed and less alone. 🏢 Crohn's & Colitis Foundation The Crohn's & Colitis Foundation is one of the leading nonprofit organisations supporting people living with Crohn's disease and ulcerative colitis in the United States. The Foundation provides resources for patients, parents, caregivers and healthcare professionals, covering everything from understanding a diagnosis to managing treatment and navigating everyday life. Families can access: 📚 Educational resources: Information about Crohn's disease, ulcerative colitis, treatments, nutrition and managing symptoms. 🤝 Support groups: Opportunities for parents, caregivers, children, teenagers and adults to connect with others. 🏕️ Camp Oasis: A summer camp program for children and teenagers living with IBD. 💬 Peer support: Programs that connect people with others who have experience living with IBD. 🏫 School resources: Information about educational accommodations, school attendance and helping children manage IBD at school. 📍 Local events: Opportunities to participate in community activities, awareness events and fundraising initiatives. The Foundation also operates an IBD Help Center, where families can seek information and guidance from its information specialists. Visit the Crohn's & Colitis Foundation to explore its resources and find support groups in your area. 👨👩👧 IBD Support Groups for Parents and Caregivers Having a child with IBD can bring challenges that other parents may not fully understand. Parents and caregivers may have questions about treatment, school, food, hospital admissions and helping their child cope emotionally. Connecting with other families who have similar experiences can provide reassurance, practical ideas and a sense of community. The Crohn's & Colitis Foundation has a searchable support group directory that includes groups for parents, caregivers, families and friends. Depending on the location, options may include in-person meetings, virtual groups or a combination of both. These groups can provide opportunities to: Share experiences with other parents raising children with IBD. Learn how other families manage everyday challenges. Discuss school accommodations and communicating with teachers. Exchange practical advice about appointments, treatment and hospital stays. Find emotional support during difficult periods. Celebrate progress and milestones with people who understand. You do not necessarily need to live near a major city to find support. Virtual groups may allow families to participate from home. Explore the Crohn's & Colitis Foundation support group directory to search for parent, caregiver and family groups. 🧒 Support for Children and Teenagers with IBD Children and teenagers may benefit from connecting with others their own age who understand what it is like to live with a chronic illness. The Crohn's & Colitis Foundation offers youth-focused opportunities, including support groups and Camp Oasis, to help young people build friendships and feel less isolated. Depending on what is available, children and teenagers may be able to participate in age-appropriate support groups, virtual meetings, educational activities and community events. These opportunities can help young people: Meet others who understand their experiences. Feel more confident talking about IBD. Share coping strategies for school and social situations. Learn more about their condition. Develop friendships and a sense of belonging. Families can search for youth groups through the Foundation's support group directory and explore Camp Oasis . Availability, age requirements and meeting arrangements vary between programs. 💻 IBD Kids – An Online Community for Families Finding support does not always mean attending an event or joining a formal support group. Online communities can also help parents and caregivers connect, ask questions and share their experiences. IBD Kids is a community focused on helping families navigate life with childhood IBD. Through our website and Facebook group , families can find information and connect with others who understand the challenges of raising a child with Crohn's disease or ulcerative colitis. An online community can be particularly helpful for parents who live far from specialist services, are new to an IBD diagnosis or simply want to hear from people who have been through similar experiences. Families can use online communities to share experiences, discuss everyday challenges and find reassurance that they are not navigating childhood IBD alone. When participating in online groups, remember that every child's experience is different. Personal stories can be helpful, but treatment decisions should always be discussed with your child's healthcare team. 🩺 Pediatric IBD Foundation The Pediatric IBD Foundation focuses specifically on improving the lives of children with Crohn's disease and ulcerative colitis through advocacy, education and research. Its resources are particularly relevant to families navigating childhood IBD, including those looking for information about the practical challenges that can arise during childhood and adolescence. The Foundation provides information for parents about topics such as: Understanding paediatric IBD. School and everyday life. Health insurance. Travel. Educational resources and practical family tools. It also advocates for the needs of children affected by IBD. Visit the Pediatric IBD Foundation to explore its family resources. 🏥 Your Child's Paediatric IBD Team Although nonprofit organisations and peer communities can provide valuable support, your child's healthcare team is another important source of information. Paediatric gastroenterology centres may offer access to nurses, dietitians, social workers, psychologists and other professionals who understand the needs of children with IBD. Depending on the hospital or clinic, families may also be able to learn about local support groups, educational sessions and family resources. Consider asking your child's healthcare team: Are there any local IBD support groups for parents or children? Does the hospital offer psychological support or counselling? Are there educational sessions for newly diagnosed families? Can you recommend trusted online resources? Are there local camps, youth activities or family events? Your child's healthcare team can help you identify support that suits your family's circumstances and your child's individual needs. 📍 How to Find Support in Your Area Support services vary across the United States, so it may take a little searching to find the right community for your family. Here are some practical ways to get started: 1. Search by location. Use the Crohn's & Colitis Foundation's directory to find groups in your state or local area. 2. Look for virtual options. If there are no suitable local groups, ask about online meetings and virtual support programs. 3. Ask your healthcare team. Your child's gastroenterologist or IBD nurse may know about local family networks and paediatric resources. 4. Explore youth programs. Look into Camp Oasis and age-appropriate support groups if your child wants to connect with other young people living with IBD. 5. Try different forms of support. Some families prefer structured support groups, while others find informal online communities more comfortable. 6. Check the details before joining. Confirm eligibility, age requirements, meeting schedules, costs and privacy arrangements. It is okay to explore different options until you find a community where your family feels comfortable and supported. 💚 Final Thoughts Living with childhood IBD can sometimes feel isolating, particularly when friends, teachers or other families do not fully understand the condition. Fortunately, families in the USA have access to organisations, support groups and online communities that can provide information, practical guidance and opportunities to connect with others who share similar experiences. From the Crohn's & Colitis Foundation and Pediatric IBD Foundation to parent networks and the IBD Kids community, there are different ways to find support for both children and caregivers. You do not have to navigate childhood IBD alone. Finding the right community can help your family feel more informed, connected and confident as you move forward. Disclaimer: This article provides general educational information and is not a substitute for professional medical advice. Organisations, programs and support group availability may change. Contact each organisation directly for current information, and consult your child's healthcare team about medical decisions. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like Understanding IBD and the US school system Learn how the US school system supports children with Crohn’s disease and ulcerative colitis, including Section 504 Plans, classroom accommodations, bathroom access, medication, school absences and educational support. Read More Understanding IBD treatment costs and out-of-pocket expenses Understand the costs of managing Crohn’s disease or ulcerative colitis in the USA. Learn about specialist appointments, tests, hospital visits, medications, deductibles, copays and coinsurance, plus practical ways to manage medical bills and find financial assistance. Read More Understanding IBD Medication Learn how doctors in the USA choose IBD medications for children, including the factors that influence treatment decisions, different medication options, and how your child’s individual needs guide their care. Read More Mental health and emotional support Explore mental health and emotional support options for Australian children with Crohn’s disease or ulcerative colitis and their families. Learn how to find psychologists, access Medicare rebates, connect with free counselling services, and support your child’s emotional wellbeing at home and school. Read More Medication costs and prescriptions Understand medication costs for children with Crohn’s disease or ulcerative colitis in Australia. Learn about PBS prescription prices, concession cards, the PBS Safety Net, specialist treatments and practical ways to manage ongoing medication expenses. Read More School camps, excursions and sport Learn how Australian schools can help children with Crohn’s disease or ulcerative colitis participate in camps, excursions and sport. Discover practical tips for planning medication, ensuring toilet access, managing symptoms and working with teachers to keep activities safe and inclusive. Read More Medicare & healthcare costs Understand how Medicare works for children with IBD in Australia, including specialist rebates, public and private hospital costs, subsidised medications, Medicare Safety Nets, and ways to manage out-of-pocket healthcare expenses. Read More Australian IBD medications Learn about IBD medications in Australia, including mesalazine, steroids, azathioprine, biologics, the PBS, medication costs, prescriptions, hospital medicines and what parents need to know about managing Crohn’s disease and ulcerative colitis in children. Read More IBD camps, youth programs and activities Explore IBD camps, youth programs and activities in the USA for children and teenagers with Crohn’s disease or ulcerative colitis, including Camp Oasis, virtual camps, support groups and opportunities to make friends. Read More Understanding health insurance Learn how health insurance works in the USA for children with Crohn’s disease or ulcerative colitis. Explore employer-sponsored plans, private insurance, Medicaid and CHIP, and understand coverage, medication costs, deductibles and financial assistance. Read More IBD appointments, tests and monitoring Understand what to expect from IBD appointments, medical tests, and ongoing monitoring in the USA, including how to prepare, track results, and coordinate your child’s care. Read More Financial assistance for families Explore financial assistance available to Australian families caring for a child with Crohn’s disease or ulcerative colitis. Learn about carer payments, medication subsidies, Medicare Safety Nets, travel assistance, government benefits and support services that may help reduce the financial burden. Read More The National Public Toilet Map: finding toilets across Australia Discover how the free National Public Toilet Map can help families affected by Crohn’s disease or ulcerative colitis find public toilets across Australia. Learn how to search nearby facilities, check opening hours and accessibility, plan trips, and find toilets that require an MLAK key. Read More School attendance & catching up on learning Learn how to manage school absences caused by IBD flares, medical appointments and hospital stays. Discover practical ways to catch up on schoolwork, arrange flexible deadlines, support recovery and help your child return to the classroom with confidence. Read More Finding an IBD specialist in Australia Learn how to find a paediatric gastroenterologist in Australia, get a referral, understand public and private specialist care, and access the right support for your child living with Crohn’s disease or ulcerative colitis. Read More The Australian healthcare system Understand how the Australian healthcare system works for children with IBD, including Medicare, public and private healthcare, GP referrals, paediatric gastroenterologists, hospitals, medications, healthcare costs and finding IBD services across Australia Read More Finding emotional and mental health support Discover emotional and mental health support for children and teenagers with Crohn’s disease or ulcerative colitis in the USA, including therapy, peer support groups, school counselling and resources to help families navigate life with IBD. Read More Filling prescriptions and using pharmacies Learn how to fill your child’s IBD prescriptions in the USA, understand pharmacy labels, organise refills, use specialty pharmacies, and navigate insurance requirements to help avoid interruptions to treatment. Read More Understanding your child’s IBD care team Learn about the healthcare professionals involved in your child’s IBD care in the USA, what each person does, and how they work together to support your child’s health and wellbeing. Read More Accessing biologic treatments in Australia Learn how children with Crohn’s disease or ulcerative colitis can access biologic treatments in Australia. Understand specialist assessments, PBS approval requirements, hospital infusions, at-home injections, treatment costs and ongoing monitoring. Read More Camp Fearless: youth camps for young people with IBD Discover Camp Fearless, a youth camp run by Crohn’s & Colitis Australia for teenagers living with Crohn’s disease or ulcerative colitis. Find out what to expect, how young people can connect with others who understand life with IBD, and where to find information about upcoming camps. Read More School support plans & adjustments Learn how Australian schools can support students with Crohn’s disease or ulcerative colitis through individual support plans, toilet access, flexible deadlines, adjustments during flares, and help with absences. Includes guidance for working with your child’s school and a link to our free IBD School Support Plan download. Read More Australian IBD organisations Find Australian IBD organisations, support services and reliable information for children and families living with Crohn’s disease and ulcerative colitis. Discover ways to connect with other families, find IBD services and join the IBD Kids Facebook Group. Read More Getting insurance approval for IBD treatments Learn how insurance approval works for children’s Crohn’s disease and ulcerative colitis treatments in the USA. Understand prior authorisation, medication denials, appeals and practical steps families can take to help avoid delays in their child’s care. Read More When to seek medical help for your child’s IBD Learn how to recognise worsening IBD symptoms in your child, when to contact their healthcare team, and when to seek urgent or emergency medical care in the USA. Read More Finding a Pediatric IBD Specialist A guide to finding a pediatric IBD specialist in the USA, including where to look, what to ask, understanding referrals and insurance, and finding the right medical team for your child. Read More Medication safety and monitoring Learn how to keep your child safe while taking medication for Crohn’s disease or ulcerative colitis. Discover why regular blood tests matter, how to reduce infection risks, which vaccination precautions to know, why sun protection is important, and which side effects to watch for. Read More The MLAK key: easier access to toilets across Australia Learn how the MLAK key can help children with Crohn’s disease or ulcerative colitis access compatible locked public toilets across Australia. Find out how to apply, what it costs, where to use it, and how to make outings and family trips a little less stressful. Read More Hospital admissions & emergency care Learn what to expect if your child with Crohn’s disease or ulcerative colitis needs hospital care in Australia, including emergency care, hospital admissions, treatment, what to bring, discharge planning, and support for families. Read More IBD and Australian schools Learn how Australian schools can support students with IBD, including toilet access, absences, fatigue, medication, exams, schoolwork, sport, excursions and reasonable adjustments for Crohn’s disease and ulcerative colitis. Read More

Support USA Finding emotional and mental health support A guide to finding mental health professionals, school-based support and IBD communities to help children and teens manage the emotional challenges of living with Crohn’s disease or ulcerative colitis in the USA. Living with Crohn’s disease or ulcerative colitis can affect much more than a child’s physical health. For children and teenagers, managing a chronic illness alongside school, friendships, family life and growing up can sometimes feel overwhelming. Some young people may experience anxiety about flare-ups, embarrassment about bathroom urgency, frustration with treatment or sadness about missing out on activities. Others may worry about how their illness affects their friendships or feel different from their peers. In the United States, families can access a range of emotional and mental health resources to help children and teenagers navigate these challenges. From professional counselling and school support to IBD-specific support groups, finding the right help can make a meaningful difference. 🧠 How Can IBD Affect Mental Health? Every child responds to an IBD diagnosis differently. Some adjust relatively easily, while others may need additional support as they learn to manage their condition. Emotional challenges can occur at diagnosis, during a flare-up, when starting a new treatment or even during periods when symptoms are well controlled. Children and teenagers may experience: Anxiety: Worrying about symptoms returning, needing the bathroom urgently or becoming unwell at school. Frustration: Feeling upset about medical appointments, medications, dietary restrictions or missing activities. Sadness or loneliness: Feeling different from friends who do not understand what living with IBD involves. Body image concerns: Struggling with changes related to illness, medication, growth or surgery. Social anxiety: Worrying about sleepovers, school trips, dating or eating in front of other people. School-related stress: Feeling overwhelmed by missed lessons, assignments or the pressure to keep up. Loss of independence: Feeling frustrated about needing help with medication, appointments or everyday activities. Not every child will experience these difficulties, and having IBD does not automatically mean a child will develop a mental health condition. However, persistent sadness, anxiety, withdrawal from friends, changes in sleep or ongoing difficulties coping are worth discussing with your child's healthcare team. 🩺 Talk to Your Child's IBD Healthcare Team One of the best places to start is with your child's paediatric gastroenterologist or IBD healthcare team. These professionals understand the challenges associated with managing a chronic illness during childhood and adolescence. They may be able to discuss emotional wellbeing during appointments, identify concerns and recommend appropriate support. Depending on your child's needs, the team may include a psychologist, social worker, counsellor or other mental health professional. You can ask questions such as: Is there a psychologist who specialises in children with chronic illnesses? Can someone help my child cope with anxiety about symptoms or treatment? Are there mental health professionals experienced in paediatric IBD? Does our hospital offer psychological support for children and families? Are there local support groups or programs for young people with IBD? You do not need to wait until your child is struggling significantly before asking for help. Early support can help children develop coping strategies and feel more confident managing their condition. 💬 Finding a Therapist or Mental Health Professional Some children benefit from speaking with a mental health professional who can help them work through the emotional challenges of living with IBD. Depending on your child's needs, you may wish to look for a licensed psychologist, clinical social worker, counsellor or other appropriately qualified mental health professional with experience supporting children and adolescents with chronic illnesses. A therapist may help your child: Develop strategies for managing anxiety and stress. Cope with frustration, sadness or uncertainty. Build confidence and self-esteem. Navigate friendships and social situations. Adjust to a new diagnosis or changes in their health. Develop practical coping skills for medical procedures and treatment. Communicate their feelings and needs more comfortably. Cognitive behavioural therapy (CBT) is one approach that may help with anxiety and other emotional difficulties. The most appropriate support will depend on the individual child and their circumstances. How can you find a therapist in the USA? Start by asking your child's gastroenterologist, paediatrician or primary care provider for a referral. You can also contact your health insurance company to find out which mental health professionals are covered by your plan. The following resources may help: FindTreatment.gov : A US government resource for locating mental health and substance use treatment services. Psychology Today – Find a Therapist : A searchable directory of therapists that can help families explore local providers and their areas of experience. Crohn's & Colitis Foundation : Offers IBD-specific information and support resources for children, teenagers and families. When contacting a provider, ask whether they have experience working with children who have chronic illnesses, whether they offer virtual appointments and whether they accept your family's insurance. 🤝 Connecting with Other Young People Who Have IBD Sometimes, one of the most helpful things for a child is meeting someone who understands what they are going through without needing a lengthy explanation. Connecting with other children and teenagers living with Crohn's disease or ulcerative colitis can help reduce feelings of isolation and create opportunities to share experiences, coping strategies and encouragement. The Crohn's & Colitis Foundation offers age-appropriate support programs for young people, including: IBD Kidz Littles: For children aged 5–10. IBD Kidz Middles: For children aged 11–14. IBD Teens: For teenagers aged 15–18. hese programs provide opportunities to connect with peers, build friendships and develop coping skills in an age-appropriate environment. Availability and meeting formats can vary by location. Families can explore the Crohn's & Colitis Foundation's support group directory to look for relevant groups. Online groups may be particularly useful for families who live far from a major city or whose children are unable to attend in-person activities. When choosing an online community, check that it is appropriately moderated, suitable for your child's age and respectful of their privacy. 🏫 Emotional Support at School School can be a significant source of stress for children with IBD, particularly when symptoms are unpredictable or they have missed time because of appointments, treatment or flare-ups. Children may worry about falling behind, explaining their illness to teachers or managing bathroom urgency around classmates. Schools can be an important part of a child's support network. Depending on their needs, families can speak with a school counsellor, psychologist, nurse or trusted teacher about ways to make the school day more manageable. Possible supports include: Access to a school counsellor or other appropriate mental health support. A trusted staff member the child can approach when feeling overwhelmed. A private place to talk when needed. Support with returning to school after an extended absence. Classroom accommodations through a Section 504 Plan, where appropriate. Help managing social difficulties or concerns about classmates understanding IBD. Children should not have to explain their entire medical history to their classmates to receive support. Families can work with the school to share only the information necessary to meet their child's needs. For more information about educational accommodations, read our guide to Understanding IBD and the US School System . 👨👩👧 Supporting Your Child at Home Parents and caregivers play an important role in helping children feel safe discussing their emotions. You do not need to have all the answers. Often, listening without judgement and showing that you take your child's concerns seriously can be a helpful first step. Consider these approaches: Keep conversations open. Ask how your child is feeling about school, friendships, treatment and everyday life. Give them opportunities to talk without feeling pressured. Acknowledge their feelings. Avoid dismissing worries simply because your child appears physically well. Their emotional experience is important, even when their symptoms are controlled. Encourage independence. Involve your child in decisions about their care and support them in developing age-appropriate ways to manage their condition. Make room for enjoyable activities. Encourage hobbies, friendships, sports and creative interests when appropriate for their health and energy levels. Respect their privacy. Let your child have a say in who knows about their diagnosis and how much information is shared, while ensuring responsible adults have the information needed to keep them safe. Watch for ongoing changes. If your child becomes increasingly withdrawn, persistently anxious or unusually sad, talk with their healthcare provider about whether additional support may help. It is also important for parents to look after their own emotional wellbeing. Caring for a child with a chronic illness can be demanding, and family support groups or counselling may help caregivers navigate their own concerns. 🌱 Building Confidence and Coping Skills Learning to live with IBD is a gradual process. Children and teenagers may need different kinds of support as they grow, become more independent and encounter new situations. Everyday strategies can help complement professional support. These might include establishing manageable routines, practising relaxation techniques, breaking overwhelming tasks into smaller steps and making flexible plans for activities. It can also help to remind children that they are more than their diagnosis. IBD is one part of their lives, but it does not define their personality, friendships, interests or future. Some days will be harder than others. Encouraging children to recognise their achievements, ask for help when needed and celebrate the things they enjoy can help them develop confidence over time. 📞 Where to Find Mental Health Support in the USA The following organisations and services can help families find information, support and professional assistance. Crohn's & Colitis Foundation Provides resources about mental and emotional wellbeing, support groups for children and teenagers, and information for parents and caregivers. Website: https://www.crohnscolitisfoundation.org/ Pediatric IBD Foundation Offers educational resources for children and families navigating paediatric Crohn's disease and ulcerative colitis. Website: https://pedsibd.org/ FindTreatment.gov A US government resource for finding mental health and substance use treatment services. Website: https://findtreatment.gov/ 988 Suicide & Crisis Lifeline If a child, teenager or family member is experiencing a mental health crisis or needs immediate emotional support, they can call or text 988 in the United States. Online chat is also available through 988lifeline.org . Support is available 24 hours a day, seven days a week. If someone is in immediate danger or experiencing a medical emergency, call 911. 💚 Final Thoughts Living with Crohn's disease or ulcerative colitis can bring emotional challenges that are not always visible to others. Children and teenagers may need help navigating anxiety, friendships, school pressures and the uncertainty that can accompany a chronic illness. Fortunately, families in the USA have options for finding support, from IBD-specific peer groups and school counselling to professional mental health care. You do not have to wait until your child is struggling to start the conversation. Asking questions, listening to their concerns and connecting with the right resources can help them feel understood and supported. Every child deserves to feel that their emotional wellbeing matters just as much as their physical health. Disclaimer: This article provides general educational information and is not a substitute for professional medical or mental health advice. Speak with your child's healthcare provider about individual concerns and appropriate treatment options. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like Understanding IBD and the US school system Read More Understanding IBD treatment costs and out-of-pocket expenses Understand the costs of managing Crohn’s disease or ulcerative colitis in the USA. Learn about specialist appointments, tests, hospital visits, medications, deductibles, copays and coinsurance, plus practical ways to manage medical bills and find financial assistance. Read More Understanding IBD Medication Learn how doctors in the USA choose IBD medications for children, including the factors that influence treatment decisions, different medication options, and how your child’s individual needs guide their care. Read More Mental health and emotional support Explore mental health and emotional support options for Australian children with Crohn’s disease or ulcerative colitis and their families. Learn how to find psychologists, access Medicare rebates, connect with free counselling services, and support your child’s emotional wellbeing at home and school. Read More Medication costs and prescriptions Understand medication costs for children with Crohn’s disease or ulcerative colitis in Australia. Learn about PBS prescription prices, concession cards, the PBS Safety Net, specialist treatments and practical ways to manage ongoing medication expenses. Read More School camps, excursions and sport Learn how Australian schools can help children with Crohn’s disease or ulcerative colitis participate in camps, excursions and sport. Discover practical tips for planning medication, ensuring toilet access, managing symptoms and working with teachers to keep activities safe and inclusive. Read More Medicare & healthcare costs Understand how Medicare works for children with IBD in Australia, including specialist rebates, public and private hospital costs, subsidised medications, Medicare Safety Nets, and ways to manage out-of-pocket healthcare expenses. Read More Australian IBD medications Learn about IBD medications in Australia, including mesalazine, steroids, azathioprine, biologics, the PBS, medication costs, prescriptions, hospital medicines and what parents need to know about managing Crohn’s disease and ulcerative colitis in children. Read More IBD camps, youth programs and activities Explore IBD camps, youth programs and activities in the USA for children and teenagers with Crohn’s disease or ulcerative colitis, including Camp Oasis, virtual camps, support groups and opportunities to make friends. Read More Understanding health insurance Learn how health insurance works in the USA for children with Crohn’s disease or ulcerative colitis. Explore employer-sponsored plans, private insurance, Medicaid and CHIP, and understand coverage, medication costs, deductibles and financial assistance. Read More IBD appointments, tests and monitoring Understand what to expect from IBD appointments, medical tests, and ongoing monitoring in the USA, including how to prepare, track results, and coordinate your child’s care. Read More Financial assistance for families Explore financial assistance available to Australian families caring for a child with Crohn’s disease or ulcerative colitis. Learn about carer payments, medication subsidies, Medicare Safety Nets, travel assistance, government benefits and support services that may help reduce the financial burden. Read More The National Public Toilet Map: finding toilets across Australia Discover how the free National Public Toilet Map can help families affected by Crohn’s disease or ulcerative colitis find public toilets across Australia. Learn how to search nearby facilities, check opening hours and accessibility, plan trips, and find toilets that require an MLAK key. Read More School attendance & catching up on learning Learn how to manage school absences caused by IBD flares, medical appointments and hospital stays. Discover practical ways to catch up on schoolwork, arrange flexible deadlines, support recovery and help your child return to the classroom with confidence. Read More Finding an IBD specialist in Australia Learn how to find a paediatric gastroenterologist in Australia, get a referral, understand public and private specialist care, and access the right support for your child living with Crohn’s disease or ulcerative colitis. Read More The Australian healthcare system Understand how the Australian healthcare system works for children with IBD, including Medicare, public and private healthcare, GP referrals, paediatric gastroenterologists, hospitals, medications, healthcare costs and finding IBD services across Australia Read More IBD organisations and support networks Discover IBD organisations, support groups, camps, and online communities in the USA that help children with Crohn’s disease or ulcerative colitis and their families find information, connect with others, and feel less alone. Read More Filling prescriptions and using pharmacies Learn how to fill your child’s IBD prescriptions in the USA, understand pharmacy labels, organise refills, use specialty pharmacies, and navigate insurance requirements to help avoid interruptions to treatment. Read More Understanding your child’s IBD care team Learn about the healthcare professionals involved in your child’s IBD care in the USA, what each person does, and how they work together to support your child’s health and wellbeing. Read More Accessing biologic treatments in Australia Learn how children with Crohn’s disease or ulcerative colitis can access biologic treatments in Australia. Understand specialist assessments, PBS approval requirements, hospital infusions, at-home injections, treatment costs and ongoing monitoring. Read More Camp Fearless: youth camps for young people with IBD Discover Camp Fearless, a youth camp run by Crohn’s & Colitis Australia for teenagers living with Crohn’s disease or ulcerative colitis. Find out what to expect, how young people can connect with others who understand life with IBD, and where to find information about upcoming camps. Read More School support plans & adjustments Learn how Australian schools can support students with Crohn’s disease or ulcerative colitis through individual support plans, toilet access, flexible deadlines, adjustments during flares, and help with absences. Includes guidance for working with your child’s school and a link to our free IBD School Support Plan download. Read More Australian IBD organisations Find Australian IBD organisations, support services and reliable information for children and families living with Crohn’s disease and ulcerative colitis. Discover ways to connect with other families, find IBD services and join the IBD Kids Facebook Group. Read More Getting insurance approval for IBD treatments Learn how insurance approval works for children’s Crohn’s disease and ulcerative colitis treatments in the USA. Understand prior authorisation, medication denials, appeals and practical steps families can take to help avoid delays in their child’s care. Read More When to seek medical help for your child’s IBD Learn how to recognise worsening IBD symptoms in your child, when to contact their healthcare team, and when to seek urgent or emergency medical care in the USA. Read More Finding a Pediatric IBD Specialist A guide to finding a pediatric IBD specialist in the USA, including where to look, what to ask, understanding referrals and insurance, and finding the right medical team for your child. Read More Medication safety and monitoring Learn how to keep your child safe while taking medication for Crohn’s disease or ulcerative colitis. Discover why regular blood tests matter, how to reduce infection risks, which vaccination precautions to know, why sun protection is important, and which side effects to watch for. Read More The MLAK key: easier access to toilets across Australia Learn how the MLAK key can help children with Crohn’s disease or ulcerative colitis access compatible locked public toilets across Australia. Find out how to apply, what it costs, where to use it, and how to make outings and family trips a little less stressful. Read More Hospital admissions & emergency care Learn what to expect if your child with Crohn’s disease or ulcerative colitis needs hospital care in Australia, including emergency care, hospital admissions, treatment, what to bring, discharge planning, and support for families. Read More IBD and Australian schools Learn how Australian schools can support students with IBD, including toilet access, absences, fatigue, medication, exams, schoolwork, sport, excursions and reasonable adjustments for Crohn’s disease and ulcerative colitis. Read More

Insurance USA Getting insurance approval for IBD treatments Learn how insurance approval works for children’s Crohn’s disease and ulcerative colitis treatments in the USA. Understand prior authorisation, medication denials, appeals and practical steps families can take to help avoid delays in their child’s care. When a child has Crohn’s disease or ulcerative colitis, getting the right treatment can sometimes involve more than a prescription or a doctor's recommendation. In the United States, health insurance companies may require approval before they will cover certain medications, procedures or treatments. This process can feel confusing, particularly when your child needs treatment promptly. Understanding how insurance approval works and what to do if a request is delayed or denied can help you navigate the process with your child's IBD team. 🩺 What is prior authorisation? Prior authorisation, sometimes called preauthorization or prior approval , is when your health insurance company reviews a proposed treatment before agreeing to cover it. The insurer may assess whether the treatment meets its coverage rules, whether it is considered medically necessary and whether certain requirements have been met. For children with IBD, prior authorisation may be required for: Biologic medications, including certain injectable or infusion treatments. Other specialist prescription medications. MRI scans, colonoscopies or other procedures. Hospital-based treatments or infusion services. Particular doses, quantities or treatment schedules. A doctor's prescription does not automatically mean insurance approval has been granted. Your child's healthcare team may need to submit additional information before treatment can proceed. 💊 Why might an IBD treatment need approval? IBD treatments can be complex, and insurers have different coverage rules. An insurer may request information to understand why a particular medication or procedure is appropriate for your child. For example, the insurer may ask the doctor to provide: Your child's diagnosis and relevant medical history. Details of symptoms, disease activity or test results. Previous treatments and how well they worked. Reasons another medication may not be suitable. The proposed dose, frequency and duration of treatment. Clinical evidence supporting the requested treatment. Some plans require patients to try a preferred medication before covering another option. This is often called step therapy . Your child's gastroenterologist may be able to request an exception if the preferred treatment is unsuitable, has not worked or could cause harmful side effects. 📋 How does the approval process work? Although the details vary between insurers, the process commonly follows these steps. 1. The IBD team recommends treatment Your child's paediatric gastroenterologist determines which treatment is appropriate based on their medical needs. 2. The insurance requirements are checked The healthcare team or family contacts the insurer to confirm whether prior authorisation is needed and which criteria apply. 3. Medical information is submitted The doctor's office sends the insurer the required clinical information, forms and supporting documentation. 4. The insurer reviews the request The insurer decides whether to approve the treatment, request more information or deny the request. The timeframe depends on the type of request, the plan and whether an urgent review is appropriate. 5. The family receives an update If the treatment is approved, confirm the approval details and any conditions before proceeding. If it is denied or delayed, ask what is needed next and contact the IBD team. ⏳ What if approval is delayed? Waiting for approval can be stressful when your child is experiencing symptoms or is due for their next treatment. If you have not received an update: Contact the insurer and ask whether the request has been received. Check whether any forms or medical records are missing. Ask whether the request is marked as urgent, if clinically appropriate. Contact your child's gastroenterologist to let them know about the delay. Ask the insurer for the expected decision timeframe and a reference number. If your child is due for a medication dose or infusion, contact their IBD team promptly for advice about what to do while approval is pending. Do not stop, delay or change prescribed treatment without medical guidance. If your child is becoming seriously unwell, seek urgent medical care rather than waiting for an insurance decision. ❌ What if insurance denies the treatment? A denial does not always mean the process is over. The insurer should provide an explanation of its decision and information about how to challenge it. Common reasons for denial include missing documentation, failure to meet the plan's coverage criteria, a requirement to try another treatment first or a determination that the requested service is not covered. If a request is denied, consider these steps: 1. Ask for the reason in writing Request the denial letter and check the specific reason, any policy requirements and the deadline for appealing. 2. Speak with your child's gastroenterologist The doctor may be able to clarify the medical need, provide missing records or explain why an alternative treatment is unsuitable. 3. Request an internal appeal An internal appeal asks the insurance company to reconsider its decision. Your child's doctor can often provide a supporting letter explaining the diagnosis, previous treatments and reasons the requested treatment is medically appropriate. 4. Ask about an expedited review If waiting for the standard process could seriously jeopardise your child's health, ask the treating doctor and insurer whether an expedited appeal is appropriate. 5. Explore an external review For eligible denials, you may be able to request an independent review by someone outside the insurance company. The denial notice should explain how to request a review and the applicable deadline. Learn more from HealthCare.gov 's guide to appealing insurance decisions . 💙 What about prescription medication denials? Prescription coverage can involve a separate process from approval for hospital or infusion services. Your insurer may require a medication to be listed on its formulary, prescribed by a particular specialist or obtained through a designated pharmacy. If a prescribed medicine is not covered, your doctor may be able to request a formulary exception. This request can include evidence that covered alternatives have not worked, have caused side effects or are not appropriate for your child. Ask the insurer whether an exception is available, what supporting information is required and whether any temporary supply or other option is available while the request is reviewed. Do not assume that a different medication is an appropriate substitute. Treatment changes should be discussed with your child's gastroenterologist. 💡 Practical tips for families Keeping a clear record of insurance communications can make the process easier to manage. Keep copies of approval letters, denial notices and submitted forms. Write down the date of each call, the representative's name and any reference number. Ask whether approval applies to a specific medication, dose, provider or period. Check whether a new approval is required when your insurance plan changes. Confirm that the pharmacy, hospital or infusion centre has the approval before treatment. Contact the insurer before an existing approval expires, especially for ongoing biologic treatment. Your hospital's social worker, financial counsellor or insurance support team may also be able to help with paperwork and appeals. 💙 Where can you find help? These official resources explain insurance approval and appeal rights in the United States: HealthCare.gov — appealing an insurance decision explains internal appeals and external review. HealthCare.gov — prescription medications explains formularies, medication exceptions and pharmacy networks. Centers for Medicare & Medicaid Services provides information about appealing health plan decisions. The process and protections can differ depending on your insurance plan, including whether it is an employer-sponsored plan, a Marketplace policy or public coverage. Always check the instructions and deadlines in your own plan documents. 💙 A final note Insurance approval can add another layer of complexity to caring for a child with IBD, but families have options when a request is delayed or denied. Working closely with your child's gastroenterologist, keeping clear records and understanding your appeal rights can help you advocate for the care your child needs. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like Understanding IBD treatment costs and out-of-pocket expenses Understand the costs of managing Crohn’s disease or ulcerative colitis in the USA. Learn about specialist appointments, tests, hospital visits, medications, deductibles, copays and coinsurance, plus practical ways to manage medical bills and find financial assistance. Read More Understanding IBD Medication Learn how doctors in the USA choose IBD medications for children, including the factors that influence treatment decisions, different medication options, and how your child’s individual needs guide their care. Read More Mental health and emotional support Explore mental health and emotional support options for Australian children with Crohn’s disease or ulcerative colitis and their families. Learn how to find psychologists, access Medicare rebates, connect with free counselling services, and support your child’s emotional wellbeing at home and school. Read More Medication costs and prescriptions Understand medication costs for children with Crohn’s disease or ulcerative colitis in Australia. Learn about PBS prescription prices, concession cards, the PBS Safety Net, specialist treatments and practical ways to manage ongoing medication expenses. Read More School camps, excursions and sport Learn how Australian schools can help children with Crohn’s disease or ulcerative colitis participate in camps, excursions and sport. Discover practical tips for planning medication, ensuring toilet access, managing symptoms and working with teachers to keep activities safe and inclusive. Read More Medicare & healthcare costs Understand how Medicare works for children with IBD in Australia, including specialist rebates, public and private hospital costs, subsidised medications, Medicare Safety Nets, and ways to manage out-of-pocket healthcare expenses. Read More Australian IBD medications Learn about IBD medications in Australia, including mesalazine, steroids, azathioprine, biologics, the PBS, medication costs, prescriptions, hospital medicines and what parents need to know about managing Crohn’s disease and ulcerative colitis in children. Read More Understanding health insurance Learn how health insurance works in the USA for children with Crohn’s disease or ulcerative colitis. Explore employer-sponsored plans, private insurance, Medicaid and CHIP, and understand coverage, medication costs, deductibles and financial assistance. Read More IBD appointments, tests and monitoring Understand what to expect from IBD appointments, medical tests, and ongoing monitoring in the USA, including how to prepare, track results, and coordinate your child’s care. Read More Financial assistance for families Explore financial assistance available to Australian families caring for a child with Crohn’s disease or ulcerative colitis. Learn about carer payments, medication subsidies, Medicare Safety Nets, travel assistance, government benefits and support services that may help reduce the financial burden. Read More The National Public Toilet Map: finding toilets across Australia Discover how the free National Public Toilet Map can help families affected by Crohn’s disease or ulcerative colitis find public toilets across Australia. Learn how to search nearby facilities, check opening hours and accessibility, plan trips, and find toilets that require an MLAK key. Read More School attendance & catching up on learning Learn how to manage school absences caused by IBD flares, medical appointments and hospital stays. Discover practical ways to catch up on schoolwork, arrange flexible deadlines, support recovery and help your child return to the classroom with confidence. Read More Finding an IBD specialist in Australia Learn how to find a paediatric gastroenterologist in Australia, get a referral, understand public and private specialist care, and access the right support for your child living with Crohn’s disease or ulcerative colitis. Read More The Australian healthcare system Understand how the Australian healthcare system works for children with IBD, including Medicare, public and private healthcare, GP referrals, paediatric gastroenterologists, hospitals, medications, healthcare costs and finding IBD services across Australia Read More Filling prescriptions and using pharmacies Learn how to fill your child’s IBD prescriptions in the USA, understand pharmacy labels, organise refills, use specialty pharmacies, and navigate insurance requirements to help avoid interruptions to treatment. Read More Understanding your child’s IBD care team Learn about the healthcare professionals involved in your child’s IBD care in the USA, what each person does, and how they work together to support your child’s health and wellbeing. Read More Accessing biologic treatments in Australia Learn how children with Crohn’s disease or ulcerative colitis can access biologic treatments in Australia. Understand specialist assessments, PBS approval requirements, hospital infusions, at-home injections, treatment costs and ongoing monitoring. Read More Camp Fearless: youth camps for young people with IBD Discover Camp Fearless, a youth camp run by Crohn’s & Colitis Australia for teenagers living with Crohn’s disease or ulcerative colitis. Find out what to expect, how young people can connect with others who understand life with IBD, and where to find information about upcoming camps. Read More School support plans & adjustments Learn how Australian schools can support students with Crohn’s disease or ulcerative colitis through individual support plans, toilet access, flexible deadlines, adjustments during flares, and help with absences. Includes guidance for working with your child’s school and a link to our free IBD School Support Plan download. Read More Australian IBD organisations Find Australian IBD organisations, support services and reliable information for children and families living with Crohn’s disease and ulcerative colitis. Discover ways to connect with other families, find IBD services and join the IBD Kids Facebook Group. Read More When to seek medical help for your child’s IBD Learn how to recognise worsening IBD symptoms in your child, when to contact their healthcare team, and when to seek urgent or emergency medical care in the USA. Read More Finding a Pediatric IBD Specialist A guide to finding a pediatric IBD specialist in the USA, including where to look, what to ask, understanding referrals and insurance, and finding the right medical team for your child. Read More Medication safety and monitoring Learn how to keep your child safe while taking medication for Crohn’s disease or ulcerative colitis. Discover why regular blood tests matter, how to reduce infection risks, which vaccination precautions to know, why sun protection is important, and which side effects to watch for. Read More The MLAK key: easier access to toilets across Australia Learn how the MLAK key can help children with Crohn’s disease or ulcerative colitis access compatible locked public toilets across Australia. Find out how to apply, what it costs, where to use it, and how to make outings and family trips a little less stressful. Read More Hospital admissions & emergency care Learn what to expect if your child with Crohn’s disease or ulcerative colitis needs hospital care in Australia, including emergency care, hospital admissions, treatment, what to bring, discharge planning, and support for families. Read More IBD and Australian schools Learn how Australian schools can support students with IBD, including toilet access, absences, fatigue, medication, exams, schoolwork, sport, excursions and reasonable adjustments for Crohn’s disease and ulcerative colitis. Read More

Insurance USA Understanding IBD treatment costs and out-of-pocket expenses Understand the costs of managing Crohn’s disease or ulcerative colitis in the USA. Learn about specialist appointments, tests, hospital visits, medications, deductibles, copays and coinsurance, plus practical ways to manage medical bills and find financial assistance. When a child has Crohn’s disease or ulcerative colitis, the cost of treatment in the United States can vary considerably. Even with health insurance, families may need to pay for specialist appointments, blood tests, colonoscopies, hospital visits and prescription medications. Understanding how insurance costs work can help you prepare for medical bills, compare coverage options and find ways to manage the financial side of your child’s care. 🩺 What are out-of-pocket expenses? Out-of-pocket expenses are the costs your family pays yourself rather than the amount covered by your health insurance. These expenses depend on your insurance plan, the treatment your child needs and whether you use in-network providers. Common costs include: Monthly insurance premiums. Deductibles, copayments and coinsurance. Prescription medication costs. Specialist appointments and diagnostic tests. Hospital and outpatient treatment fees. Services or treatments that your insurance does not cover. Your insurance may cover a large part of your child’s treatment, but it is important to understand what you will be expected to pay. 💵 Understanding deductibles, copays and coinsurance Health insurance plans use different ways to share healthcare costs between the insurer and your family. Deductible Your deductible is the amount you must pay for certain covered healthcare services before your insurance starts paying its share. Some services may be covered before you meet your deductible, depending on your plan. For example, if your deductible is $1,500, you may need to pay the first $1,500 of eligible healthcare costs before your plan begins contributing to services subject to that deductible. Copayment (copay) A copay is a fixed amount you pay for a covered service. Your plan might charge one amount for a specialist appointment and another for a prescription. For example, you might pay a $40 copay for a specialist visit, depending on your coverage. Coinsurance Coinsurance is a percentage of the cost you pay for a covered service, usually after meeting your deductible. For example, if your plan requires 20% coinsurance on an eligible $500 service, your share would be $100 and the insurer's share would be $400, assuming the deductible has been met and no other plan rules apply. Out-of-pocket maximum This is the maximum amount you pay during a plan year for covered services that count towards the limit. Once you reach it, your plan generally pays 100% of covered, in-network essential health benefits for the rest of that plan year. Monthly premiums, services your plan does not cover and certain out-of-network costs generally do not count towards this maximum. You can find more explanations at HealthCare.gov ’s health insurance glossary . 🧪 Costs of specialist appointments and tests Children with IBD often need regular appointments with a paediatric gastroenterologist and other healthcare professionals. They may also require ongoing monitoring to assess inflammation, growth, nutrition and treatment response. Depending on your child's care plan, expenses may include: Specialist consultations. Blood tests and stool tests. Imaging, such as MRI scans or ultrasound. Colonoscopies and endoscopies. Anaesthesia and facility fees associated with procedures. Nutrition or mental health appointments. These services may be billed separately, even when they occur on the same day. For example, a colonoscopy could involve charges from the hospital or procedure facility, the gastroenterologist and the anaesthesia provider. Before planned procedures, ask the insurer which providers and facilities are in-network and whether prior authorisation is required. You can also ask the hospital for an estimate of your expected costs. 💊 Prescription medication costs Medication expenses can be an important part of managing childhood IBD. The amount a family pays depends on the medicine prescribed, the insurance plan's prescription benefits and whether the medication is covered under the pharmacy benefit or medical benefit. Costs may include: Oral medications, such as mesalamine. Immunomodulators and other prescription treatments. Biologic medications. Injection supplies or administration fees, where applicable. Infusion appointments and facility charges. Prescription deductibles, copays or coinsurance. Some biologic treatments are administered in an infusion centre or hospital, while others may be prescribed for use at home. The insurance arrangements and billing process can differ. Before starting or changing medication, ask your insurer and IBD team to confirm whether the treatment is covered, whether prior authorisation is needed and what your estimated share of the cost will be. If a medication is expensive, ask the prescribing team whether the manufacturer offers a patient assistance programme or copay support. Eligibility varies, and some programmes have restrictions based on insurance type. Assistance programmes do not replace checking your insurance benefits. 🏥 Hospital visits and emergency care A hospital visit can involve several charges, including emergency department services, laboratory tests, imaging, medication, specialist consultations and an inpatient stay. For planned hospital care, check whether the hospital and relevant providers are in-network and whether your plan requires approval in advance. Emergency care is different. Federal protections under the No Surprises Act limit many unexpected out-of-network bills for emergency services covered by private health insurance. However, not every service or type of bill is covered by these protections, so review any unexpected charge carefully. Do not delay urgent medical care because you are worried about the cost. If your child appears seriously unwell, seek appropriate medical help. For more information, visit the Centers for Medicare & Medicaid Services guide to medical bill rights . 📋 How to plan for treatment costs A few practical steps can help you understand and manage your family's expenses. 1. Review your insurance benefits Keep a copy of your plan's summary of benefits and coverage. Check your deductible, copays, coinsurance, out-of-pocket maximum and prescription drug rules. 2. Confirm coverage before planned treatment Contact your insurer before expensive procedures, infusions or medication changes. Ask whether the service is covered, whether prior authorisation is required and which providers you can use. 3. Keep track of bills and payments Save bills, receipts, insurance statements and explanations of benefits (EOBs). An EOB explains how the insurer processed a claim; it is not necessarily a bill you need to pay. Compare the EOB with the provider's bill and ask questions if the amounts do not match. 4. Ask about payment plans If you receive a bill you cannot afford, contact the hospital or provider's billing department. Ask whether they offer payment plans, financial assistance or charity care. Eligibility and available support vary. 5. Check public coverage options Depending on your family's circumstances and state, your child may qualify for Medicaid or the Children's Health Insurance Program (CHIP). These programmes provide free or low-cost coverage to eligible children, with rules and costs that vary by state. You can explore eligibility through HealthCare.gov 's Medicaid and CHIP information . 💙 Where can families find help? If treatment costs become difficult to manage, you do not have to navigate the system alone. Your child's hospital social worker, financial counsellor or IBD care team may be able to help you understand bills, find assistance programmes or contact your insurer. Useful starting points include: HealthCare.gov — compare insurance plans and learn about deductibles and out-of-pocket expenses. Medicaid.gov — learn about Medicaid and CHIP. Your insurance company's member services team — confirm coverage and ask about disputed claims. Your hospital's billing or financial assistance department — ask about payment plans and help with medical bills. 💙 A final note There is no single cost for treating childhood IBD in the United States. Expenses depend on your child's treatment needs, your insurance coverage and the providers you use. Understanding your plan, asking questions before planned care and exploring available financial assistance can help you prepare for costs while keeping your child's health and wellbeing at the centre of their care. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like Getting insurance approval for IBD treatments Learn how insurance approval works for children’s Crohn’s disease and ulcerative colitis treatments in the USA. Understand prior authorisation, medication denials, appeals and practical steps families can take to help avoid delays in their child’s care. Read More Understanding IBD Medication Learn how doctors in the USA choose IBD medications for children, including the factors that influence treatment decisions, different medication options, and how your child’s individual needs guide their care. Read More Mental health and emotional support Explore mental health and emotional support options for Australian children with Crohn’s disease or ulcerative colitis and their families. Learn how to find psychologists, access Medicare rebates, connect with free counselling services, and support your child’s emotional wellbeing at home and school. Read More Medication costs and prescriptions Understand medication costs for children with Crohn’s disease or ulcerative colitis in Australia. Learn about PBS prescription prices, concession cards, the PBS Safety Net, specialist treatments and practical ways to manage ongoing medication expenses. Read More School camps, excursions and sport Learn how Australian schools can help children with Crohn’s disease or ulcerative colitis participate in camps, excursions and sport. Discover practical tips for planning medication, ensuring toilet access, managing symptoms and working with teachers to keep activities safe and inclusive. Read More Medicare & healthcare costs Understand how Medicare works for children with IBD in Australia, including specialist rebates, public and private hospital costs, subsidised medications, Medicare Safety Nets, and ways to manage out-of-pocket healthcare expenses. Read More Australian IBD medications Learn about IBD medications in Australia, including mesalazine, steroids, azathioprine, biologics, the PBS, medication costs, prescriptions, hospital medicines and what parents need to know about managing Crohn’s disease and ulcerative colitis in children. Read More Understanding health insurance Learn how health insurance works in the USA for children with Crohn’s disease or ulcerative colitis. Explore employer-sponsored plans, private insurance, Medicaid and CHIP, and understand coverage, medication costs, deductibles and financial assistance. Read More IBD appointments, tests and monitoring Understand what to expect from IBD appointments, medical tests, and ongoing monitoring in the USA, including how to prepare, track results, and coordinate your child’s care. Read More Financial assistance for families Explore financial assistance available to Australian families caring for a child with Crohn’s disease or ulcerative colitis. Learn about carer payments, medication subsidies, Medicare Safety Nets, travel assistance, government benefits and support services that may help reduce the financial burden. Read More The National Public Toilet Map: finding toilets across Australia Discover how the free National Public Toilet Map can help families affected by Crohn’s disease or ulcerative colitis find public toilets across Australia. Learn how to search nearby facilities, check opening hours and accessibility, plan trips, and find toilets that require an MLAK key. Read More School attendance & catching up on learning Learn how to manage school absences caused by IBD flares, medical appointments and hospital stays. Discover practical ways to catch up on schoolwork, arrange flexible deadlines, support recovery and help your child return to the classroom with confidence. Read More Finding an IBD specialist in Australia Learn how to find a paediatric gastroenterologist in Australia, get a referral, understand public and private specialist care, and access the right support for your child living with Crohn’s disease or ulcerative colitis. Read More The Australian healthcare system Understand how the Australian healthcare system works for children with IBD, including Medicare, public and private healthcare, GP referrals, paediatric gastroenterologists, hospitals, medications, healthcare costs and finding IBD services across Australia Read More Filling prescriptions and using pharmacies Learn how to fill your child’s IBD prescriptions in the USA, understand pharmacy labels, organise refills, use specialty pharmacies, and navigate insurance requirements to help avoid interruptions to treatment. Read More Understanding your child’s IBD care team Learn about the healthcare professionals involved in your child’s IBD care in the USA, what each person does, and how they work together to support your child’s health and wellbeing. Read More Accessing biologic treatments in Australia Learn how children with Crohn’s disease or ulcerative colitis can access biologic treatments in Australia. Understand specialist assessments, PBS approval requirements, hospital infusions, at-home injections, treatment costs and ongoing monitoring. Read More Camp Fearless: youth camps for young people with IBD Discover Camp Fearless, a youth camp run by Crohn’s & Colitis Australia for teenagers living with Crohn’s disease or ulcerative colitis. Find out what to expect, how young people can connect with others who understand life with IBD, and where to find information about upcoming camps. Read More School support plans & adjustments Learn how Australian schools can support students with Crohn’s disease or ulcerative colitis through individual support plans, toilet access, flexible deadlines, adjustments during flares, and help with absences. Includes guidance for working with your child’s school and a link to our free IBD School Support Plan download. Read More Australian IBD organisations Find Australian IBD organisations, support services and reliable information for children and families living with Crohn’s disease and ulcerative colitis. Discover ways to connect with other families, find IBD services and join the IBD Kids Facebook Group. Read More When to seek medical help for your child’s IBD Learn how to recognise worsening IBD symptoms in your child, when to contact their healthcare team, and when to seek urgent or emergency medical care in the USA. Read More Finding a Pediatric IBD Specialist A guide to finding a pediatric IBD specialist in the USA, including where to look, what to ask, understanding referrals and insurance, and finding the right medical team for your child. Read More Medication safety and monitoring Learn how to keep your child safe while taking medication for Crohn’s disease or ulcerative colitis. Discover why regular blood tests matter, how to reduce infection risks, which vaccination precautions to know, why sun protection is important, and which side effects to watch for. Read More The MLAK key: easier access to toilets across Australia Learn how the MLAK key can help children with Crohn’s disease or ulcerative colitis access compatible locked public toilets across Australia. Find out how to apply, what it costs, where to use it, and how to make outings and family trips a little less stressful. Read More Hospital admissions & emergency care Learn what to expect if your child with Crohn’s disease or ulcerative colitis needs hospital care in Australia, including emergency care, hospital admissions, treatment, what to bring, discharge planning, and support for families. Read More IBD and Australian schools Learn how Australian schools can support students with IBD, including toilet access, absences, fatigue, medication, exams, schoolwork, sport, excursions and reasonable adjustments for Crohn’s disease and ulcerative colitis. Read More

Insurance USA Understanding health insurance Learn how health insurance works in the USA for children with Crohn’s disease or ulcerative colitis. Explore employer-sponsored plans, private insurance, Medicaid and CHIP, and understand coverage, medication costs, deductibles and financial assistance. Health insurance can be confusing for any family, but when a child has Crohn’s disease or ulcerative colitis, understanding your coverage is especially important. Regular specialist appointments, blood tests, colonoscopies, hospital care and ongoing medication can all create significant expenses. In the United States, families may receive health insurance through an employer, purchase a private plan or qualify for a public program such as Medicaid or the Children’s Health Insurance Program (CHIP). Understanding how these options work can help you find coverage for your child’s needs and plan for the costs of ongoing IBD care. 🩺 How does health insurance work in the USA? Health insurance helps pay for medical care, but it does not always cover every expense. Depending on your plan, you may pay a monthly premium as well as additional costs when your child receives treatment. Here are some common insurance terms to understand: Premium: The amount you pay each month to keep your insurance active. Deductible: The amount you may need to pay for covered services before your plan starts paying for certain costs. Copayment (copay): A fixed amount you pay for a particular service, such as a doctor’s appointment or prescription. Coinsurance: The percentage of a covered medical bill you pay after meeting your deductible. Out-of-pocket maximum: The annual limit on what you pay for covered, in-network essential health benefits under most qualifying plans. Premiums and some other expenses do not count towards this limit. For a child with IBD, these costs can add up across appointments, laboratory tests, procedures and medications. A plan with a lower monthly premium may have higher costs when care is needed, so it is important to look at the overall cost rather than the premium alone. 🏢 Employer-sponsored health insurance Many American families receive health insurance through a parent’s job. The employer typically offers one or more plans and may pay part of the monthly premium, while the employee pays the remainder. Employer-sponsored plans can cover a range of services, including specialist appointments, hospital treatment, laboratory tests and prescription medications. However, the exact benefits depend on the plan. If your child has Crohn’s disease or ulcerative colitis, check whether: Your child’s paediatric gastroenterologist and preferred hospital are in the plan’s network. The plan covers the blood tests, imaging and endoscopic procedures your child needs. Prescribed IBD medications are included on the plan’s drug list, known as its formulary. Biologic treatments require prior authorisation or special approval. Infusion treatments are covered when given in a hospital, infusion centre or another approved setting. There are separate deductibles or limits for prescriptions and specialist care. What if a parent changes jobs? Losing employer-sponsored coverage may create an opportunity to enrol in another plan, including through the Health Insurance Marketplace. Special enrolment rules and deadlines can apply, so check your options promptly. 🏥 Private health insurance Families can also purchase individual or family health insurance directly from an insurer or through the federal or state Health Insurance Marketplace. The Marketplace allows eligible people to compare plans and check whether they qualify for financial assistance based on their circumstances. Under the Affordable Care Act, Marketplace plans cannot refuse to cover your child or charge more because your child has a pre-existing condition such as Crohn’s disease or ulcerative colitis. Medicaid and CHIP also cannot deny eligible children coverage or charge them more because of a pre-existing condition. When comparing private plans, look beyond the monthly premium. Check the provider network, prescription coverage, deductible, coinsurance and out-of-pocket maximum. These details can make a substantial difference for a child who needs regular specialist care or expensive medication. You can start exploring options at HealthCare.gov . 💙 Medicaid: health coverage for eligible families Medicaid is a public health insurance program funded by federal and state governments. It provides free or low-cost health coverage to eligible people, including children and families with lower incomes. Each state runs its own Medicaid program within federal guidelines. Eligibility rules, income limits, benefits and costs can therefore vary depending on where your family lives. For children with IBD, Medicaid may help cover services such as: Doctor and specialist appointments. Hospital stays and outpatient care. Blood tests and other diagnostic investigations. Prescription medications. Other medically necessary services included in the state programme. If your child needs ongoing treatment, ask your state Medicaid agency which paediatric gastroenterologists, hospitals, pharmacies and infusion providers accept your coverage. Families can apply for Medicaid throughout the year. You do not have to wait for the annual Marketplace open-enrolment period to apply. Find information and application options through Medicaid and CHIP at HealthCare.gov . 🧒 CHIP: health insurance for children The Children’s Health Insurance Program (CHIP) provides health coverage for eligible children in families whose income is too high to qualify for Medicaid but who may struggle to afford private insurance. CHIP is administered by individual states, so eligibility requirements, premiums and covered services differ across the country. Depending on the state and programme, families may pay no premium or a relatively low premium, along with limited costs for certain services. CHIP benefits generally include doctor visits, hospital care, laboratory services, prescriptions and behavioural health services. This can be important for children who need regular monitoring and treatment for IBD. Eligibility is not the same everywhere. If your child does not qualify for Medicaid, it is still worth checking whether CHIP is an option. You can apply for Medicaid or CHIP at any time of year. Visit HealthCare.gov ’s CHIP information page to learn more and find out how to apply. 💊 What health insurance should cover for a child with IBD The details vary between plans, but families should investigate coverage for the full range of care their child may need. This may include: Specialist care: Paediatric gastroenterologists and other members of the IBD team. Monitoring: Blood tests, stool tests and other investigations recommended by the treating team. Procedures: Colonoscopies, endoscopies, imaging and associated hospital or facility fees. Medication: Prescription drugs, including mesalamine, immunomodulators, corticosteroids and biologic medicines when prescribed. Infusions and injections: The medication itself, administration fees and the facility where treatment is given. Hospital care: Emergency treatment, inpatient stays and surgery when medically necessary. Mental health support: Psychology or counselling services covered by the plan. A medication appearing on a plan’s formulary does not automatically mean it will be covered in every situation. Some treatments require prior authorisation, step therapy, a specific pharmacy or approval from the insurer before treatment begins. Ask the IBD team and insurer to confirm coverage before starting a new treatment whenever possible. If a medication is denied, ask for the reason in writing and whether your doctor can submit further clinical information or appeal the decision. 📋 Questions to ask before choosing a plan When comparing insurance options, it can help to keep a checklist. Is our child’s current gastroenterologist in-network? Which hospitals and infusion centres can we use? Are our child’s current medications covered? What will we pay for prescriptions and biologic treatments? Do tests, procedures or hospital visits require prior authorisation? What is the deductible, and how much is the out-of-pocket maximum? Are there restrictions on which pharmacies we can use? What happens if our child needs emergency care while travelling? What happens to our coverage if our employment or income changes? Keep copies of your insurance card, plan documents, medication list, authorisation letters and bills. These records can make it easier to resolve questions about claims and treatment approvals. 💙 Where can families get help? Understanding insurance does not have to be something you manage alone. Your child’s IBD nurse, hospital social worker or financial counsellor may be able to explain coverage requirements, identify assistance programmes and help with insurance paperwork. For official information and support, start with: HealthCare.gov — compare Marketplace plans and explore coverage options. Medicaid.gov — learn about Medicaid and CHIP programmes. Your state Medicaid or CHIP agency — check eligibility, benefits and how to apply. Your insurer’s member services team — confirm provider networks, medication coverage and prior authorisation requirements. 💙 A final note Every family’s situation is different, and the right insurance option depends on your state, household circumstances and your child’s medical needs. Before enrolling, confirm the details directly with the insurer or relevant government programme. With a clearer understanding of your options, you can make more informed decisions about your child’s coverage and help them access the care they need to live well with IBD. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like Filling prescriptions and using pharmacies Learn how to fill your child’s IBD prescriptions in the USA, understand pharmacy labels, organise refills, use specialty pharmacies, and navigate insurance requirements to help avoid interruptions to treatment. Read More Understanding your child’s IBD care team Learn about the healthcare professionals involved in your child’s IBD care in the USA, what each person does, and how they work together to support your child’s health and wellbeing. Read More Accessing biologic treatments in Australia Learn how children with Crohn’s disease or ulcerative colitis can access biologic treatments in Australia. Understand specialist assessments, PBS approval requirements, hospital infusions, at-home injections, treatment costs and ongoing monitoring. Read More Camp Fearless: youth camps for young people with IBD Discover Camp Fearless, a youth camp run by Crohn’s & Colitis Australia for teenagers living with Crohn’s disease or ulcerative colitis. Find out what to expect, how young people can connect with others who understand life with IBD, and where to find information about upcoming camps. Read More School support plans & adjustments Learn how Australian schools can support students with Crohn’s disease or ulcerative colitis through individual support plans, toilet access, flexible deadlines, adjustments during flares, and help with absences. Includes guidance for working with your child’s school and a link to our free IBD School Support Plan download. Read More Australian IBD organisations Find Australian IBD organisations, support services and reliable information for children and families living with Crohn’s disease and ulcerative colitis. Discover ways to connect with other families, find IBD services and join the IBD Kids Facebook Group. Read More When to seek medical help for your child’s IBD Learn how to recognise worsening IBD symptoms in your child, when to contact their healthcare team, and when to seek urgent or emergency medical care in the USA. Read More Finding a Pediatric IBD Specialist A guide to finding a pediatric IBD specialist in the USA, including where to look, what to ask, understanding referrals and insurance, and finding the right medical team for your child. Read More Medication safety and monitoring Learn how to keep your child safe while taking medication for Crohn’s disease or ulcerative colitis. Discover why regular blood tests matter, how to reduce infection risks, which vaccination precautions to know, why sun protection is important, and which side effects to watch for. Read More The MLAK key: easier access to toilets across Australia Learn how the MLAK key can help children with Crohn’s disease or ulcerative colitis access compatible locked public toilets across Australia. Find out how to apply, what it costs, where to use it, and how to make outings and family trips a little less stressful. Read More Hospital admissions & emergency care Learn what to expect if your child with Crohn’s disease or ulcerative colitis needs hospital care in Australia, including emergency care, hospital admissions, treatment, what to bring, discharge planning, and support for families. Read More IBD and Australian schools Learn how Australian schools can support students with IBD, including toilet access, absences, fatigue, medication, exams, schoolwork, sport, excursions and reasonable adjustments for Crohn’s disease and ulcerative colitis. Read More Understanding IBD Medication Learn how doctors in the USA choose IBD medications for children, including the factors that influence treatment decisions, different medication options, and how your child’s individual needs guide their care. Read More Mental health and emotional support Explore mental health and emotional support options for Australian children with Crohn’s disease or ulcerative colitis and their families. Learn how to find psychologists, access Medicare rebates, connect with free counselling services, and support your child’s emotional wellbeing at home and school. Read More Medication costs and prescriptions Understand medication costs for children with Crohn’s disease or ulcerative colitis in Australia. Learn about PBS prescription prices, concession cards, the PBS Safety Net, specialist treatments and practical ways to manage ongoing medication expenses. Read More School camps, excursions and sport Learn how Australian schools can help children with Crohn’s disease or ulcerative colitis participate in camps, excursions and sport. Discover practical tips for planning medication, ensuring toilet access, managing symptoms and working with teachers to keep activities safe and inclusive. Read More Medicare & healthcare costs Understand how Medicare works for children with IBD in Australia, including specialist rebates, public and private hospital costs, subsidised medications, Medicare Safety Nets, and ways to manage out-of-pocket healthcare expenses. Read More Australian IBD medications Learn about IBD medications in Australia, including mesalazine, steroids, azathioprine, biologics, the PBS, medication costs, prescriptions, hospital medicines and what parents need to know about managing Crohn’s disease and ulcerative colitis in children. Read More IBD appointments, tests and monitoring Understand what to expect from IBD appointments, medical tests, and ongoing monitoring in the USA, including how to prepare, track results, and coordinate your child’s care. Read More Financial assistance for families Explore financial assistance available to Australian families caring for a child with Crohn’s disease or ulcerative colitis. Learn about carer payments, medication subsidies, Medicare Safety Nets, travel assistance, government benefits and support services that may help reduce the financial burden. Read More The National Public Toilet Map: finding toilets across Australia Discover how the free National Public Toilet Map can help families affected by Crohn’s disease or ulcerative colitis find public toilets across Australia. Learn how to search nearby facilities, check opening hours and accessibility, plan trips, and find toilets that require an MLAK key. Read More School attendance & catching up on learning Learn how to manage school absences caused by IBD flares, medical appointments and hospital stays. Discover practical ways to catch up on schoolwork, arrange flexible deadlines, support recovery and help your child return to the classroom with confidence. Read More Finding an IBD specialist in Australia Learn how to find a paediatric gastroenterologist in Australia, get a referral, understand public and private specialist care, and access the right support for your child living with Crohn’s disease or ulcerative colitis. Read More The Australian healthcare system Understand how the Australian healthcare system works for children with IBD, including Medicare, public and private healthcare, GP referrals, paediatric gastroenterologists, hospitals, medications, healthcare costs and finding IBD services across Australia Read More

Medications USA Filling prescriptions and using pharmacies Learn how to fill your child’s IBD prescriptions in the USA, understand pharmacy labels, organise refills, use specialty pharmacies, and navigate insurance requirements to help avoid interruptions to treatment. When your child has Crohn’s disease or ulcerative colitis, managing prescriptions can become an important part of everyday life. In the USA, families may collect medications from a local pharmacy, receive them by mail, or use a specialty pharmacy for certain treatments. Understanding how prescriptions work, how to read pharmacy labels, and when to arrange refills can help you avoid interruptions to your child’s treatment. 🏥 Where can you fill your child’s prescriptions? In the USA, there are several ways to obtain prescribed IBD medications. Local retail pharmacies Many everyday medications can be collected from a local pharmacy, including some oral medications used to treat IBD. Pharmacies may be located in supermarkets, drugstores, or independent community businesses. Mail-order pharmacies Some insurance plans offer mail-order services that deliver eligible medications directly to your home. This can be convenient for medicines taken regularly, particularly when your insurance plan allows longer supplies. Specialty pharmacies Certain biologics and other complex medications may need to be obtained through a specialty pharmacy. These pharmacies manage medicines that may require refrigeration, special handling, insurance authorisation, or additional support. Your child’s healthcare team or insurance provider can tell you which pharmacy you need to use. 📝 How do prescriptions work? Your child’s doctor sends a prescription to a pharmacy electronically, by phone where permitted, or through another approved process. The pharmacy checks the prescription, confirms the medication and dose, and processes it through your insurance if applicable. Before a new prescription is filled, you may need to provide: Your child’s name and date of birth. The prescribing doctor’s details. Your pharmacy and insurance information. Any required insurance authorisation or prescription details. For certain medications, the pharmacy may need additional information from your child’s gastroenterologist before dispensing the medicine. If the pharmacy cannot fill the prescription, ask what is needed and whether the issue relates to stock availability, insurance approval, or the prescription itself. 🔎 Understanding pharmacy labels Prescription labels contain important information about how your child’s medication should be taken and stored. Check the label for: Medication name: Confirm that the medicine matches the prescription. Strength: Check the amount of medicine in each tablet, capsule, or dose. Directions: Follow the prescribed instructions for how and when to take it. Quantity: Check how much medicine has been supplied. Refills: Look for the number of refills authorised, if any. Expiration or beyond-use information: Follow the date and storage instructions provided by the pharmacy. Pharmacy contact details: Keep these handy if you have questions. If anything looks different from what you expected, speak with the pharmacist before giving the medication. Do not change the dose or instructions based on assumptions. 📅 How to arrange prescription refills Some prescriptions include authorised refills, while others require the doctor to issue a new prescription. It is a good idea to check how much medication your child has left and arrange refills before running out. To help avoid delays: Check the remaining supply regularly. Contact the pharmacy several days before the medication is due to run out, allowing extra time if authorisation is required. Ask whether the pharmacy offers refill reminders or automatic refill services. Make sure the pharmacy has your current contact and insurance details. Check whether your child needs blood tests or a medical review before the doctor will authorise another prescription. Automatic refills are not available for every medication, and some prescriptions cannot be refilled without a new authorisation. If your child’s medication is running low and a refill is delayed, contact the pharmacy and prescribing team promptly rather than waiting until the supply is exhausted. 💉 What is a specialty pharmacy? A specialty pharmacy dispenses certain medications that require additional handling, monitoring, or coordination. Some biologic treatments used for Crohn’s disease and ulcerative colitis may be supplied this way. Specialty pharmacies may help with: Coordinating prescriptions with your child’s specialist. Processing insurance approvals. Arranging delivery and temperature-controlled shipping when required. Explaining storage and handling instructions. Coordinating refill schedules. Providing information about medication administration and support services. Some specialty medications are delivered to your home, while others may be supplied to a healthcare facility for administration. The arrangements depend on the medication, insurance plan, and treatment provider. 🧊 Storing and handling IBD medications Different medications have different storage requirements. Some need refrigeration, while others can be stored at room temperature under specific conditions. Always follow the instructions supplied with the medicine. Check whether refrigeration is required. Keep medications in their original packaging when appropriate. Store medicines safely out of reach of younger children. Follow instructions for travel and temporary storage. Do not use medication that appears damaged or has been stored outside its permitted conditions without checking with a pharmacist. If a refrigerated medication is accidentally left out, contact the pharmacy or manufacturer for advice before using it. The permitted time outside refrigeration varies between products. 💳 Understanding insurance and prescription costs In the USA, the amount you pay for an IBD medication depends on your insurance plan, the medicine prescribed, the pharmacy, and whether the medication is covered. You may encounter: Copayments: A set amount you pay for a prescription. Deductibles: An amount you may need to pay before certain insurance benefits apply. Coinsurance: A percentage of the covered cost that you pay. Prior authorisation: Approval that your insurer may require before covering a medication. Preferred pharmacy requirements: Rules requiring you to use a particular pharmacy for certain prescriptions. Before starting a new medication, contact your insurer to confirm coverage, out-of-pocket costs, and which pharmacy you must use. If a prescription is unexpectedly expensive or denied, ask the pharmacy whether the issue is related to insurance coverage, a deductible, a preferred medication requirement, or missing authorisation. Your child’s medical team may be able to help resolve coverage issues or discuss appropriate alternatives. ✈️ What if you are travelling or away from home? Planning ahead can help prevent medication problems during holidays, school camps, or family visits. Before travelling: Check that your child has enough medication for the trip. Arrange refills early if needed. Keep medicines in their original labelled packaging when possible. Follow storage requirements, particularly for refrigerated medicines. Carry essential medication in your hand luggage when flying, where appropriate. Ask the pharmacy or prescribing team about transporting temperature-sensitive medications. If you will be away for an extended period, ask whether your pharmacy can arrange an appropriate supply or delivery to your destination. 📞 What if there is a problem with a prescription? If the pharmacy cannot supply your child’s medication, contact the pharmacist to understand the reason. Possible issues include: The prescription has expired or has no refills remaining. The medication is temporarily unavailable. Insurance approval is outstanding. Your insurance plan requires a different pharmacy. The doctor needs to review your child’s treatment before authorising more medication. Contact your child’s gastroenterologist if the delay could interrupt treatment. Do not substitute another medication, change the dose, or stop treatment without appropriate medical advice. Managing prescriptions may feel complicated at first, particularly when your child needs specialist medication. Keeping track of supplies, understanding pharmacy instructions, and knowing who to contact can make the process easier and help your child stay on track with their treatment. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. Facebook WhatsApp LinkedIn Pinterest Copy link You might also like When to seek medical help for your child’s IBD Learn how to recognise worsening IBD symptoms in your child, when to contact their healthcare team, and when to seek urgent or emergency medical care in the USA. Read More Finding a Pediatric IBD Specialist A guide to finding a pediatric IBD specialist in the USA, including where to look, what to ask, understanding referrals and insurance, and finding the right medical team for your child. Read More Medication safety and monitoring Learn how to keep your child safe while taking medication for Crohn’s disease or ulcerative colitis. Discover why regular blood tests matter, how to reduce infection risks, which vaccination precautions to know, why sun protection is important, and which side effects to watch for. Read More The MLAK key: easier access to toilets across Australia Learn how the MLAK key can help children with Crohn’s disease or ulcerative colitis access compatible locked public toilets across Australia. Find out how to apply, what it costs, where to use it, and how to make outings and family trips a little less stressful. Read More Hospital admissions & emergency care Learn what to expect if your child with Crohn’s disease or ulcerative colitis needs hospital care in Australia, including emergency care, hospital admissions, treatment, what to bring, discharge planning, and support for families. Read More IBD and Australian schools Learn how Australian schools can support students with IBD, including toilet access, absences, fatigue, medication, exams, schoolwork, sport, excursions and reasonable adjustments for Crohn’s disease and ulcerative colitis. Read More Understanding IBD Medication Learn how doctors in the USA choose IBD medications for children, including the factors that influence treatment decisions, different medication options, and how your child’s individual needs guide their care. Read More Mental health and emotional support Explore mental health and emotional support options for Australian children with Crohn’s disease or ulcerative colitis and their families. Learn how to find psychologists, access Medicare rebates, connect with free counselling services, and support your child’s emotional wellbeing at home and school. Read More Medication costs and prescriptions Understand medication costs for children with Crohn’s disease or ulcerative colitis in Australia. Learn about PBS prescription prices, concession cards, the PBS Safety Net, specialist treatments and practical ways to manage ongoing medication expenses. Read More School camps, excursions and sport Learn how Australian schools can help children with Crohn’s disease or ulcerative colitis participate in camps, excursions and sport. Discover practical tips for planning medication, ensuring toilet access, managing symptoms and working with teachers to keep activities safe and inclusive. Read More Medicare & healthcare costs Understand how Medicare works for children with IBD in Australia, including specialist rebates, public and private hospital costs, subsidised medications, Medicare Safety Nets, and ways to manage out-of-pocket healthcare expenses. Read More Australian IBD medications Learn about IBD medications in Australia, including mesalazine, steroids, azathioprine, biologics, the PBS, medication costs, prescriptions, hospital medicines and what parents need to know about managing Crohn’s disease and ulcerative colitis in children. Read More IBD appointments, tests and monitoring Understand what to expect from IBD appointments, medical tests, and ongoing monitoring in the USA, including how to prepare, track results, and coordinate your child’s care. Read More Financial assistance for families Explore financial assistance available to Australian families caring for a child with Crohn’s disease or ulcerative colitis. Learn about carer payments, medication subsidies, Medicare Safety Nets, travel assistance, government benefits and support services that may help reduce the financial burden. Read More The National Public Toilet Map: finding toilets across Australia Discover how the free National Public Toilet Map can help families affected by Crohn’s disease or ulcerative colitis find public toilets across Australia. Learn how to search nearby facilities, check opening hours and accessibility, plan trips, and find toilets that require an MLAK key. Read More School attendance & catching up on learning Learn how to manage school absences caused by IBD flares, medical appointments and hospital stays. Discover practical ways to catch up on schoolwork, arrange flexible deadlines, support recovery and help your child return to the classroom with confidence. Read More Finding an IBD specialist in Australia Learn how to find a paediatric gastroenterologist in Australia, get a referral, understand public and private specialist care, and access the right support for your child living with Crohn’s disease or ulcerative colitis. Read More The Australian healthcare system Understand how the Australian healthcare system works for children with IBD, including Medicare, public and private healthcare, GP referrals, paediatric gastroenterologists, hospitals, medications, healthcare costs and finding IBD services across Australia Read More Understanding your child’s IBD care team Learn about the healthcare professionals involved in your child’s IBD care in the USA, what each person does, and how they work together to support your child’s health and wellbeing. Read More Accessing biologic treatments in Australia Learn how children with Crohn’s disease or ulcerative colitis can access biologic treatments in Australia. Understand specialist assessments, PBS approval requirements, hospital infusions, at-home injections, treatment costs and ongoing monitoring. Read More Camp Fearless: youth camps for young people with IBD Discover Camp Fearless, a youth camp run by Crohn’s & Colitis Australia for teenagers living with Crohn’s disease or ulcerative colitis. Find out what to expect, how young people can connect with others who understand life with IBD, and where to find information about upcoming camps. Read More School support plans & adjustments Learn how Australian schools can support students with Crohn’s disease or ulcerative colitis through individual support plans, toilet access, flexible deadlines, adjustments during flares, and help with absences. Includes guidance for working with your child’s school and a link to our free IBD School Support Plan download. Read More Australian IBD organisations Find Australian IBD organisations, support services and reliable information for children and families living with Crohn’s disease and ulcerative colitis. Discover ways to connect with other families, find IBD services and join the IBD Kids Facebook Group. Read More