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Medication Medication side effects: What should parents know? Learn about common IBD medication side effects in children, including steroids, biologics and other Crohn’s disease and ulcerative colitis treatments, and when to seek medical advice. When your child starts a new IBD medication , it’s normal to wonder about side effects. You may find yourself watching closely for every headache, tummy ache or change in mood and wondering: “Is this the medication?” “Is this just part of their IBD?” “Should I call the doctor?” “Should we stop the medication?” The answer isn’t always straightforward. Children with Crohn’s disease or ulcerative colitis can experience symptoms from their IBD, infections, everyday childhood illnesses or their medication. Sometimes it can be difficult to tell the difference. That’s why knowing what to watch for — and knowing who to contact — is so important. 💊 Every medication is different There isn’t one list of side effects that applies to all IBD medications. Different treatments work in different ways and have different potential side effects. Your child’s treatment might include medicines such as: Aminosalicylates Corticosteroids Immunomodulators Biologics Biosimilars Other treatments recommended by their IBD team The specific side effects, monitoring and warning signs depend on the medication your child is taking. Medication availability and prescribing information can also vary between countries. Always use the information provided for your child’s specific medication and follow the advice of their healthcare team. What is a side effect? A side effect is an unwanted effect that can occur when taking a medication. Some side effects may be: Mild Temporary More common when starting treatment Related to the dose Manageable without stopping treatment Other side effects can be more serious and require medical attention. Your child’s healthcare team should explain the important side effects associated with their medication and tell you which symptoms should prompt you to call. 🤔 Is it the medication or the IBD? This can be one of the hardest questions for parents. For example, your child may develop: Tummy pain Nausea Headaches Fatigue Changes in appetite Diarrhoea But these symptoms can have many possible causes. They could be related to: Active IBD A medication An infection Another illness Dehydration Poor sleep Stress Something unrelated to IBD Don’t assume that every new symptom is a medication side effect. If you’re unsure, tell your child’s IBD team what has changed. 🩺 Ask what is normal for your child’s medication When your child starts a new medication, ask their healthcare team: What side effects are relatively common? Which symptoms should I expect? Which symptoms should make me call? Which symptoms require urgent medical attention? How long might mild side effects last? Does my child need blood tests? Are there medications or supplements they should avoid? Does the medication affect vaccinations? What should we do if my child develops an infection? What should we do if a dose is missed? Writing down the answers can be helpful, especially when you’re dealing with several medications. 🌿 Steroids Corticosteroids such as prednisolone or budesonide may be used to help bring an active IBD flare under control. Steroids can have a range of side effects, particularly with higher doses or longer courses. Depending on the medication and duration of treatment, these may include: Increased appetite Changes in mood or behaviour Difficulty sleeping Acne or skin changes Fluid retention Changes in blood pressure Changes in blood glucose Effects on growth with prolonged use Your child’s healthcare team will consider the benefits and risks of steroid treatment and usually aims to use steroids for the shortest appropriate period. Never stop steroid treatment suddenly unless your child’s healthcare team tells you to. 🧪 Immunomodulators Medicines such as azathioprine, mercaptopurine and methotrexate can affect the immune system and may require regular blood monitoring. Your child’s healthcare team may monitor blood counts and liver function, along with other tests depending on the medication. Contact the healthcare team if your child develops symptoms that concern you, particularly: Fever Significant sore throat Unusual bruising or bleeding Marked weakness Yellowing of the skin or eyes Severe abdominal pain Other symptoms your healthcare team has specifically warned you about Your child’s team will tell you which symptoms are particularly important for their medication. 💉 Biologics and biosimilars Biologic medicines and biosimilars are used to treat many children with moderate-to-severe IBD. Potential side effects vary depending on the specific medication. Some children may experience reactions around an injection site or during an infusion. Because these medicines can affect parts of the immune system, your child’s healthcare team may also monitor for infections and other specific risks. If your child receives an infusion, the healthcare team will monitor them during and after treatment according to the medication and local protocol. If your child uses an injectable medication at home, make sure you know: How to store it How to give it What to do if a dose is missed What injection-site reactions are expected Which symptoms require medical advice 💊 Aminosalicylates Aminosalicylates, including medicines such as mesalazine, are commonly used in the treatment of some children with IBD, particularly ulcerative colitis. Potential side effects depend on the specific medication. If your child develops a new or unusual symptom after starting or changing treatment, let their healthcare team know. They can determine whether it could be related to the medication or whether another explanation is more likely. 🦠 Infections and IBD medication Some IBD treatments affect the immune system. This can influence how your child’s body responds to certain infections. Tell your child’s healthcare team if your child develops an infection or becomes unexpectedly unwell. Don’t automatically stop their medication unless you’ve been given specific instructions to do so. Some medications may have particular instructions during infections, so your child’s treatment plan matters. 💉 Vaccinations and medication Vaccination advice can depend on your child’s medication. Some treatments require special consideration around live vaccines , while other vaccines may be recommended as normal. Vaccination schedules and recommendations also vary between countries. Tell the healthcare professional giving the vaccine that your child has IBD and provide an up-to-date list of their medications. If you’re unsure whether your child can have a particular vaccine, ask their IBD team first. 🧪 Why are blood tests important? Some IBD medications require regular blood monitoring. Blood tests can help your healthcare team check for medication-related problems before your child develops noticeable symptoms. Depending on the medication, monitoring may include: Full blood count Liver function Kidney function Inflammatory markers Nutritional markers Other medication-specific tests The frequency of testing varies according to the medication, your child’s age, their health and local treatment guidelines. If you aren’t sure why your child is having a particular blood test, ask. 📞 When should I call the IBD team? Contact your child’s IBD team if you notice a new or concerning symptom after starting or changing medication. You should also contact them if: A side effect is getting worse Your child is struggling to take the medication Your child develops a significant infection You are worried about a medication reaction You are unsure whether to give the next dose Your child has missed several doses Your child develops new symptoms that could be related to their treatment You are considering stopping the medication You don’t need to work out whether the medication is definitely responsible. Tell the team what happened and let them help you decide what to do. 🚨 When does a side effect need urgent medical attention? Some symptoms can indicate a serious reaction or another medical problem. Seek urgent medical care if your child develops symptoms such as: Difficulty breathing Swelling of the face, lips, tongue or throat Fainting or severe dizziness Severe or rapidly worsening abdominal pain Heavy bleeding Repeated vomiting with inability to keep fluids down Severe dehydration Significant confusion or difficulty staying awake A severe allergic-type reaction A very high or persistent fever with your child appearing seriously unwell If your child is seriously unwell or you believe they are experiencing an emergency, seek emergency medical care rather than waiting for the IBD team to respond. ❌ Should I stop the medication? This is one of the most important questions. Don’t stop your child’s IBD medication without medical advice unless your healthcare team has specifically given you instructions to do so in a particular situation. Stopping treatment suddenly can sometimes cause problems, and the risks of stopping vary between medications. If you think your child is having a side effect, contact their IBD team or pharmacist and explain exactly what has happened. They may advise you to continue, pause, change or stop the medication — depending on the situation. 📝 Keep a medication and symptom record If you’re concerned about a possible side effect, write down: Medication Dose Date started When the symptom began What happened How long it lasted Any other symptoms Any other medication taken This can help your healthcare team work out whether there may be a connection. It can also be useful to record when medication doses are taken, particularly if symptoms appear at a particular time afterwards. 👧 Help your child describe what they’re feeling Children don’t always describe side effects in medical terms. Instead of asking: “Are you having any side effects?” try asking: “How does your tummy feel?” “Have you noticed anything different?” “Do you feel different after taking your medicine?” “Have you felt dizzy or sick?” “Does anything hurt?” “Is there anything you’re worried about?” As your child gets older, encourage them to speak directly with their healthcare team. Learning to recognise and report medication side effects is an important part of becoming independent with IBD. 🌍 Medication advice varies between countries IBD medication availability, approved uses, age restrictions, monitoring requirements and prescribing guidelines can differ between countries. The same medication may also have different brand names or formulations. For this reason, online information should be treated as general education rather than instructions for your individual child. If you’re unsure about a side effect, use the medication information provided in your country and contact your child’s local healthcare team or pharmacist. ❤️ Don’t be afraid to ask It is completely reasonable to ask questions about your child’s medication. You might worry that you’re being difficult or asking too many questions. You’re not. Understanding your child’s treatment helps you feel more confident and helps you know what to look out for. Ask: “What should I expect?” “What should worry me?” “Who should I call?” “What should I do if this happens?” Those four questions can give you a much clearer plan. Medication should feel like a partnership Your child’s IBD medication is an important part of managing their Crohn’s disease or ulcerative colitis, but you don’t have to navigate it alone. Your child’s gastroenterologist, IBD nurse, pharmacist and other healthcare professionals can help you understand what each medication does, what to watch for and what to do if something changes. You don’t need to know every possible side effect. You just need to know which warning signs matter for your child’s specific treatment — and who to call when you’re unsure. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Medication Medication questions to ask your IBD team This practical guide helps parents and carers know what to ask about IBD medications, including doses, side effects, monitoring, vaccines, travel and what to do if treatment isn’t working. Includes a printable checklist to take to your next appointment. When your child has Crohn’s disease or ulcerative colitis, there can be a lot to understand about their IBD medications. What does the medication do? How long will it take to work? What side effects should you look out for? What happens if your child misses a dose? It can be difficult to remember everything during an appointment — especially when there is a lot of information to take in. That’s why we’ve created a simple Medication Questions to Ask Your IBD Team checklist that you can print and take with you. 💊 Questions about the medication You might want to ask: What is this medication called? What does it do? Why is it being recommended for my child? Is it being used to treat an IBD flare, maintain remission, or both? When should we expect it to start working? How will we know if it is working? 📅 Taking the medication Ask your IBD team about the practical side of treatment: What dose should my child take? How often should they take it? Does it need to be taken with food? What should we do if a dose is missed? What should we do if my child vomits after taking it? Are there any medicines, foods or supplements they should avoid? Medication instructions can vary depending on the specific treatment, your child and where you live, so it is important to get instructions for your child’s medication rather than relying on general advice. ⚠️ Side effects Every IBD medication can have different possible side effects. Ask: What side effects are common? Which symptoms should make us contact the IBD team? Which symptoms need urgent medical attention? What should we do if we think my child is having a side effect? Should we continue the medication if a side effect occurs? If your child develops a new or concerning symptom, don’t assume that it is necessarily caused by their medication. Symptoms can also be related to IBD, an infection or another cause. 🧪 Tests and monitoring Some IBD treatments require regular monitoring. You can ask: Does my child need regular blood tests? Which tests will they need? How often will they need them? Will they need stool tests such as faecal calprotectin? How will you check whether the treatment is controlling inflammation? Your child’s IBD team can explain what their results mean and how they fit together with their symptoms and overall health. 🦠 Infections and vaccines Some IBD medications can affect the immune system, so it is useful to know what to do if your child becomes unwell. Ask: What should we do if my child develops a fever or infection? Does this medication affect their immune system? Are there any vaccines they should avoid? Should we contact the IBD team before starting another medication? 💉 If your child has injections or infusions If your child’s treatment is given by injection or infusion, ask: How is the medication given? How often is it given? Can we give it at home? How should it be stored? What should we do if we miss an injection? What reactions should we watch for? Your healthcare team should give you specific instructions for your child’s treatment. ✈️ Travel If you’re planning a holiday or travelling away from home, ask your IBD team: Can my child travel while taking this medication? How should we store it while travelling? Do we need extra medication? Do we need a letter or other travel documentation? What should we do if the medication is lost? What should we do if my child becomes unwell while travelling? For medicines that need refrigeration or regular injections, make sure you understand the storage and transport requirements before you travel. 🔄 What if the treatment doesn’t work? Sometimes a medication doesn’t control IBD as expected. Ask: How long will we wait to see if it is working? What happens if my child’s symptoms don’t improve? What happens if tests still show inflammation? What other treatments could be considered? When would you consider changing medication? Not every treatment works in the same way for every child. Your IBD team can explain what they will look for and what the next steps might be. 📝 Download the printable checklist You don’t need to remember all of these questions. We’ve put them together in a printable Medication Questions to Ask Your IBD Team checklist that you can take to your child’s next appointment. IBD Kids Medication Questions to Ask Your IBD Team .pdf Download PDF • 180KB It includes space to write down your child’s medication, dose, instructions, important contacts and the answers from your appointment. Before you leave your appointment Make sure you know: ☐ What medication your child is taking and why ☐ How and when to give it ☐ What to do if a dose is missed ☐ Which side effects to watch for ☐ When to contact the IBD team ☐ When urgent medical care is needed ☐ What monitoring and tests are required Remember You don’t have to understand everything about your child’s IBD treatment all at once. Your IBD team is there to answer your questions, explain your child’s treatment and help you understand what to expect. Take the checklist with you, write things down and don’t be afraid to ask questions more than once. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Appointments What to ask at your child's gastro appointment | IBD checklist Use this practical IBD checklist to know what to ask about treatment, medications, tests, flares, nutrition, growth and school. Going to your child's paediatric gastroenterology appointment? Here's a list of questions to help you feel prepared and make the most of your time with your child's IBD team. Gastro appointments can feel overwhelming. There may be test results to discuss, medications to review, symptoms to explain and a long list of questions going through your head. And then, as soon as the doctor asks, “Do you have any questions?” , your mind can suddenly go blank. You're not alone. Having your questions written down before the appointment can make it easier to remember what you want to ask and help you feel more confident about your child's care. You don't need to ask every question on this list. Choose the ones that are relevant to your child and their current situation. 🩺 Questions about your child's IBD If your child has recently been diagnosed with Crohn's disease, ulcerative colitis or another form of inflammatory bowel disease (IBD) , you may still be trying to understand exactly what their diagnosis means. Ask: What type of IBD does my child have? Where is the inflammation? How active is their IBD at the moment? How severe is the inflammation? What do their recent tests tell us? Is there anything about their diagnosis that we should understand better? What should we expect over the next few months? What does remission look like for my child? Don't worry if you don't understand a medical term. Ask your gastroenterologist to explain it in plain language. You're allowed to ask questions until it makes sense to you. 💊 Questions about medication and treatment If your child has started a new medication or their treatment is being changed, make sure you understand what the medication is for and what to expect. Ask: What is this medication supposed to do? How does it work? How long should it take to start working? What dose does my child need? When should they take it? Does it need to be taken with food? What side effects should we watch for? What should we do if we miss a dose? Are there any medications or supplements my child shouldn't take with it? How will we know whether the treatment is working? What happens if this treatment doesn't work? How long might my child need to take this medication? If your child takes several medications, ask your doctor or pharmacist to go through the entire medication list with you. 🧪 Questions about blood tests and stool tests Children with IBD often have regular blood and stool tests to monitor their condition. You may want to ask: What are you checking in the blood tests? What were my child's latest results? Are their iron levels okay? Are they anaemic? Are their vitamin levels okay? What does their inflammatory marker show? What is their faecal calprotectin result? What level of faecal calprotectin are we aiming for? How often should these tests be repeated? Which results would make you concerned? If you receive results through an online portal, don't feel that you have to interpret them yourself. Ask your child's gastroenterologist what the results mean for your child . 🔥 Questions about IBD flares One of the biggest worries for parents is knowing what to do when their child's symptoms change. Ask: What symptoms should make us think my child may be having a flare? How do we tell the difference between a flare and an infection or stomach bug? What should we do if their diarrhoea increases? What should we do if we see blood in their stool? What should we do if their abdominal pain gets worse? When should we contact the IBD team? Who do we contact outside clinic hours? At what point should we take our child to hospital? Is there anything we should do while we're waiting to hear from the team? It's worth having these answers before your child becomes unwell. Save your IBD team's contact number somewhere easy to find. 📈 Questions about growth and nutrition Growth is an important part of managing paediatric IBD . Ask: Is my child growing as expected? Are they gaining weight appropriately? Is their height tracking normally? Could their IBD be affecting their growth? Does my child need to see an IBD dietitian? Does their diet need to change? Are they getting enough calories and protein? Are they getting enough iron? Do they need any vitamin or mineral supplements? Are there foods we should avoid? Are there foods that could help support their nutritional needs? Try not to make major dietary changes based on information you find online without discussing them with your child's healthcare team. Children with IBD have different nutritional needs, particularly during periods of active inflammation. 🏫 Questions about school IBD can affect school in ways that aren't always obvious. Your child may need to manage toilet urgency, fatigue, abdominal pain, appointments or time away from school. Ask: Can my child participate normally at school? Does my child need any restrictions? Can they participate in sport and physical education? Should the school have information about their IBD? Can you provide a letter or medical documentation for the school? What should the school do if my child needs the toilet urgently? What support might they need during a flare? What should we do about missed schoolwork? Are there any considerations for school camps or excursions? Your child's needs may change depending on whether their IBD is active or well controlled. ⚽ Questions about everyday activities An IBD diagnosis doesn't mean your child has to stop doing the things they enjoy. Ask your gastroenterologist about: Sport Swimming Exercise School camps Sleepovers Holidays Travel Social activities Other activities your child enjoys If your child is feeling well, ask whether there are any activities they need to avoid or whether they can participate normally. 💛 Questions about your child's emotional wellbeing IBD can affect much more than your child's digestive system. Children may worry about: Having an accident Finding a toilet quickly Being different from their friends Missing school Taking medication Having procedures Another flare Talking about IBD with other people You can ask: Is there psychological support available for children with IBD? Would you recommend my child see a psychologist? How can we help them talk about their IBD? Are there resources designed specifically for children with IBD? How can we help our child become more confident managing their condition? You don't have to wait until your child is struggling significantly before asking for support. 📋 Questions about your child's next steps Before you leave the appointment, make sure you know what happens next. Ask: When is our next appointment? What tests need to happen before then? When should we repeat blood tests? When should we repeat a stool test? Does my child need another scan or procedure? Are we changing any medications? What should we be monitoring at home? What should we do if symptoms change before our next appointment? Who should we contact if we have questions? And one of the most useful questions of all: “What should I be watching for between now and our next appointment?” This gives you a clear idea of what matters and what doesn't need immediate concern. 📝 What to take to the appointment It can help to arrive with a few things prepared. Consider taking: Your questions Write them down beforehand, even if they seem small. Medication list Include prescription medications, vitamins and supplements. Symptom notes Record changes in bowel movements, abdominal pain, blood or mucus, appetite, energy and sleep. Food and nutrition concerns Write down any concerns about appetite, weight or foods your child is struggling with. School concerns Bring up anything affecting attendance, concentration, toilet access or participation. Previous test results Your healthcare team should have access to your child's medical records, but having important information available can still be useful. ⭐ The question parents often forget When your child is feeling better, it can be tempting to assume everything is fine. But one important question to ask is: “How will we know my child's IBD is under control?” Feeling well is important, but your child's gastroenterologist may also use blood tests, stool tests, growth measurements and other monitoring to assess how well their IBD is controlled. Understanding what your child's team is monitoring and why can make future appointments much easier. ❤️ You don't need to remember everything It's completely normal to leave a gastro appointment and realise you forgot to ask something. Write questions down as you think of them between appointments. Keep a note on your phone called “Questions for gastro” and add to it whenever something comes up. You can also take notes during the appointment or ask whether you can have someone with you to help remember what was discussed. Most importantly, don't be afraid to ask your child's gastroenterologist to explain something again. You don't need to know everything about IBD to be a good advocate for your child. You just need to know who to ask, what questions matter and where to get reliable information. 📝 Quick appointment checklist Before you leave, make sure you know: ☐ What is happening with my child's IBD? ☐ Are we changing any treatment? ☐ What medications should my child take? ☐ What test results do I need to understand? ☐ When are the next blood or stool tests? ☐ How is my child's growth? ☐ What symptoms should I watch for? ☐ What should I do if my child has a flare? ☐ Who do I contact if I'm worried? ☐ When is our next appointment? Save this checklist on your phone or print it out before your next gastro appointment. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Tests & Procedures Understanding your child’s IBD tests and results Learn what common blood tests, stool tests, faecal calprotectin, scans, colonoscopies and biopsies can tell you about your child’s Crohn’s disease or ulcerative colitis. Blood tests, stool tests, scans and procedures can all be part of your child’s IBD journey. Here’s what the most common tests are looking for and what the results can tell you. If your child has been diagnosed with inflammatory bowel disease (IBD), or is being investigated for Crohn’s disease or ulcerative colitis, you may suddenly find yourself hearing about tests you have never heard of before. CRP. ESR. Faecal calprotectin. Haemoglobin. Ferritin. Colonoscopy. Biopsy. MRI. It can feel like you’re trying to learn a whole new language. The good news is that you don’t need to understand every number on your child’s pathology report. Your child’s gastroenterology team looks at all the information together — symptoms, examination, growth, blood tests, stool tests, scans and procedures — to understand what is happening with their IBD. This guide explains some of the most common IBD tests for children and what they can tell you. 🩸 Blood tests Blood tests are commonly used when a child is being investigated for IBD and during ongoing monitoring. They can provide information about: Inflammation Anaemia Iron levels Nutritional status Liver and kidney function Infection Your child’s general health Your child may have blood tests regularly, even when they are feeling well. That’s because blood tests can provide information about what is happening inside the body that isn’t always obvious from symptoms alone. 🔥 CRP — C-reactive protein CRP stands for C-reactive protein. It is a blood marker that can increase when there is inflammation in the body. Your child’s gastroenterologist may use CRP to help assess how active their IBD is and whether inflammation appears to be improving with treatment. However, CRP isn’t specific to IBD. It can also increase with other causes of inflammation, including infections. And importantly, a normal CRP doesn’t always mean that IBD inflammation isn’t present . Your doctor will interpret the result alongside your child’s other tests and symptoms. 🧪 ESR — erythrocyte sedimentation rate ESR is another blood test that can provide information about inflammation. Like CRP, ESR is not specific to IBD. Your child’s doctor may look at ESR together with CRP, symptoms and other results rather than relying on one number. 🩸 FBC or CBC You may see FBC or CBC on your child’s blood test results. FBC stands for full blood count, while CBC stands for complete blood count. It measures different types of blood cells, including: Red blood cells White blood cells Platelets One of the things doctors may be looking for is anaemia . ❤️ Haemoglobin Haemoglobin is a protein in red blood cells that carries oxygen around the body. A low haemoglobin level can indicate anaemia. Children with IBD can develop anaemia for several reasons, including iron deficiency, inflammation or blood loss. If your child’s haemoglobin is low, their doctor will look at the rest of their blood results to help work out why. 🧲 Ferritin and iron Ferritin gives information about your child’s stored iron. Iron levels can be affected by several factors, including inflammation, so your child’s doctor may look at a number of iron-related blood tests together. These may include: Ferritin Serum iron Transferrin Transferrin saturation Haemoglobin Iron deficiency and anaemia can occur in children with IBD, particularly when inflammation is active or there has been blood loss. If your child has low iron, ask their healthcare team whether they need dietary changes or iron supplementation. 🧬 Other blood tests Depending on your child’s situation, their doctor may also check: Albumin Electrolytes Liver function Kidney function Vitamin levels Vitamin B12 Folate Vitamin D Zinc Other nutritional markers Not every child needs all of these tests. The tests your child has will depend on their symptoms, diagnosis, treatment and individual needs. 💩 Stool tests Stool tests can provide useful information about what’s happening inside the digestive tract. Your child may be asked to provide a stool sample during the initial investigation of IBD and periodically during treatment. Two important reasons for stool testing are: Checking for infection Some infections can cause symptoms that look similar to an IBD flare. Checking for intestinal inflammation A test called faecal calprotectin can help doctors assess inflammation in the intestines. 🔬 Faecal calprotectin This is a test you will probably hear about a lot if your child has IBD. Faecal calprotectin is a protein found in certain white blood cells. When there is inflammation in the intestines, calprotectin can be released into the stool. A stool sample can therefore be tested for calprotectin to provide information about intestinal inflammation. Doctors may use it to: Help investigate possible IBD Monitor known IBD Assess response to treatment Look for signs that inflammation may be increasing Help distinguish inflammatory conditions from some non-inflammatory causes of symptoms What does a high result mean? A high faecal calprotectin can indicate intestinal inflammation. However, it doesn’t automatically mean your child is having an IBD flare. Other conditions, including infections, can also increase calprotectin. Your child’s gastroenterologist will interpret the result alongside their symptoms and other investigations. What does a normal result mean? A lower result can be reassuring, but it doesn’t always tell the whole story. Your child’s doctor will consider the result alongside their clinical picture. Don’t compare your child’s number with someone else’s number online. The meaning of a result depends on the situation, the laboratory, your child’s age and the other information available to their healthcare team. 🩻 Imaging and scans Sometimes your child’s doctor needs to look at parts of the digestive tract that cannot be fully assessed through a colonoscopy or endoscopy. Depending on your child’s symptoms, they may recommend imaging such as: MRI MR enterography Ultrasound X-ray Other specialised imaging 🧲 MRI and MR enterography An MRI uses magnetic fields and radio waves to create detailed images of the body. MR enterography (MRE) is a type of MRI used to examine the small intestine and surrounding areas. It can be particularly useful when doctors are investigating Crohn’s disease, which can affect parts of the small intestine. MRI does not use ionising radiation. Your healthcare team will explain how your child needs to prepare for the scan. 🩻 Ultrasound An ultrasound uses sound waves to create images of the body. Depending on the situation and the expertise available, intestinal ultrasound may sometimes be used to assess the bowel. Your child’s gastroenterologist will decide whether an ultrasound is appropriate. 🔎 Endoscopy and colonoscopy You may hear the terms endoscopy and colonoscopy used when your child is being investigated for IBD. Upper endoscopy An upper endoscopy, sometimes called a gastroscopy, allows doctors to examine the upper digestive tract. It can look at areas such as the: Oesophagus Stomach Duodenum Colonoscopy A colonoscopy allows doctors to examine the: Rectum Colon Usually the end of the small intestine These procedures allow the gastroenterologist to see the digestive tract directly. 🔬 What is a biopsy? During an endoscopy or colonoscopy, the doctor may take tiny samples of tissue called biopsies. A pathologist examines these samples under a microscope. Biopsies can provide important information about inflammation and other changes in the digestive tract. You may receive a pathology report containing terms you don’t recognise. Don’t worry if you don’t understand it. Your gastroenterologist will interpret the findings alongside the endoscopy, blood tests, stool tests and your child’s symptoms. 📊 Why can test results change? One of the most confusing things for parents can be seeing test results go up and down. That’s because IBD is not always static. Inflammation can change over time, and test results can be affected by things such as: IBD activity Infections Medications Treatment response Nutrition Other illnesses A single result usually doesn’t tell the whole story. Your child’s gastroenterologist will often be more interested in patterns over time . For example, they may compare your child’s faecal calprotectin results from several months apart rather than looking at one number in isolation. 📈 What does “trending” mean? You may hear your doctor talk about trends . This simply means looking at how a result changes over time. For example: January: higher inflammation marker March: lower June: lower again This pattern may provide different information from one isolated result. The same applies to your child’s growth, weight, symptoms and other measurements. ❤️ What if my child’s results don’t match their symptoms? This can happen. Your child might feel completely well while a test shows some inflammation. Or your child might have significant symptoms while certain blood tests look normal. This is why doctors don’t usually diagnose or monitor IBD based on one test alone. Your child’s healthcare team considers: Symptoms + examination + growth + blood tests + stool tests + imaging + endoscopy/biopsies The combination provides a much clearer picture. 📝 Questions to ask about your child’s test results You don’t need to understand every number yourself. At your next appointment, you could ask: What do my child’s results show? Are there signs of active inflammation? Are their iron levels okay? Is their haemoglobin normal? What does their faecal calprotectin result mean? How does this result compare with their previous result? Are their nutritional levels okay? Is my child’s growth on track? Which results are you most interested in monitoring? When should these tests be repeated? What result would make you concerned? Do these results suggest that their treatment is working? And one particularly useful question: “Can you explain which results matter most for my child?” You don’t need to understand every number on the page. 📱 Keep a record of your child’s results If your child has IBD, you may eventually collect quite a few blood and stool test results. Keeping a simple record can make it easier to see what’s happening over time. You could keep a note with: Date Faecal calprotectin CRP ESR Haemoglobin Ferritin Weight Height Symptoms You don’t need to interpret the numbers yourself. The purpose is simply to have the information available when you speak with your child’s healthcare team. 🚩 When should I contact the IBD team? Test results are only one part of monitoring your child’s health. Contact your child’s healthcare team if you are concerned about new or worsening symptoms, particularly: Increasing diarrhoea Blood in the stool Persistent abdominal pain Significant fatigue Reduced appetite Weight loss Fever Dehydration Increasing urgency or frequency of bowel movements New symptoms that are unusual for your child Your child’s IBD team should give you specific advice about when they want you to contact them and what to do if symptoms suddenly worsen. 💛 Don’t let the numbers overwhelm you It can be frightening to see a result marked “high” or “low” on your child’s pathology report. But a number on its own doesn’t tell you how your child is doing. Your child’s doctor looks at the whole picture and considers their symptoms, growth, examination and results together. And if you don’t understand something, ask. You can say: “What does this result mean for my child?” That’s often a much more useful question than simply asking whether a number is normal. Over time, you’ll become more familiar with the tests your child has regularly. For now, you only need to understand what matters for your child at this point in their IBD journey . This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Flares What is a flare? Learn what a flare means, why flares can happen, the signs and symptoms to look out for, and how to tell when it’s time to contact your child’s IBD team. Understand what a flare is, why it happens, and what to look for. If your child has IBD, you may eventually hear the words “flare” or “flare-up.” A flare can be one of the more worrying parts of living with Crohn’s disease or ulcerative colitis, particularly when you are trying to work out whether a change in symptoms is something to watch or something that needs medical attention. The good news is that once you understand your child’s usual pattern, you can become much better at recognising when something is changing and knowing when to contact their IBD team. What is an IBD flare? An IBD flare is a period when the disease becomes more active and inflammation increases , causing symptoms to return or become worse. Children can have periods when their IBD is well controlled and they have few or no symptoms. This is often called remission . A flare is a change from that more settled period, with symptoms suggesting that the IBD may be active again. A flare can be mild, moderate or severe, and it can look different from one child to another . Your child may experience some symptoms but not others. Importantly, a flare isn't simply defined by how unwell your child looks or feels. IBD inflammation can sometimes be present even when symptoms are subtle, which is why your child's IBD team may use blood tests, stool tests and other monitoring to assess what is happening. What causes a flare? There isn't always an obvious reason why a child has a flare. IBD is a complex condition involving the immune system, genetics and the environment. A flare does not mean that you or your child have done something wrong. Sometimes there may be a clear trigger or change around the time symptoms appear. Other times, symptoms can return without an obvious explanation. This is why it is important not to assume that a flare was caused by one particular food, stress, something your child did, or something you did as a parent. Your child's IBD team can help work out whether symptoms are due to active IBD or whether something else, such as an infection, could be causing them. What does a flare look like? The signs of a flare depend on whether your child has Crohn's disease or ulcerative colitis, where the inflammation is located, and how active the disease is. Some common signs include: 🚽 Changes in bowel movements You may notice your child: Going to the toilet more often Having looser or watery stools Having diarrhoea Suddenly needing to get to the toilet urgently Waking during the night to use the toilet Having more accidents or near-misses Having blood or mucus in their poo Having a noticeable change from their usual bowel pattern For a child who normally has predictable bowel habits, a sustained change from their usual pattern can be an important early warning sign. 🤕 Tummy pain Abdominal pain or cramping is another common symptom. Your child may describe: A sore tummy Cramping Pain before or during a bowel movement Pain that comes and goes Feeling uncomfortable or bloated Pay attention to a change from what is normal for your child , rather than looking for one particular type of pain. 😴 Tiredness and low energy Fatigue is common during active IBD. You might notice that your child: Doesn't have their usual energy Wants to sleep more Struggles to get through a normal school day Doesn't want to play or participate in sport Finds everyday activities harder than usual Seems unusually flat or irritable Fatigue can have several causes, including inflammation and anaemia, so it is worth mentioning to your child's healthcare team. 🍽️ Appetite and weight changes Your child may lose their appetite or become reluctant to eat because they associate eating with pain or needing to use the toilet. You may also notice weight loss or difficulty maintaining their usual growth pattern. For children, this is particularly important because growth and nutrition are part of monitoring IBD . If you notice a significant change in your child's appetite, weight or growth, let their IBD team know. 🌡️ Feeling generally unwell Some children may develop a raised temperature or fever during active disease. They may also simply seem different — less energetic, pale, off their food or generally unwell. Don't assume that every fever or tummy upset is an IBD flare. Infections can cause similar symptoms, and your healthcare team may need to investigate the cause. Flares can affect more than the gut IBD is not only a bowel condition. During active disease, some children can also experience symptoms outside the digestive system, including: Joint pain Mouth ulcers Skin rashes Red, painful or inflamed eyes Other inflammatory symptoms These symptoms aren't present in every child, but they are worth mentioning to your child's IBD team. How do I know if it's actually a flare? This can be one of the hardest questions for parents. You can't always tell from symptoms alone. Diarrhoea, tummy pain, fatigue and changes in bowel habits can happen for many reasons. An infection, medication side effect or another gastrointestinal problem can sometimes look similar to an IBD flare. Your child's IBD team may use a combination of: Your child's symptoms and usual bowel pattern Physical examination Blood tests Stool tests, including tests for inflammation Other investigations when needed This is why contacting the IBD team when your child's symptoms are changing can be so useful. Know your child's "normal" One of the most helpful things you can do as a parent is learn what well looks like for your child. Think about: How often do they normally poo? Do they normally wake at night to use the toilet? Do they usually have urgency? Is there normally blood or mucus? How is their appetite? How much energy do they normally have? Are they maintaining their usual growth and weight? What symptoms does your child usually experience when their IBD becomes active? When you know your child's baseline, changes can be easier to spot. Some IBD resources recommend keeping track of bowel frequency, night-time stools and blood when symptoms are changing, as this can help you and the healthcare team identify patterns. What should I do if I think my child is flaring? Don't wait until your child is extremely unwell before getting in touch. If your child develops persistent or worsening symptoms, contact their IBD team or follow the flare plan you have been given. Your child's team may recommend monitoring symptoms at home, arranging blood or stool tests, reviewing medications, or seeing your child in clinic. If your child has an individual IBD action plan , follow that plan rather than relying on general advice online. And importantly, don't start, stop or change your child's IBD medication unless their healthcare team has advised you to do so. When should I seek urgent medical help? Some symptoms need prompt medical assessment. Seek urgent medical advice if your child has symptoms such as: Severe or worsening abdominal pain Significant or large amounts of blood in their stools Signs of significant dehydration Persistent vomiting Severe abdominal swelling or pain A high fever, particularly if your child is taking an immunosuppressive medicine A child who is becoming very unwell, unusually sleepy, faint or difficult to wake Crohn's & Colitis Australia specifically advises urgent medical attention for severe abdominal pain, significant bleeding, dehydration and certain combinations of fever and immunosuppressive treatment, among other red flags. If you are concerned that your child is seriously unwell, seek urgent medical care rather than waiting for an appointment. A flare is not a failure It can be easy to feel like you've done something wrong when your child's symptoms return. You haven't. IBD is a chronic condition, and flares can happen even when your child is taking their medication and your family is doing everything you have been advised to do. The aim of treatment is to control inflammation, reduce symptoms and help your child stay well, grow and get on with being a kid. A flare is a signal that your child's IBD may need attention — not a sign that anyone has failed. The most important thing to remember You don't need to become an expert at diagnosing a flare yourself. Your job is to notice changes, know what is normal for your child, keep track of important symptoms, and know when to contact their IBD team. The earlier a change is recognised and discussed with the healthcare team, the sooner you can work out what is happening and what your child needs. This information is for general education and does not replace advice from your child’s IBD or healthcare team. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Flares What does an IBD flare look like? Learn what an IBD flare can look like in children, including changes in bowel habits, tummy pain, fatigue, appetite, weight and other symptoms to watch for. One of the biggest questions parents have after their child is diagnosed with IBD is: “How will I know if they’re having a flare?” An IBD flare is a period when inflammation becomes active and your child’s symptoms return or become worse after a period of feeling well. Flares can look different from one child to another — and they may not always look exactly like previous flares. Learning your child’s usual symptoms can help you notice changes early and know when it’s time to contact their IBD team. What is an IBD flare? IBD includes Crohn’s disease and ulcerative colitis. Both conditions can have periods of active inflammation and periods of remission, when symptoms are much better or absent. A flare can happen suddenly or develop gradually. Some children may have several symptoms at once, while others may notice only one or two changes at first. Your child’s IBD team should ideally help you develop a flare plan that explains what to look out for, who to contact and what to do if symptoms return. 🚽 Changes in poo Changes in bowel habits are often one of the first things parents notice. Your child may: Have diarrhoea or looser stools Need to poo more often than usual Suddenly need to get to the toilet urgently Have blood in their poo Have mucus in their poo Have accidents because they cannot get to the toilet in time Feel like they still need to poo even after going The important thing is not necessarily a particular number of bowel movements. A noticeable change from what is normal for your child can be important. 🤕 Tummy pain Abdominal pain or cramping can occur during an IBD flare. You might notice that your child: Complains of tummy aches more often Holds or rubs their stomach Avoids activities because of pain Wakes during the night because of discomfort Says their tummy hurts before or after going to the toilet Has pain that doesn’t settle Persistent or worsening abdominal pain should be discussed with your child’s healthcare team. 😴 They seem much more tired Fatigue can be an important part of IBD. Your child might: Seem unusually tired Want to sleep more Have less energy for sport or playing Struggle to concentrate at school Come home from school exhausted Become more irritable or withdrawn Fatigue can have many causes, so it doesn’t automatically mean your child’s IBD is flaring. But a noticeable change from their usual energy levels is worth mentioning to their IBD team. 🍽️ Their appetite changes Some children eat less when they are experiencing abdominal pain, nausea or other symptoms. You might notice: A reduced appetite Eating smaller meals Avoiding certain foods because they associate them with pain Feeling sick Vomiting Losing weight If your child is consistently eating less or losing weight, let their healthcare team know. Weight, nutrition and growth are particularly important to monitor in children with IBD. 📏 Growth can be affected IBD can affect a child’s growth and development, particularly when inflammation is active or nutritional needs are not being met. Your child’s healthcare team may monitor: Height Weight Growth over time Puberty and development A change in growth is not something you are necessarily going to notice from day to day. This is why regular appointments and growth measurements are important. 🌡️ Other signs to watch for A flare may sometimes involve symptoms outside the bowel as well. Your child may experience: Fever Joint pain or swelling Mouth ulcers Skin changes or rashes Eye symptoms Increased fatigue Not every symptom outside the gut means that your child’s IBD is active, but new or unusual symptoms should be mentioned to their healthcare team. What does a flare actually look like? There isn’t one specific picture of an IBD flare. For one child, it might look like: “They’re suddenly going to the toilet six times a day and there’s blood.” For another: “They’re complaining of tummy pain, barely eating and coming home from school exhausted.” And sometimes the changes are much more subtle. You may simply notice: “They’re just not themselves.” As you get to know your child’s IBD, you may start recognising their own early warning signs. Keep an eye out for changes from their normal Rather than looking for one specific symptom, think about what is different for your child . You could keep track of: Number of bowel movements Stool consistency Blood or mucus Urgency Tummy pain Appetite Energy levels Weight Temperature Sleep Joint or other symptoms School attendance and activities A simple symptom tracker can make it easier to see whether things are changing and give your IBD team useful information. Is every tummy ache a flare? No. Children with IBD can still get ordinary tummy bugs, constipation, food-related symptoms and other illnesses. Symptoms can also occur for reasons that are not related to active intestinal inflammation. That means you don’t have to work out on your own whether it is definitely a flare . If your child’s symptoms are new, persistent or getting worse, contact their IBD team and ask what they recommend. They may want to assess your child and use blood or stool tests, such as faecal calprotectin, to help determine whether inflammation is active. When should I contact the IBD team? Contact your child’s IBD team if you notice symptoms that could indicate a flare, particularly if they are persistent, worsening or similar to your child’s previous flares. It can be helpful to tell them: What symptoms your child has When they started How often they are happening Whether there is blood or mucus Whether your child has a fever Whether they are eating and drinking normally Whether their energy has changed Whether they have lost weight What medications they are currently taking Don’t change or stop your child’s IBD medication unless their healthcare team tells you to. Your child’s team may already have a written flare plan for you to follow. 🚨 When does my child need urgent medical care? Some symptoms need urgent assessment. Seek urgent medical care if your child is very unwell, has severe or worsening abdominal pain, significant bleeding, persistent vomiting, signs of dehydration, a high or persistent fever, becomes unusually sleepy or difficult to wake, or you are seriously concerned about their condition. If you’re unsure how urgent your child’s symptoms are, contact their healthcare team or local medical service for advice. A flare plan can make things less frightening Having a plan before your child becomes unwell can make a big difference. Ask your IBD team: What are my child’s early warning signs? Who should I contact if symptoms return? What tests might be needed? When should we repeat blood or stool tests? What should we do about medications? When should my child stay home from school? When should we seek urgent medical care? Who should I contact outside normal clinic hours? Keep the plan somewhere easy to find — and make sure other caregivers know where it is too. Remember: you know your child You don’t need to become an expert in interpreting every symptom. You are learning what your child’s IBD looks like. A flare may be obvious, or the first sign may simply be a change in their usual bowel habits, energy, appetite or behaviour. If something doesn’t feel right, it’s okay to contact the IBD team and ask. The earlier changes are recognised and discussed with your child’s healthcare team, the sooner they can decide what needs to happen next. You don’t have to figure it all out on your own. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

New Diagnosis What do all these IBD terms mean? This simple parent-friendly guide explains common Crohn’s disease, ulcerative colitis, treatment, test and medical terms in plain language. Here’s a simple guide to the words and medical terms you may hear after your child is diagnosed with Crohn’s disease or ulcerative colitis. When your child is diagnosed with inflammatory bowel disease (IBD), it can feel like you’re suddenly learning a whole new language. Your gastroenterologist might talk about remission, inflammation, faecal calprotectin, biologics, mucosal healing and biomarkers — all while you’re trying to remember what medication your child needs to take. It can be a lot. You don’t need to become an IBD expert overnight. This guide explains some of the most common IBD terms for parents in simple language. 🩺 The basics IBD Inflammatory bowel disease (IBD) is a group of conditions that cause ongoing inflammation in the digestive tract. The two main types are Crohn’s disease and ulcerative colitis . Crohn’s disease Crohn’s disease is a type of IBD that can cause inflammation anywhere along the digestive tract, from the mouth to the anus. The inflammation can affect different layers of the bowel and may occur in patches, with healthy areas between inflamed areas. Ulcerative colitis Ulcerative colitis (UC) is a type of IBD that causes inflammation in the lining of the large intestine, or colon. It usually starts in the rectum and can extend further into the colon. IBD-unclassified Sometimes doctors cannot clearly determine whether a child’s IBD is Crohn’s disease or ulcerative colitis. In these cases, they may use the term IBD-unclassified (IBD-U). This doesn’t mean that your child’s symptoms aren’t real or that doctors don’t know what they’re doing. It simply means the features don’t clearly fit into one category at that time. Paediatric IBD Paediatric IBD simply means IBD in children and teenagers. Children with IBD have some different considerations from adults, including growth, puberty, nutrition, school and development. 🔥 Understanding inflammation and flares Inflammation Inflammation is the body’s response to injury, irritation or disease. With IBD, the immune system becomes involved in an ongoing inflammatory response in the digestive tract. Your child may have inflammation even when they don’t have obvious symptoms. Active disease This means that there are signs of active inflammation or IBD activity. Your child’s doctor may use symptoms, blood tests, stool tests, scans or endoscopy to assess how active the disease is. Flare An IBD flare is a period when the disease becomes more active and symptoms may return or become worse. Symptoms can include diarrhoea, abdominal pain, blood or mucus in the stool, urgency, fatigue, reduced appetite or weight loss. A flare can look different from one child to another. Remission Remission means that the IBD is under control and there are few or no signs of active disease. Your doctor may talk about different types of remission depending on your child’s symptoms and test results. Remission doesn’t necessarily mean that IBD has disappeared permanently. Your child will still need ongoing monitoring. Relapse Relapse is another term that may be used when IBD becomes active again after a period of improvement or remission. You may hear your doctor use flare and relapse in slightly different ways. 🧪 Tests and results Faecal calprotectin This is a stool test that can help detect inflammation in the intestines. You may hear it called calprotectin or FC. Doctors can use faecal calprotectin to help assess intestinal inflammation and monitor how your child’s IBD is responding to treatment. CRP CRP stands for C-reactive protein. It is a blood test that can be used as a marker of inflammation in the body. A raised CRP can indicate inflammation, although CRP isn’t specific to IBD and can be affected by other things, including infections. ESR ESR stands for erythrocyte sedimentation rate. It is another blood test that can provide information about inflammation. Your child’s doctor may look at ESR alongside other blood tests, symptoms and test results. FBC or CBC FBC stands for full blood count. You may also see CBC, which stands for complete blood count. This blood test looks at different types of blood cells and can help doctors identify things such as anaemia or changes associated with infection or inflammation. Haemoglobin Haemoglobin is a protein in red blood cells that carries oxygen around the body. Low haemoglobin can be a sign of anaemia. Ferritin Ferritin is a protein that stores iron. A ferritin blood test can help doctors assess your child’s iron stores. Iron deficiency and iron-deficiency anaemia can occur in children with IBD. Biomarker A biomarker is something measurable in the body that can provide information about a disease or how it is behaving. In IBD, examples include blood markers such as CRP and stool markers such as faecal calprotectin. 🔬 Scans and procedures Endoscopy An endoscopy allows doctors to look inside parts of the digestive tract using a flexible camera. An upper endoscopy, also called a gastroscopy, can examine areas including the oesophagus, stomach and upper part of the small intestine. Colonoscopy A colonoscopy allows doctors to examine the inside of the large intestine and usually the end of the small intestine. Small tissue samples called biopsies can be taken during the procedure. Biopsy A biopsy is a small sample of tissue taken during a procedure. A pathologist examines the tissue under a microscope to look for signs of inflammation or other changes. MRI MRI stands for magnetic resonance imaging. It uses magnetic fields and radio waves to create detailed images of parts of the body. An MR enterography (MRE) is a type of MRI that can provide detailed images of the small intestine and surrounding areas. Imaging Imaging is a general term for tests that create pictures of parts of the body. Depending on the situation, your child may have an MRI, ultrasound, X-ray or another type of imaging. 💊 IBD treatment terms Medication Medication is used to help control inflammation, treat symptoms and maintain remission. There are several different types of medicines used to treat IBD. Aminosalicylates Aminosalicylates, sometimes called 5-ASAs, are medicines that help reduce inflammation. Mesalazine is one example. Steroids Corticosteroids, often simply called steroids, can be used to reduce inflammation during an IBD flare. They are generally used for shorter periods rather than as a long-term maintenance treatment. Immunomodulator An immunomodulator is a medication that changes or modifies the activity of the immune system. Some immunomodulators are used as part of IBD treatment. Biologic A biologic is a type of medicine made using living cells or biological processes. Biologic medicines target specific parts of the immune or inflammatory response involved in IBD. Biosimilar A biosimilar is a biological medicine that is highly similar to an existing biologic medicine. Your child’s doctor or pharmacist can explain whether a biosimilar is being used and what that means for your child’s treatment. Maintenance treatment Maintenance treatment is treatment used to help keep IBD under control and maintain remission. It is different from treatment used specifically to bring an active flare under control. Induction Induction treatment is the treatment used to bring active IBD under control and achieve remission. Dose The dose is the amount of medication your child needs to take. Your child’s dose may depend on factors such as their weight, age, condition and the medication being used. Side effect A side effect is an unwanted effect that can occur when taking a medication. Not everyone experiences the same side effects. If you’re concerned about a medication your child is taking, speak with their healthcare team rather than stopping it without medical advice. 🥗 Nutrition and growth Enteral nutrition Enteral nutrition is nutrition delivered through the digestive system. In some children with Crohn’s disease, a special liquid nutritional formula may be used as part of treatment. Your child’s gastroenterologist and dietitian can explain whether this is appropriate for your child. Exclusive enteral nutrition Exclusive enteral nutrition (EEN) means receiving nutrition from a prescribed liquid formula without eating regular food for a set period. EEN may be used as a treatment for some children with Crohn’s disease. Malnutrition Malnutrition means that the body isn’t getting enough of the nutrients or energy it needs. Children with active IBD can sometimes be at risk of nutritional deficiencies or difficulty gaining weight. Growth failure Growth failure means that a child is not growing as expected. Because children are still growing and developing, monitoring height, weight and puberty is an important part of paediatric IBD care. 🎯 Treatment goals Clinical remission Clinical remission generally means that your child’s symptoms have improved or disappeared. However, your child’s doctor may also want to confirm that inflammation is controlled through tests or other measures. Biochemical remission This generally refers to blood or stool markers showing that inflammation is reduced or controlled. Your gastroenterologist will interpret these results alongside your child’s symptoms and other tests. Endoscopic remission This means that there are no visible signs of active inflammation during an endoscopic examination. You may also hear doctors talk about mucosal healing. Mucosal healing The mucosa is the inner lining of the digestive tract. Mucosal healing means that the lining has healed and there are no, or very few, visible signs of active inflammation during endoscopy. 👩⚕️ Your child’s healthcare team Paediatric gastroenterologist A paediatric gastroenterologist is a doctor who specialises in digestive conditions in children and teenagers. They are often the specialist responsible for managing a child’s IBD treatment. IBD nurse An IBD nurse specialises in caring for people with inflammatory bowel disease. They can often be an important point of contact for families between gastroenterology appointments. IBD dietitian An IBD dietitian has expertise in nutrition and can help families understand their child’s nutritional needs, growth and dietary concerns. Multidisciplinary team You may hear the term multidisciplinary team, or MDT. This means a group of healthcare professionals who work together to care for your child. The team may include doctors, nurses, dietitians, psychologists and other specialists. 🧠 A few other words you may hear Gastroenterologist A gastroenterologist is a doctor who specialises in the digestive system. A paediatric gastroenterologist specialises in digestive conditions in children. GI tract GI stands for gastrointestinal. The GI tract, or gastrointestinal tract, is the digestive system. Digestive tract Another term for the gastrointestinal tract. It includes organs involved in moving and digesting food through the body. Small bowel The small bowel, or small intestine, is the part of the digestive tract between the stomach and large bowel. It is where much of the digestion and absorption of nutrients takes place. Large bowel The large bowel, or colon, is the part of the digestive tract that absorbs water and forms stool. Ulcerative colitis affects the large bowel. Perianal disease This refers to Crohn’s disease affecting the area around the anus. It can include problems such as fissures, abscesses or fistulas. Your child’s gastroenterologist may involve other specialists if perianal disease occurs. Fistula A fistula is an abnormal connection that develops between two parts of the body. Fistulas can occur in some people with Crohn’s disease. Abscess An abscess is a collection of pus caused by infection. Some children with Crohn’s disease can develop abscesses, including around the bowel or anus. ❤️ Don’t feel like you need to know all of this There can be a lot of new terminology when your child is diagnosed with IBD. You might hear a word at an appointment and think: “I have absolutely no idea what that means.” That’s okay. Ask your child’s gastroenterologist to explain it. Write unfamiliar words down and look them up using reliable sources. You can also ask your healthcare team which websites and resources they recommend for your child’s specific diagnosis. Over time, words like calprotectin, remission, biologic and inflammation will become much more familiar. You don’t need to learn the entire IBD dictionary at once. One new word at a time is enough. 📝 Quick IBD glossary IBD Inflammatory bowel disease Crohn’s disease IBD that can affect anywhere along the digestive tract Ulcerative colitis IBD affecting the large intestine Flare A period of increased disease activity Remission When IBD is under control Inflammation The body’s inflammatory response Calprotectin A stool marker that can help measure intestinal inflammation CRP A blood marker that can indicate inflammation Colonoscopy A procedure used to examine the large intestine Endoscopy A procedure used to examine parts of the digestive tract Biopsy A small tissue sample examined under a microscope Biologic A medicine that targets specific parts of the immune or inflammatory response EEN Exclusive enteral nutrition Paediatric gastroenterologist A doctor specialising in digestive conditions in children Mucosal healing Healing of the inner lining of the digestive tract You don’t have to know it all There can be a lot of new words to learn when your child is diagnosed with IBD. It’s completely normal to feel overwhelmed by medical terms, test results and treatment language. You don’t need to remember everything at once — and it’s always okay to ask your child’s IBD team to explain something again. The more familiar these terms become, the easier it can be to understand what is happening with your child’s Crohn’s disease or ulcerative colitis and feel more confident at appointments. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Flares When does a flare need urgent medical attention? Learn when an IBD flare in children needs urgent medical attention, including severe abdominal pain, bloody diarrhoea, dehydration, vomiting, fever and other warning signs. Most IBD flares can be managed with support from your child’s IBD team . But sometimes symptoms can become severe and need urgent medical attention. Knowing the warning signs can help you feel more confident about what to do if your child with Crohn’s disease or ulcerative colitis suddenly becomes very unwell. The most important thing to remember is this: If your child looks seriously unwell, don’t wait for the IBD team to call you back. Seek urgent medical care. 🚨 When is an IBD flare an emergency? An IBD flare can become serious when your child is losing large amounts of fluid or blood, is unable to keep fluids down, or develops severe abdominal symptoms. Seek urgent medical attention if your child has: Severe or worsening abdominal pain A very swollen, distended or unusually tender abdomen Heavy or ongoing rectal bleeding Large amounts of blood in their poo Repeated vomiting or vomiting that prevents them from drinking Signs of significant dehydration A high or persistent fever, particularly if they look very unwell Fainting, severe dizziness or unusual weakness A very fast heartbeat together with severe symptoms Difficulty staying awake, confusion or a significant change in alertness Severe diarrhoea with signs that they are becoming dehydrated Severe symptoms combined with an inability to pass poo or wind These symptoms can sometimes indicate a serious complication or severe IBD flare and need prompt assessment. 💧 Watch carefully for dehydration Diarrhoea and vomiting can cause children to lose a lot of fluid. During an IBD flare, your child may be particularly vulnerable to dehydration if they are having frequent diarrhoea, vomiting or are not drinking enough. Signs of dehydration can include: A very dry mouth or tongue Passing much less urine than usual Dark or concentrated urine Dizziness or light-headedness Unusual sleepiness or weakness Sunken eyes Being unable to keep fluids down If you think your child is significantly dehydrated, seek medical advice urgently. If they are very weak, difficult to wake, fainting or seriously unwell, seek emergency medical care. 🩸 What about blood in their poo? Blood can occur during an ulcerative colitis or Crohn’s disease flare, but the amount and your child’s overall condition matter. Contact your child’s IBD team if you notice new or increasing blood in their poo. Seek urgent medical attention if there is: Heavy bleeding Bleeding that doesn’t stop Large amounts of blood Blood clots Bleeding together with severe abdominal pain, dizziness, weakness or fainting Bleeding and your child appears very unwell Significant bleeding can cause blood loss and may require urgent assessment. 🤕 Severe abdominal pain should never be ignored Tummy pain can be part of an IBD flare, but severe, constant or rapidly worsening abdominal pain is different from the mild cramping your child may normally experience. Urgent assessment is particularly important if severe pain occurs with: A swollen or distended abdomen Fever Repeated vomiting Rapid heartbeat Significant bleeding Fainting or dizziness Inability to pass poo or wind Severe abdominal pain and swelling can sometimes indicate complications such as a bowel obstruction or, in severe ulcerative colitis, toxic megacolon. These complications require immediate medical assessment. 🤢 What if my child is vomiting? Occasional nausea or vomiting can happen for many reasons, including infections. But persistent vomiting during a suspected IBD flare needs medical advice, particularly if your child: Cannot keep fluids down Is vomiting repeatedly Has worsening abdominal pain Has a swollen abdomen Is becoming very sleepy or weak Is passing very little urine Has blood in their vomit Crohn’s disease can sometimes cause narrowing of the bowel, which can contribute to symptoms such as abdominal pain, vomiting and difficulty passing stool. 🌡️ What if they have a fever? A fever does not automatically mean your child’s IBD is flaring. Children can develop fevers from infections, and infections can sometimes cause symptoms that look similar to an IBD flare. However, fever combined with significant abdominal pain, heavy bleeding, repeated vomiting or a child who looks seriously unwell should be assessed urgently. Your child’s IBD team should also know about a new or persistent fever during a flare, particularly if your child is taking medication that affects the immune system. 😴 What if they suddenly become extremely tired? Fatigue is common in children with IBD, particularly when inflammation is active. But there is a difference between being tired and being unusually weak, difficult to wake or not behaving normally . Seek urgent medical attention if your child: Is extremely weak Faints or nearly faints Is difficult to wake Seems confused Is unusually sleepy or unresponsive Has severe dizziness Looks very pale and unwell These symptoms can occur with significant dehydration, blood loss or other serious illness. 🚽 What if they’re having lots of diarrhoea? There isn’t one specific number of bowel movements that means a child needs emergency care. What’s important is how severe the diarrhoea is and how your child is coping with it . Contact the IBD team if your child is having substantially more bowel movements than usual, particularly if there is blood, mucus, pain, fever or urgency. Seek urgent care if severe diarrhoea is accompanied by: Significant dehydration Heavy bleeding Severe abdominal pain Repeated vomiting Fainting or severe dizziness Extreme weakness A high fever or your child appearing seriously unwell Everyone experiences an IBD flare differently, so your child’s own flare plan should take priority. 🩺 What should I do if I’m worried but it’s not an emergency? Not every flare requires an emergency department visit. If your child has new or worsening IBD symptoms but is otherwise stable, contact their IBD team. This could include: More frequent diarrhoea Blood or mucus in their poo Increased urgency Ongoing tummy pain Reduced appetite Increased fatigue Weight loss Fever Vomiting that is not severe Symptoms that are similar to a previous flare Your IBD team may recommend blood tests, stool tests such as faecal calprotectin , a medication review or an appointment to assess whether inflammation is active. Children with IBD can have symptoms for reasons other than active inflammation, so your healthcare team may need to investigate before deciding whether a flare is occurring. 📋 Follow your child’s flare plan Ideally, every child with paediatric IBD should have a plan for what to do when symptoms become worse. Ask your IBD team: What symptoms should make us call you? What symptoms mean we should go to hospital? Who should we contact during office hours? Who should we contact after hours? What should we do if our child cannot take their medication? When should we arrange blood or stool tests? What should we do if there is blood in the stool? What signs of dehydration should we look for? Keep your child’s plan somewhere easy to access. You may also want to make sure other caregivers know what to do if your child becomes unwell. ❤️ You don’t have to decide whether it’s “really” a flare One of the hardest things for parents can be deciding whether symptoms are serious enough to act. You don’t have to diagnose an IBD flare yourself. If your child has new or worsening symptoms, their IBD team can help determine what is happening and whether they need testing or treatment. And if your child is seriously unwell, urgent medical care comes first . When in doubt, trust what you see You know what your child normally looks like, sounds like and behaves like when they’re unwell. If something feels significantly different — particularly if they have severe pain, heavy bleeding, dehydration, repeated vomiting, a swollen abdomen, fainting or a major change in alertness — don’t wait and see if it passes. Seek urgent medical attention. For less severe changes, contact your child’s IBD team and follow their individual flare plan. Having a plan in place before the next Crohn’s disease or ulcerative colitis flare can make an overwhelming situation feel much more manageable. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

New Diagnosis My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. A step-by-step guide to the early days after an IBD diagnosis, including treatment, medications, tests, nutrition, school, flares and helping your child adjust. Finding out that your child has inflammatory bowel disease (IBD) can be a huge moment for your family. You may feel relieved to finally have an explanation for what has been happening, while also feeling overwhelmed by new medical terms, tests, medications and decisions. You might be wondering: What happens now? Will my child get better? What treatment will they need? What should they eat? Can they still go to school? What should I tell them? There isn't one exact path after an IBD diagnosis. Crohn's disease and ulcerative colitis can affect children differently, and treatment depends on your child's symptoms, test results, age, growth, disease location and individual circumstances. But knowing what the early days may involve can make everything feel a little less overwhelming. 🩺 Step 1: Make sure you understand the diagnosis Your child's IBD team will usually explain whether your child has: Crohn's disease ulcerative colitis or, in some cases, IBD that cannot yet be clearly classified. Ask the team to explain the diagnosis in language you understand. You may want to ask: What type of IBD does my child have? Where is the inflammation? How active is the disease? What did the tests show? Are there any complications? How is this affecting my child's growth or nutrition? What happens next? Don't worry if you can't remember everything. There can be a lot of information during the first few appointments. Take notes, write down questions and ask the IBD team to explain anything you don't understand. 📋 Step 2: Find out who is looking after your child Your child's care may involve more than just a gastroenterologist. Depending on where you live and your child's needs, their IBD team may include: paediatric gastroenterologist IBD nurse dietitian pharmacist psychologist or mental health professional other specialists. Ask who you should contact if you have a question or your child's symptoms change. It can be helpful to save the team's phone number and contact details somewhere easy to find. 💊 Step 3: Talk about treatment Once your child's IBD has been diagnosed, the team will discuss a treatment plan. Treatment generally aims to: reduce inflammation control symptoms achieve remission support healthy growth and development prevent complications maintain remission over time. Your child's treatment may involve medication, nutritional therapy, or a combination of approaches. The treatment recommended will depend on your child's individual IBD and how active it is. Induction and maintenance treatment You may hear the terms induction and maintenance . Induction treatment is treatment used to bring active IBD under control and achieve remission. Maintenance treatment is used to help keep the disease under control and reduce the risk of another flare. Your child's treatment may change over time depending on how they respond. 💊 Step 4: Learn about your child's medications If your child is prescribed medication, ask the IBD team to explain: what each medication is for how much your child needs to take when it should be taken how it should be given common side effects what to do if your child misses a dose whether blood tests are needed whether there are any vaccination considerations what to do if your child becomes unwell how the medication should be stored. You don't need to memorise everything immediately. Keep a written medication list with the medication name, dose and schedule. Medication names can be confusing at first, particularly when you hear both generic and brand names. 🧪 Step 5: Expect more tests and monitoring An IBD diagnosis doesn't necessarily mean the testing is finished. Your child's team may continue monitoring: symptoms blood tests stool tests faecal calprotectin weight height growth nutrition medication response. Your child may also need additional imaging or procedures depending on their diagnosis and treatment plan. Why does monitoring matter? IBD symptoms don't always tell the whole story. A child can sometimes feel better while inflammation is still present. Your child's IBD team may therefore use symptoms, blood tests, faecal calprotectin and other assessments together to understand how well treatment is working. 📈 Step 6: Keep an eye on growth Growth is an important part of paediatric IBD care. Active inflammation, reduced appetite, nutritional deficiencies and other factors can affect weight, height and puberty. Your child's IBD team will usually monitor their growth over time. Don't become alarmed by every small change on the scales. What's important is the overall pattern of growth and what your child's healthcare team sees. If you're concerned about weight, height, appetite or puberty, ask the team whether your child would benefit from seeing an IBD dietitian or another specialist. 🥗 Step 7: Talk about food and nutrition One of the first questions many parents ask is: “What should my child eat now?” There isn't one diet that works for every child with IBD. Your child's nutritional needs may depend on their disease, symptoms, growth, treatment and whether they are currently experiencing a flare. Your IBD team may recommend particular nutritional strategies. Some children may need additional nutrition support, and some may have specific dietary requirements. Try not to restrict foods unnecessarily It can be tempting to remove lots of foods after diagnosis because you're worried they might trigger symptoms. But unnecessary restriction can make it harder for children to get enough energy and nutrients, particularly while they are growing. If you're unsure what your child should eat, ask their IBD team or dietitian rather than making major dietary changes on your own. 🏫 Step 8: Let the school know Your child's school may need to know about their IBD, particularly if symptoms, medication, fatigue or medical appointments could affect school. You don't have to tell everyone everything. Start by identifying the adults who need to know. Depending on your child's circumstances, this might include: classroom teacher year coordinator school nurse or wellbeing staff relevant support staff teachers supervising PE or activities. Talk with the school about practical needs such as: immediate toilet access fatigue absences medical appointments medication catching up after missed school exams and assignments PE and sport camps and excursions. A written school support plan can make these arrangements clearer. 🚽 Step 9: Make a plan for symptoms and flares Your child's IBD team should help you understand what symptoms to look out for and what to do if your child's condition becomes worse. Ask: “How will I know if my child is having a flare?” You may be asked to watch for changes such as: increased diarrhoea blood in bowel movements urgency abdominal pain fatigue reduced appetite weight loss symptoms waking your child overnight other changes that are unusual for your child. Keep your child's IBD team's contact details somewhere easy to access. You may also find it helpful to keep a simple symptom record when your child is unwell. You don't need to track every detail forever. The purpose is to notice meaningful changes and give the healthcare team useful information. 📞 Step 10: Know when to contact the IBD team Before you leave an appointment, ask: “What should make me call you?” Ask the team what symptoms they want you to report and how quickly you should contact them. Also ask what to do outside normal clinic hours. Make sure you understand the difference between: something you can monitor at home something that requires a call to the IBD team something that needs urgent medical attention. If your child is severely unwell or you believe they need emergency medical care, seek urgent medical help. 🧠 Step 11: Give your child information they can understand A diagnosis can be frightening for a child. How much you explain will depend on their age, maturity and what they want to know. Use simple, honest language. You might say: “You have a condition called IBD. It means part of your digestive system gets inflamed. Your doctors are going to help us get the inflammation under control.” Let your child ask questions. They may want to know: Will I always have this? Can I still play sport? Can I still eat my favourite foods? Do I have to take medicine forever? Will my friends know? Will I have to go to hospital? Did I do something to cause this? You don't need to have every answer. It's okay to say: “I don't know yet. Let's ask your IBD team.” 💛 Step 12: Reassure your child that IBD isn't their fault Children sometimes wonder whether they caused their illness. Make sure your child knows: They did not cause their IBD. IBD is not simply caused by eating the wrong foods or doing something wrong. You can also reassure them that having IBD doesn't mean they have to give up everything they enjoy. With appropriate treatment and support, children with IBD can go to school, have friends, play sport, travel and take part in everyday activities. There may be times when adjustments are needed, but IBD doesn't define who your child is. 👨👩👧 Step 13: Give siblings and family time to adjust A diagnosis affects the whole family. Siblings may worry about their brother or sister, feel left out because parents are spending more time at appointments, or simply not understand what's happening. You don't need to explain every medical detail. Simple, age-appropriate information can help: “Their tummy is inflamed and the doctors are helping them get better.” Try to maintain familiar routines where possible. At the same time, give yourself permission to acknowledge that life may feel different for a while. 📚 Step 14: Don't try to learn everything at once There can be a huge amount to learn after diagnosis. You may suddenly hear words like: inflammation remission flare faecal calprotectin colonoscopy biologic immunomodulator induction maintenance mucosal healing. It can feel like learning a completely new language. You don't need to become an IBD expert overnight. Start with the things that matter most right now: What is happening? What treatment is my child starting? What should I watch for? Who do I contact if something changes? You can learn the rest gradually. 📝 Step 15: Start an IBD folder Having one place for your child's information can make life much easier. You could keep: diagnosis information medication list appointment notes blood test results faecal calprotectin results procedure reports dietitian information school support plans emergency contact details questions for the next appointment. A digital folder can work just as well as a physical one. Choose whatever is easiest for your family. 🗓️ Step 16: Keep a list of questions Questions often come to you after you've left the appointment. Keep a note on your phone or in a notebook. You might write: Is this symptom normal? When should we contact you? What should we do if my child misses a dose? What should they eat? Can they play sport? What should school know? When is the next blood test? When will we know if treatment is working? What happens if this medication doesn't work? There is no such thing as a silly question when it comes to your child's health. 🌱 Step 17: Give everyone time to adjust The first days and weeks after diagnosis can feel intense. There may be appointments, tests, medications, school conversations and lots of new information. You don't have to solve everything immediately. Your family is learning how to live with a new diagnosis, and that takes time. Some days may feel organised and manageable. Other days may feel completely overwhelming. Both are normal. 🔎 What should you focus on first? If you're feeling overwhelmed, start here: Today ☐ Make sure you understand your child's diagnosis. ☐ Save your IBD team's contact details. ☐ Write down your child's medications and doses. ☐ Ask what symptoms should prompt you to contact the team. This week ☐ Learn about your child's treatment plan. ☐ Find out what monitoring and tests are coming up. ☐ Talk to the school if support is needed. ☐ Ask about nutrition and whether an IBD dietitian is recommended. ☐ Start a list of questions for the next appointment. Over the next few weeks ☐ Learn more about your child's specific type of IBD. ☐ Understand how treatment is being monitored. ☐ Make sure school support arrangements are in place. ☐ Help your child understand their diagnosis in an age-appropriate way. ☐ Start building routines around medication and appointments. You don't need to do everything on this list at once. 💛 The early days won't always feel like this A new IBD diagnosis can make the future feel uncertain. You may be wondering what life will look like now, whether your child will have more flares, how treatment will work and how IBD will affect school, friendships and everyday life. It's okay not to have all the answers yet. The early days are about getting your child the right care, understanding the treatment plan and gradually learning how to manage IBD as a family. Over time, the medical terms become more familiar. Medication routines become easier. You learn what your child's symptoms look like and when to ask for help. And your child can continue growing, learning, making friends and doing the things they enjoy. You don't have to figure out the whole IBD journey today. Take it one step at a time, stay connected with your child's IBD team and give yourself and your child time to adjust. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More What should I tell my child’s school? What to share about Crohn’s disease or ulcerative colitis, including toilet access, fatigue, flares, medication, absences, exams, PE and emotional wellbeing. Read More

Flares Keeping a symptom and flare diary Learn how to keep an IBD symptom and flare diary for your child, including Crohn’s disease and ulcerative colitis symptoms, bowel changes, pain, fatigue, medications and test results. When your child has IBD, it can sometimes be difficult to remember exactly what happened over the past few days or weeks. Was the diarrhoea getting worse before the tummy pain started? How many times were they going to the toilet? When did the blood first appear? Were they more tired than usual? Did they miss school? These details can be really helpful when you’re talking to your child’s IBD team. A simple IBD symptom and flare diary can help you spot changes, identify patterns and give your child’s healthcare team a clearer picture of what is happening. It doesn’t need to be complicated. 📝 What is an IBD symptom diary? An IBD symptom diary is simply a record of your child’s symptoms over time. You might use: A notebook A printed IBD flare tracker A notes app on your phone A spreadsheet A symptom-tracking app There is no single right way to do it. The best diary is one that is simple enough for you to actually keep using . Why keep an IBD flare diary? Symptoms can change from day to day. When you’re sitting in an appointment several weeks later, it can be surprisingly difficult to remember exactly how your child was feeling. A diary can help you: Notice early changes in symptoms Identify patterns Recognise possible IBD flare symptoms Record how long symptoms have lasted Remember questions for your child’s IBD team Provide useful information during appointments Track changes after treatment See whether symptoms are improving or getting worse Keep important information in one place It can also help your child become more aware of their own symptoms as they get older. 🚽 Track bowel movements For many children with Crohn’s disease or ulcerative colitis, bowel changes can be an important part of recognising an IBD flare. You could record: How many times your child had a bowel movement Whether it was formed, loose or watery Whether there was urgency Whether your child woke overnight to use the toilet Whether there was mucus Whether there was blood Whether an accident occurred You don’t need to describe every bowel movement in great detail. A simple system can be enough. For example: Morning: 2 loose stools, urgency, no blood Afternoon: 1 loose stool, no urgency Evening: 2 watery stools, small amount of blood Over time, this can make changes much easier to see. 🩸 Keep track of blood and mucus If your child has blood or mucus in their stool, record when you noticed it and whether it is changing. You might record: Blood: none / small amount / more noticeable Mucus: none / small amount / noticeable If bleeding becomes heavy or your child appears seriously unwell, don’t wait to complete the diary. Seek medical advice or urgent medical care as appropriate. 🤕 Record tummy pain Pain can be difficult for children to describe, especially younger children. Try to record: Where the pain is When it happens How long it lasts Whether it happens before or after a bowel movement Whether eating seems to affect it Whether it wakes your child at night Whether it stops them doing normal activities For older children, you could use a simple 0–10 pain scale . For younger children, words may work better: No pain → a little sore → quite sore → very sore The goal isn’t to create a perfect medical measurement. It’s to help your child explain what they are experiencing. 😴 Don’t forget fatigue Fatigue is a common symptom of IBD and can be easy to overlook. Your child’s diary could include: Energy level Sleep quality Whether they needed a daytime nap Whether they could participate in normal activities Whether they were too tired for school or sport You might simply use: Energy: 😊 usual | 😐 lower than usual | 😴 very tired A significant change in energy can be useful information for your child’s healthcare team. 🍽️ Track appetite and eating You don’t need to record every food your child eats unless their healthcare team has specifically asked you to. Instead, look for significant changes. For example: Normal appetite Eating less than usual Skipping meals Feeling sick Pain when eating Avoiding certain foods Struggling to finish meals If your child is consistently eating much less, losing weight or struggling with growth, let their IBD team know. 💧 Keep an eye on fluids During diarrhoea or vomiting, hydration becomes particularly important. You could record whether your child is: Drinking normally Drinking less than usual Vomiting fluids Passing urine normally Showing signs of dehydration If your child cannot keep fluids down or you are concerned they are becoming dehydrated, contact their healthcare team or seek urgent medical care depending on the severity. 🌡️ Record other symptoms IBD doesn’t only affect the digestive system. Depending on your child’s experience, you may want to record: Fever Joint pain or swelling Mouth ulcers Skin changes Eye symptoms Headaches Nausea Vomiting Changes in sleep Changes in mood or wellbeing Not every symptom means your child’s IBD is active. The purpose of recording them is to give the healthcare team a fuller picture. 💊 Keep track of medications It can be useful to record your child’s IBD medications alongside their symptoms. You could note: Medication name Dose Time taken Missed doses New medications Medication changes Possible side effects If your child’s symptoms change after a medication change, having the dates written down can make the timeline much easier to explain. Don’t stop, start or change your child’s IBD treatment without advice from their healthcare team. 🧪 Record tests and results You don’t necessarily need to keep every test result in your symptom diary, but having important results together can be useful. Depending on your child’s care, this might include: Blood tests Inflammatory markers such as CRP and ESR Haemoglobin and iron levels Stool tests Faecal calprotectin Imaging Endoscopy or colonoscopy results Rather than focusing on one result, your IBD team will usually consider results alongside your child’s symptoms, examination, growth and other information. Keeping a record can help you see how things change over time. 📅 Record school and everyday activities IBD symptoms can affect your child’s life outside the bathroom. You could record: Days missed from school Leaving school early Difficulty concentrating Missed sport Missed social activities Sleep disruption Needing extra rest This information can help show how much an IBD flare is affecting your child’s everyday life. It can also be useful when talking with the school about temporary support. 👀 Look for patterns, not perfection The purpose of a symptom diary isn’t to create a perfect record. You’re looking for changes and patterns . For example, you might notice: “For three days, she had more frequent diarrhoea and was unusually tired. On day four, blood appeared.” Or: “His bowel movements stayed normal, but his appetite and energy gradually dropped over two weeks.” These patterns can be useful when discussing symptoms with the IBD team. What if symptoms come and go? That’s common. Your child might feel completely well one day and have several symptoms the next. Try to keep recording even when things improve. Having a record of both good days and difficult days can help show how symptoms are changing over time. It can also help you recognise your child’s individual early warning signs. 📱 A simple daily template You don’t need a complicated chart. You could use something like this: What to track Today Bowel movements Stool consistency Blood/mucus Urgency Tummy pain Appetite Fluids Energy Temperature Other symptoms Medication School/activity Anything unusual For some children, a quick morning and evening check is enough. 👧 Let your child be involved As children get older, encourage them to take an active role in tracking their symptoms. A younger child might use pictures or simple scales. An older child or teenager may prefer to use their phone. This can help them gradually learn: What their normal symptoms are What changes to look for How to describe symptoms When to tell an adult When to contact their IBD team It’s also an important step towards becoming more independent with their IBD treatment and healthcare. 🚨 Don’t wait for the diary A symptom diary is useful for tracking information, but it should never delay getting help. If your child develops severe abdominal pain, heavy bleeding, significant dehydration, repeated vomiting, fainting, extreme weakness, a swollen abdomen or appears seriously unwell, seek urgent medical attention. You don’t need to wait until you’ve completed a week’s worth of symptoms. The diary is a tool — not a substitute for medical care. How long should we keep one? You don’t necessarily need to keep a detailed diary every day forever. You may find it particularly useful: When your child is newly diagnosed When symptoms are changing During a suspected IBD flare After starting or changing treatment Before an IBD appointment When your child’s symptoms are difficult to describe When you’re trying to understand a new pattern Once things are stable, you may only need to record changes or unusual symptoms. Ask your child’s IBD team what information they find most useful. ❤️ You don’t have to track everything It’s easy for an IBD diary to become another thing on your already long parenting list. Keep it simple. You don’t need to record every snack, every trip to the toilet or every little tummy ache. Focus on the information that helps answer: What’s changed? How long has it been happening? How is it affecting my child? Is it getting better or worse? That information can be incredibly valuable. A symptom diary can help you feel more prepared Living with paediatric IBD can sometimes feel unpredictable. A symptom and flare diary won’t prevent Crohn’s disease or ulcerative colitis symptoms, but it can help you feel more organised when things change. It gives you something concrete to take to appointments and can help your child’s IBD team understand what has been happening between visits. Most importantly, it can help you recognise when your child isn’t quite themselves. You don’t need to be perfect at tracking. You just need to notice the changes that matter. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Growth & Puberty Growth questions to ask your IBD team Practical questions to ask about growth, weight, nutrition, puberty, tests and treatment, plus a printable checklist to take with you. Worried about your child’s height, weight, growth or puberty? Growth is an important part of managing childhood IBD. Children with Crohn’s disease or ulcerative colitis may have their height, weight, nutrition and development monitored regularly as part of their care. Appointments can be busy, and it can be difficult to remember everything you wanted to ask. That’s why we’ve created a printable Growth Questions to Ask Your IBD Team checklist that you can take with you to your next appointment. 📋 Download the free growth questions checklist Our printable checklist gives you a practical list of questions to ask about your child’s: height and growth pattern weight nutrition nutritional deficiencies IBD inflammation puberty blood and stool tests medications body image emotional wellbeing next steps and ongoing monitoring. You don’t need to ask every question. Simply choose the ones that are most relevant to your child and use the checklist to make sure nothing important gets forgotten. IBD Kids Growth Questions to Ask Your IBD Team .pdf Download PDF • 317KB Tip: Print the checklist before your appointment and highlight the questions you want to discuss. You can also use the notes section to write down your child’s measurements, test results and recommendations. 📏 Questions about my child’s growth Your child’s doctor will usually look at their growth over time rather than focusing on a single height or weight measurement. You could ask: Is my child growing at the expected rate? How does their current height compare with their previous growth pattern? Has their growth velocity changed? Is their weight appropriate for their height and age? Are they following their usual growth curve? Have they dropped across any growth percentiles? Could their IBD be affecting their growth? What should we be watching between appointments? ⚖️ Questions about weight Changes in weight can happen for many reasons. Weight loss may occur during active IBD, while some children may gain weight as their appetite improves or in response to certain treatments. Ask your child’s IBD team: Is my child’s current weight a concern? Are they gaining weight appropriately? Should we be concerned about recent weight loss? Could their weight changes be related to active IBD? Are they getting enough energy and protein? Should we be trying to increase their energy intake? Would nutritional supplements be helpful? Should we be monitoring their weight at home? If you’re concerned about your child’s nutrition or weight, ask whether a paediatric IBD dietitian could help. 🔥 Could IBD inflammation be affecting growth? Active inflammation can affect growth and nutrition, so it can be useful to understand how well your child’s IBD is currently controlled. You could ask: Could active inflammation be affecting my child’s growth? Is their IBD currently well controlled? Could they have ongoing inflammation even if they seem well? Do their blood tests suggest inflammation? Would a faecal calprotectin test help assess what is happening? Could their recent symptoms or flare have affected their growth? Does their treatment need to be reviewed? Remember that symptoms, blood tests and stool tests are usually considered together. One normal result doesn’t necessarily tell the whole story. 🥗 Questions about nutrition and deficiencies Growing children need enough energy, protein, vitamins and minerals. If your child has poor appetite, food restrictions, weight loss or slowing growth, ask: Is my child getting enough energy and protein for growth? Are there any nutrients we should be monitoring? Should we check iron and ferritin? Should we check vitamin D and calcium? Should we check vitamin B12, folate or zinc? Could my child’s diet be contributing to poor growth? Could a restrictive diet be affecting their nutrition? Would seeing an IBD dietitian be helpful? A dietitian can help your family support growth without unnecessarily restricting foods. 🌱 Questions about growth and puberty Growth and puberty are closely connected. Some children with IBD may experience delayed puberty, particularly when inflammation has been active or nutritional needs haven’t been met. You could ask: Is my child’s puberty progressing as expected? Could their IBD be affecting puberty? Should we be concerned that puberty hasn’t started yet? Could delayed puberty explain some of their growth pattern? Should their hormone levels be checked? Would you recommend seeing a paediatric endocrinologist? Is there anything we can do now to support healthy growth and development? Being smaller or developing later than friends doesn’t automatically mean there is a problem. Your child’s healthcare team can assess their individual growth and development. 🧪 Questions about tests and monitoring If your child’s growth has changed, their healthcare team may decide that further assessment is appropriate. You could ask: What tests do you recommend to investigate their growth? Do they need blood tests? Should we check inflammatory markers such as CRP or ESR? Should we check their iron and nutritional levels? Would a faecal calprotectin test be useful? How often should their height and weight be measured? How often should their growth be reviewed? What would make you want to investigate further? Your child may not need every test. Their healthcare team will decide what is appropriate based on their age, symptoms, IBD and overall health. 💊 Questions about treatment and growth If active inflammation is affecting your child’s growth, controlling their IBD is an important part of supporting healthy development. You could ask: Could any of my child’s medications be affecting their growth or appetite? Is their current IBD treatment controlling inflammation effectively? Could improving disease control help their growth? Are there any treatment changes we should consider? How will we know whether treatment is helping their growth? Are there any medication side effects we should watch for? Never stop or change your child’s prescribed IBD medication without discussing it with their healthcare team. 🧠 Questions about body image and emotional wellbeing Growth and puberty can be sensitive subjects, particularly for older children and teenagers. If your child is worried about their appearance or comparing themselves with friends, you could ask: My child is worried about being smaller or larger than their friends. How can we support them? Could their concerns about weight or appearance be affecting their eating? What should we do if they become anxious about food or their body? Is there someone we can speak with about body image or emotional wellbeing? How can we talk about weight and growth without making our child feel self-conscious? You don’t have to wait until body image concerns become severe before asking for help. 📅 Questions about what happens next Before leaving the appointment, make sure you understand what happens next. Ask: What would you like my child’s growth to look like over the next year? What should we monitor at home? When should we contact you between appointments? What changes would be a reason to bring their appointment forward? When should their growth and puberty be reviewed again? Who should we contact if we have concerns about their nutrition or growth? Your child’s IBD team can also explain which changes are expected and which ones should prompt you to get in touch. 📝 Don’t forget your notes Appointments can be full of information. Use the notes section in the printable checklist to write down: your child’s current height and weight recent changes you’ve noticed questions you want answered test results nutrition advice treatment changes follow-up dates anything you want to remember later. You can also take a photo of your completed checklist after the appointment so you have the information available when you need it. 💛 You don’t need to remember everything Understanding your child’s growth can feel complicated, particularly when you’re also managing IBD symptoms, medications, nutrition and appointments. You don’t need to have all the answers before you see your child’s healthcare team. The most important thing is to ask questions, share changes you’ve noticed and make sure you understand what happens next . Your child’s IBD team can look at their growth pattern, nutrition, puberty, symptoms and inflammation together to work out whether anything needs further investigation or support. Download the checklist, take it to your next appointment and use it as a starting point for the conversation. 📥 Download the checklist Growth Questions to Ask Your IBD Team — Printable Checklist A practical A4 checklist with questions about growth, weight, nutrition, puberty, tests, treatment, body image and next steps. IBD Kids Growth Questions to Ask Your IBD Team .pdf Download PDF • 317KB This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Food & Nutrition When your child is scared to eat How to support children with Crohn’s disease or ulcerative colitis, reduce food anxiety, avoid unnecessary restrictions and know when to seek help from your IBD team or dietitian. “I’m scared to eat because it will make my tummy hurt.” If your child with Crohn’s disease or ulcerative colitis has ever said this, you may have felt completely stuck. You want them to eat and get the nutrition they need — but you also don’t want to pressure them into eating something that might make them feel worse. Fear around food can develop for lots of reasons when a child has IBD. They may have experienced pain after eating, had diarrhoea or urgency at school, vomited during a flare or become worried that a particular food will trigger symptoms. Sometimes the fear starts during a difficult flare and continues even after the inflammation begins to improve. The goal isn’t to force your child to eat. It’s to help them feel safe around food again while making sure their nutritional needs are supported. 💛 Why might a child become scared of food? For a child with IBD, eating can sometimes become associated with unpleasant experiences. They may think: “If I eat, my tummy will hurt.” “I’ll need the toilet straight away.” “What if I have an accident?” “That food made me sick last time.” “I’m scared my IBD will flare.” “I don’t know what food is safe.” “Everyone else can eat this, but I can’t.” These worries can be very real to your child. Even when a particular food isn’t actually causing their intestinal inflammation, your child may have learned to associate it with pain, diarrhoea or urgency. 🔥 A flare can change how children feel about food During an IBD flare, children may experience abdominal pain, diarrhoea, nausea, urgency and reduced appetite. Some may naturally eat less because they don’t feel well. Others may deliberately avoid food because they’re frightened of what will happen afterwards. This can become a difficult cycle: Eat → feel uncomfortable → become worried about food → eat less → become more anxious about eating. If this is happening, it’s worth talking to your child’s IBD team rather than simply removing more foods. 🍽️ Start with foods your child feels comfortable eating If your child is frightened to eat, you don’t necessarily need to start by introducing lots of new foods. Start with foods they already feel comfortable with and that fit within their nutritional needs. Depending on your child’s individual tolerance, these might include familiar foods such as: toast or bread rice pasta potatoes eggs chicken fish yoghurt or a suitable alternative smoothies nut butter fruit cooked vegetables. There is no universal list of “safe foods” for children with IBD. The foods that feel safe for your child should also be considered alongside their nutritional needs and advice from their healthcare team. 🌱 Don’t call foods “good” or “bad” Children can quickly become frightened by the idea that certain foods are “bad for their IBD”. Instead of saying: “You can’t eat that because it will make you flare.” Try: “Let’s see what your tummy is comfortable with today.” Or: “We’ll work this out together.” This helps avoid making food feel dangerous. A food that causes symptoms isn’t necessarily causing the underlying inflammation in your child’s bowel. 📝 Look for patterns rather than blaming individual foods If you think a particular food is causing problems, keep a simple record. You could note: what your child ate how much they ate when symptoms occurred bowel movements pain urgency nausea other symptoms. Try to look for consistent patterns over time rather than making decisions based on one experience. If a food repeatedly appears to cause symptoms, discuss it with your child’s IBD team or dietitian before permanently removing it. 🥛 Be careful about eliminating foods When your child is scared to eat, it can be tempting to remove anything they are worried about. First dairy disappears. Then gluten. Then fruit. Then vegetables. Then anything with fibre. Before long, your child may have only a handful of foods they feel safe eating. This can make it much harder to meet the nutritional needs of a growing child. Paediatric IBD nutrition guidance emphasises the importance of adequate nutrition and individualised dietary care. Restrictive eating can make nutritional management more difficult. If you’re considering removing an entire food group, speak with an IBD-focused paediatric dietitian first. 🥄 Take the pressure off Mealtimes can become stressful when everyone is worried about how much your child is eating. Try to avoid: forcing your child to finish everything bribing them to eat threatening them with consequences repeatedly asking “Have you eaten enough?” talking about calories or weight in a way that makes them anxious making every meal a discussion about their IBD. Instead, create a calm environment. Offer food. Let your child decide how much they eat where medically appropriate. Keep mealtimes as normal as possible. If your child is struggling to eat enough, your healthcare team can help you work out how much support they need. 🍽️ Small meals may feel less overwhelming A large plate of food can feel intimidating to a child who is already worried about eating. You could try: smaller portions more frequent snacks familiar foods alongside less familiar foods eating at regular times offering fluids between meals where appropriate. Smaller, more frequent meals can also be easier for some children experiencing IBD symptoms. 🧒 Give your child some control IBD can make children feel like their body is no longer under their control. Giving them appropriate choices can help. For example: “Would you like toast or cereal?” “Would you like your chicken with rice or pasta?” “Would you like to eat now or in 20 minutes?” You can also involve your child in: choosing meals grocery shopping preparing food packing their lunch choosing snacks deciding where they feel most comfortable eating. The aim isn’t to let your child avoid everything that makes them nervous. It’s to help them feel involved rather than powerless. 🏫 What if they’re scared to eat at school? School can be particularly difficult. Your child may worry about: needing the toilet after eating having diarrhoea during class having an accident being embarrassed by their food classmates asking questions not being able to leave the classroom quickly. Talk with the school about practical support if needed. Depending on your child’s circumstances, this could include: easy toilet access permission to leave class immediately access to fluids somewhere comfortable to eat access to snacks support during a flare a plan for accidents. Reducing the fear around what might happen after eating can sometimes make meals feel safer. ❤️ Separate food from fear Your child may genuinely believe: “If I eat this, my IBD will get worse.” Rather than immediately telling them they’re wrong, acknowledge the feeling. Try: “I can see that you’re worried about what will happen after you eat.” Then: “Let’s work out what your tummy can manage, and we’ll talk to your IBD team about anything we’re worried about.” This shows your child that their fear is being taken seriously without reinforcing the idea that food is dangerous. 🩺 Make sure the IBD itself is being assessed Sometimes food avoidance is a sign that your child is genuinely feeling unwell. If your child has ongoing: abdominal pain diarrhoea blood in their stool nausea vomiting urgency weight loss fatigue reduced appetite tell their IBD team. A child who is scared to eat because eating repeatedly causes significant pain needs more than reassurance about food. Their healthcare team may need to assess whether their IBD is active, whether another problem is contributing to symptoms, and whether nutritional support is needed. 🥗 Ask for an IBD dietitian A paediatric dietitian who understands IBD can be incredibly helpful. They can look at: what your child is currently eating whether they’re getting enough energy protein intake vitamins and minerals growth weight changes foods your child avoids possible food intolerances how to expand their diet safely. They can also help you make sure that dietary changes don’t accidentally create nutritional gaps. 🧠 What if the fear is becoming bigger than food? Sometimes fear around eating becomes persistent even when the original symptoms have improved. You might notice that your child: eats only a very small number of foods becomes extremely anxious at mealtimes refuses foods they previously enjoyed avoids eating because of fear of pain, vomiting or needing the toilet becomes distressed when new foods are offered loses weight struggles to eat enough for healthy growth avoids social situations involving food. This deserves attention. Paediatric feeding and eating difficulties can affect nutrition, growth, development and quality of life, and specialist multidisciplinary support may sometimes be needed. Ask your child’s IBD team about appropriate support. Depending on the situation, this may include a dietitian, psychologist or another healthcare professional experienced in children’s feeding and eating difficulties. 🚩 When should I get help quickly? Contact your child’s IBD team if your child is: eating significantly less than usual losing weight becoming increasingly restrictive with food unable to meet their nutritional needs avoiding fluids experiencing ongoing pain when eating having persistent vomiting or diarrhoea showing signs of nutritional deficiency becoming increasingly anxious or distressed around meals. Seek urgent medical care if your child has severe or worsening abdominal pain, significant dehydration, repeated vomiting with an inability to keep fluids down, heavy bleeding, severe weakness or appears seriously unwell. 🌈 Helping your child feel safe around food again Recovery from food fear doesn’t necessarily happen overnight. It may take time for your child to trust their body again. You can help by: Keeping meals calm. Offering familiar foods. Avoiding unnecessary restrictions. Giving your child appropriate choices. Listening to their worries. Working with their IBD team. Getting dietitian support early. And most importantly, not making food another thing your child feels they have to get “right.” 💜 Remember Your child’s fear of eating isn’t something you need to simply “talk them out of”. It may be connected to real experiences of pain, urgency, diarrhoea or feeling unwell. Listen to the fear. Check whether their IBD is well controlled. Make sure they’re getting enough nutrition. And get professional help when you need it. Your child should be able to enjoy food without feeling afraid of what their body might do afterwards. With the right support, children can gradually rebuild confidence around eating while continuing to get the nutrition they need to grow and thrive. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Medication A parent’s guide to IBD blood tests and medication monitoring Learn which blood tests help monitor your child’s IBD, what the results mean, and how regular testing helps keep their condition and medications safe. If your child has Crohn’s disease or ulcerative colitis, blood tests can become a regular part of life with IBD. You might hear terms like CRP, ESR, haemoglobin, ferritin, liver function, kidney function or white blood cell count and wonder what they actually mean. Blood tests can feel overwhelming at first, but they are an important part of monitoring children with IBD. They can help your child’s healthcare team look for inflammation, check for nutritional problems, monitor the effects of medication and identify potential problems early. Blood tests are only one part of the picture, though. Your child’s symptoms, growth, stool tests such as faecal calprotectin and, when needed, imaging or endoscopy may also be used to understand how their IBD is behaving. 🩸 Why does my child need blood tests? Your child’s IBD team may use blood tests to: look for signs of inflammation check for anaemia or low iron monitor nutritional status check liver and kidney function monitor blood cell counts look for possible medication side effects check for signs of infection when appropriate monitor how your child is responding to treatment provide information alongside symptoms and other tests. How often your child needs blood tests will depend on their age, IBD, treatment, symptoms and individual circumstances. 🔥 CRP and ESR: looking for inflammation Two blood tests you may hear about are CRP (C-reactive protein) and ESR (erythrocyte sedimentation rate) . Both can provide information about inflammation in the body. CRP CRP is a protein that can increase when there is inflammation. Your child’s IBD team may use CRP to help monitor disease activity and look at changes over time. ESR ESR is another blood test that can provide information about inflammation. It can sometimes be useful alongside CRP and other results. Does a normal CRP mean my child’s IBD is under control? Not necessarily. Blood tests are helpful, but they don’t tell the whole story. Some children with IBD can have significant intestinal inflammation without a large rise in blood inflammatory markers. That’s why your child’s team may look at blood tests alongside symptoms, growth, stool tests such as faecal calprotectin and other investigations. One blood test should never be interpreted in isolation. 🩸 Haemoglobin and the full blood count A full blood count (FBC or CBC) looks at different types of blood cells. Your child’s team may be particularly interested in: Haemoglobin — helps assess for anaemia. Red blood cells — carry oxygen around the body. White blood cells — are involved in the immune system. Platelets — can be affected by inflammation and other conditions. Children with IBD can develop anaemia for several reasons, including inflammation and iron deficiency. If your child is tired, pale, short of breath or struggling with energy, their healthcare team may consider whether anaemia or iron deficiency could be contributing. 🧲 Ferritin and iron Ferritin is a measure related to the body’s iron stores. Your child may have their ferritin and other iron measurements checked if their team is concerned about iron deficiency or anaemia. Iron can be particularly important in children because they are growing and need adequate iron for healthy development. It’s possible for a child to have iron deficiency even when their haemoglobin is still within the normal range. Your child’s IBD team can interpret iron results alongside inflammation and the other blood tests. 🧪 Liver and kidney function Some IBD medications require monitoring of the liver and/or kidneys. Your child’s blood tests may therefore include measurements that help assess how these organs are functioning. The exact tests will depend on your child’s medication and individual circumstances. If a result is outside the expected range, it doesn’t automatically mean that something is seriously wrong. Your healthcare team will look at the result in context and decide whether anything needs to be repeated, investigated or acted upon. 💊 Monitoring IBD medications Different medications require different types of monitoring. Some medicines may require more frequent blood tests when they are first started, while monitoring may become less frequent once treatment is established. Your child’s healthcare team may monitor: blood cell counts liver function kidney function inflammatory markers nutritional markers medication-specific safety markers infection risk or previous infections, when relevant. The exact monitoring plan depends on the medication, dose, age of your child and their health history. Immunomodulators Medicines such as azathioprine, 6-mercaptopurine and methotrexate can require regular blood monitoring. For example, monitoring may include blood counts and liver tests because these medicines can affect blood cells or the liver. Your child’s IBD team will tell you which tests are needed and how frequently they should be done. Biologics and biosimilars Biologic medicines and biosimilars may also involve monitoring. Depending on the treatment, your child’s team may check blood tests, infection risk and inflammatory markers and may sometimes use medication levels or antibody testing when clinically appropriate. Not every child needs every test. Steroids Corticosteroids such as prednisone or prednisolone are generally used to control active inflammation rather than as a long-term maintenance treatment. When steroids are used, your child’s healthcare team may monitor their response and watch for treatment-related effects. Never change or stop a steroid suddenly unless your child’s healthcare team has given you a specific plan. 🦠 Why are infection tests sometimes done before medication? Before starting some IBD treatments, your child’s healthcare team may check for certain infections or previous exposure to infections. Depending on the medication and your child’s circumstances, this can include screening for infections such as tuberculosis or hepatitis B . This helps the healthcare team assess risks before starting treatment and decide whether any additional precautions are needed. 💩 What about faecal calprotectin? Blood tests aren’t the only way to monitor IBD. Faecal calprotectin is a stool test that can provide information about inflammation in the digestive tract. Your child’s IBD team may use it alongside blood tests and symptoms to monitor Crohn’s disease or ulcerative colitis. For many families, stool testing becomes part of routine IBD monitoring because it can provide information specifically related to inflammation in the gastrointestinal tract. 📈 What does it mean if my child’s results change? It’s completely normal to feel worried when you see a result marked outside the laboratory’s reference range. But one abnormal result does not necessarily mean that your child’s IBD is getting worse or that their medication isn’t working. Your child’s team will consider: previous results current symptoms bowel habits blood or mucus in stools abdominal pain energy levels appetite weight and growth faecal calprotectin medication recent infections or illness other relevant tests. Trends can be more useful than looking at one number on its own. If you’re unsure what a result means, ask your child’s IBD team to explain it. 🔄 Why do doctors repeat the same blood tests? You may notice that your child has the same blood tests again and again. That’s often intentional. Repeating tests allows the healthcare team to see whether things are: Improving → staying stable → changing → or needing further investigation. For example, your child’s team may compare inflammatory markers from several appointments rather than making a treatment decision based on one result. Regular monitoring can also help identify medication-related problems early. 📅 How often will my child need blood tests? There isn’t one schedule that applies to every child with IBD. Testing frequency can depend on: the medication your child takes whether treatment has recently started or changed whether your child is having a flare previous blood test results other health conditions your child’s age local clinical guidelines and healthcare practices. Your IBD team should tell you when your child’s tests are due. If you’re unsure, ask: “When is my child’s next blood test due, and what are we monitoring?” 📋 Keep a record of your child’s results You don’t need to become an expert in every blood test. However, keeping a simple record can help you see changes over time and make appointments easier. You could keep track of: date of blood test CRP ESR haemoglobin ferritin iron studies liver tests kidney tests other medication-specific tests faecal calprotectin your child’s symptoms at the time. You can ask your IBD team which results are most useful for you to keep track of. 💬 Questions to ask your IBD team At your child’s next appointment, you could ask: Which blood tests does my child need? What is each test checking? Which results are most important for my child’s IBD? What were my child’s previous results? Are their results improving, stable or changing? Does my child’s medication require regular monitoring? How often should their blood tests be done? Does my child need faecal calprotectin testing too? What should we do if a result is abnormal? Who should we contact if we have questions about a result? When should the next tests be done? ❤️ Remember: the numbers are only part of the picture It can be tempting to focus on individual numbers when you’re looking at your child’s blood results. But IBD monitoring is about looking at the whole picture . Your child’s symptoms, growth, energy, bowel habits, blood tests, stool tests and other investigations all help their healthcare team understand how their Crohn’s disease or ulcerative colitis is behaving. And if you don’t understand a result, ask . You don’t need to know what every number means before your child’s appointment. Your IBD team can explain what the results mean for your child and whether anything needs to change. 🌍 A note about medication monitoring Medication monitoring can vary between medicines, children and countries. Different healthcare systems may use different testing schedules, laboratory reference ranges and monitoring protocols. Always follow the monitoring plan provided by your child’s own IBD team. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Flares How to help your child through a difficult flare How to support your child through a difficult IBD flare, including Crohn’s disease and ulcerative colitis symptoms, food, fluids, rest, school and emotional wellbeing. Watching your child go through an IBD flare can be one of the hardest parts of living with Crohn’s disease or ulcerative colitis. They may be in pain, exhausted, running to the toilet, missing school or activities, eating less and feeling frustrated that their body isn’t cooperating. And as a parent, you may feel like you want to make it better immediately. While your child’s IBD team is responsible for assessing and treating active inflammation, there are many things you can do to help your child feel safer, more comfortable and supported while they recover. ❤️ Start with reassurance A difficult flare can be frightening for a child. They may wonder: “Why is this happening again?” “Am I going to get better?” “Will I have to go to hospital?” “Will I be able to go back to school?” Try to keep your explanations simple and reassuring. You might say: “Your IBD is having a difficult time at the moment. We’re going to work with your doctors to help you feel better.” Remind them that the flare is not their fault . They didn’t cause their IBD, and they aren’t doing anything wrong. 🩺 Stay connected with the IBD team If your child’s symptoms are getting worse, don’t feel that you have to manage everything at home. Contact their IBD team and let them know what is happening. They may want to assess: How often your child is having bowel movements Whether there is blood or mucus Abdominal pain Appetite and food intake Weight changes Hydration Energy levels Fever Medication use Whether tests such as blood tests or faecal calprotectin are needed Your child’s treatment may need to be reviewed during a significant flare. Don’t change, stop or increase IBD medication unless your child’s healthcare team advises you to. 💧 Focus on fluids Frequent diarrhoea and vomiting can cause children to lose fluids and electrolytes. Encourage your child to drink regularly, particularly if they are having frequent bowel movements. Depending on your child’s age and medical advice, this may include: Water Oral rehydration solutions Other fluids recommended by their healthcare team If your child is struggling to drink, vomiting repeatedly, passing very little urine or showing signs of significant dehydration, seek medical advice urgently. Your child’s IBD team may have specific hydration advice for them, particularly during a severe flare. 🍽️ Keep food simple and manageable There is no single IBD flare diet that works for every child. During a flare, some children find that large meals are difficult, while smaller, more frequent meals are easier. Your child may temporarily prefer foods that feel more comfortable for them. The important thing is to avoid unnecessarily restricting their diet without guidance from their healthcare team or an IBD dietitian. Try to focus on: Foods your child can comfortably tolerate Regular opportunities to eat Enough fluids Adequate energy and protein Their individual nutritional needs If your child is eating very little, losing weight or struggling to maintain growth, speak with their IBD team or dietitian. 🥣 Don’t create a long list of “forbidden foods” When a child is already worried about their body, it can be easy for food to become another source of anxiety. You may notice that certain foods seem to make symptoms worse. Keeping a simple food and symptom record can help you identify patterns. But remember that a food causing symptoms does not necessarily mean it is causing inflammation . Some foods may temporarily worsen symptoms without causing an IBD flare. Before removing major food groups or putting your child on a restrictive diet, talk to their IBD team or a dietitian experienced in paediatric IBD. 🚽 Make the bathroom easier When your child is having frequent diarrhoea or urgency, getting to the toilet quickly can become a huge part of their day. You can help by: Making sure the bathroom is easy to access Keeping spare underwear and clothes nearby Having wipes or toilet paper available Using a gentle barrier cream if recommended for sore skin Keeping the bathroom warm and comfortable Giving your child privacy when they need it f accidents happen, try to respond calmly. Your child may already feel embarrassed or upset. A simple: “It’s okay. These things happen when your tummy is unwell.” can make a big difference. 🛋️ Let them rest Fatigue is a common IBD symptom and can become particularly difficult during a flare. Your child may need more rest than usual. That doesn’t mean they have to stay in bed all day. Instead, let their energy guide the day. They might: Sleep more Read Watch a movie Play quietly Draw Listen to music Spend time with family Do a small amount of schoolwork when they feel able There is no prize for pushing through a flare. Rest is part of taking care of an unwell body. 🏃 Don’t pressure them to exercise Physical activity can be a normal and important part of life with IBD, but a difficult flare is not the time to pressure your child to keep up with their usual activities. If they’re exhausted or experiencing significant abdominal symptoms, give them permission to slow down. Once they’re feeling better, they can gradually return to their usual activities based on advice from their healthcare team. 🏫 Talk to the school A difficult flare can affect much more than your child’s physical health. They may miss school, struggle to concentrate or worry about having an accident in front of classmates. Speak with the school about what your child needs. This might include: Easy access to toilets Permission to leave class without waiting Reduced workload temporarily Extra time for assignments Flexibility around attendance Rest breaks Support catching up after absences Understanding from teachers about fatigue Your child doesn’t necessarily need to explain their IBD to everyone. Work with them to decide who needs to know and what information they are comfortable sharing. 📚 Don’t make school the priority during a severe flare It’s understandable to worry about missed work. But when your child is experiencing significant IBD symptoms, their health comes first. Trying to complete a full school day while dealing with pain, diarrhoea and extreme fatigue can be exhausting. Ask the school about a temporary plan rather than expecting your child to simply catch up later. Sometimes a small amount of schoolwork completed when they feel well is enough. 💬 Give them some control IBD can make children feel like their bodies are making all the decisions. Small choices can help restore a sense of control. Let your child choose: What comfortable clothes to wear Which foods they would like to try Where they would like to rest What activity they feel up to Who they want around them Whether they want to talk about their IBD For older children and teenagers, involve them in conversations with their healthcare team as much as possible. Even small decisions can help them feel more independent. 🧠 Look after their emotional wellbeing A difficult flare can affect your child’s mood as well as their body. They may feel: Frustrated Embarrassed Angry Sad Worried Lonely Different from their friends Frightened about another flare Tired of appointments and medications You don’t have to solve every feeling. Sometimes listening is enough. Try: “That sounds really hard.” rather than: “Don’t worry, you’ll be fine.” Giving your child space to be upset without immediately trying to fix it can help them feel understood. If your child’s mood, anxiety or behaviour is becoming a significant concern, talk to their IBD team about additional psychological support. 🤝 Keep life feeling normal where possible When your child is flaring, it can feel like the whole family’s life revolves around IBD. Try to keep small pieces of normal life going. Watch their favourite movie. Play a game. Sit outside. Talk about something completely unrelated to IBD. Have a sibling movie night. Let them know that they are still your child first — not just someone with IBD. 📝 Keep track of what’s happening During a difficult flare, it’s easy to lose track of symptoms. A simple record can help you and your IBD team understand how things are changing. You could record: Bowel movements Blood or mucus Abdominal pain Urgency Vomiting Temperature Fluids Appetite Energy Weight, if advised Medications Other symptoms You don’t need to record everything forever. The goal is to identify changes and give your healthcare team useful information. 💊 Keep medications organised When your child is unwell, medication routines can become more difficult. Try to keep a clear record of: What medications they take When they take them Any recent changes Missed doses Side effects Questions for the IBD team If you’re unsure whether your child should take a medication during a flare, illness or vomiting, contact their healthcare team or pharmacist. Don’t make medication changes on your own. 🚨 Know when a difficult flare needs urgent help A difficult flare isn’t necessarily an emergency. But seek urgent medical attention if your child has symptoms such as: Severe or rapidly worsening abdominal pain Heavy or ongoing rectal bleeding Repeated vomiting or inability to keep fluids down Significant dehydration Fainting or severe dizziness A very swollen or unusually tender abdomen Extreme weakness or difficulty staying awake A high or persistent fever with your child appearing very unwell A significant change in alertness or behaviour If you believe your child is seriously unwell, seek emergency medical care rather than waiting for the IBD team to respond. What if you feel overwhelmed too? Looking after a child through a difficult flare can be exhausting. You may be: Worrying about every symptom Sleeping poorly Trying to manage medications Communicating with school Rearranging work Caring for siblings Travelling to appointments Trying to keep your child calm It’s okay to ask for help. If someone offers to bring dinner, pick up another child, sit with your child or make a phone call, let them help if you can. You don’t have to manage every part of an IBD flare yourself. ❤️ Remember: this won’t always be how things feel When your child is in the middle of a difficult flare, it can be hard to imagine them feeling like themselves again. But a flare is a period of active disease — it isn’t your child’s whole life. Work with their IBD team, focus on what your child needs today and take things one step at a time. Your job isn’t to fix the IBD. Your job is to help your child feel safe, supported and cared for while their healthcare team works with you to manage their treatment. You don’t have to get through the whole flare today. Just focus on the next step. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Food & Nutrition Nutrition and growth in children with IBD How Crohn’s disease and ulcerative colitis can affect weight, height, puberty and nutritional needs, including iron, vitamin D, protein and energy, when to see an IBD dietitian and how to support healthy growth. When a child has Crohn’s disease or ulcerative colitis, nutrition is about much more than what they eat. Children are growing. They need enough energy, protein, vitamins and minerals not only to feel well today, but also to support healthy growth, puberty, bone health and development. This is why nutrition and growth are an important part of paediatric IBD care . Children with IBD may be at risk of nutritional deficiencies, poor weight gain or slowed growth, particularly when inflammation is active. Paediatric IBD experts recommend regular nutritional and growth assessment as part of care. 📈 Why is growth so important in children with IBD? Adults have reached most of their physical growth. Children haven’t. Active IBD can affect a child’s ability to grow in several ways. For example: inflammation can increase the body’s nutritional demands abdominal pain or nausea can reduce appetite diarrhoea can make eating difficult some children become afraid to eat because they associate food with symptoms nutrients may not be absorbed normally in some children children may eat less during a flare ongoing inflammation can affect normal growth and development. Growth can therefore provide important information about how your child’s IBD is affecting their overall health. 🧒 What does the IBD team monitor? Your child’s healthcare team may regularly look at: weight height or length body mass index (BMI), when appropriate growth over time growth compared with other children of the same age and sex puberty and development appetite and food intake nutritional deficiencies disease activity. The important thing isn’t necessarily whether your child is the biggest or smallest child in their class. It’s the pattern over time. Your child’s team may plot their measurements on a growth chart to see whether they are following their expected growth pattern. ⚖️ What if my child is losing weight? Weight loss can happen during an IBD flare, particularly when a child has diarrhoea, abdominal pain or a poor appetite. But unexplained or ongoing weight loss should be discussed with your child’s IBD team. They may want to look at: how much your child is eating their symptoms disease activity blood tests faecal calprotectin nutritional deficiencies medication growth pattern. Sometimes the most important step isn’t simply adding more calories. If active inflammation is preventing your child from growing normally, controlling the underlying IBD is also an important part of supporting growth. 📏 What if my child isn’t growing as expected? Some children with paediatric IBD may have growth delay . This can sometimes be one of the signs that inflammation has been affecting their body for some time. Your child’s gastroenterology team may look at their growth over several appointments rather than focusing on one measurement. They may also consider: parental height and expected growth pattern puberty stage nutritional intake disease activity inflammation medication other possible causes of poor growth. If your child is falling away from their previous growth pattern, ask their IBD team about it. 🍽️ How much should my child eat? There isn’t one calorie target that is right for every child with IBD. Nutritional requirements depend on factors such as: age sex height and weight activity level stage of growth puberty disease activity nutritional status individual medical needs. Children with active IBD may have increased nutritional needs. Rather than trying to calculate your child’s requirements yourself, ask your IBD team or paediatric dietitian for personalised advice. 🥚 Protein matters Protein is important for: growth muscle development tissue repair maintaining strength recovery from illness. Good sources can include: eggs fish chicken meat yoghurt cheese milk or suitable alternatives tofu beans and lentils nuts and nut butters. Your child doesn’t need to eat every one of these. The goal is to include protein-rich foods that your child can tolerate and enjoys . 🥑 Energy matters too A child who is struggling to gain weight may need more energy without necessarily needing much larger meals. Depending on what they tolerate, energy can sometimes be increased by adding foods such as: avocado olive oil nut butter full-fat dairy or suitable alternatives eggs smoothies nutritional supplements recommended by their healthcare team. A paediatric dietitian can help you increase nutritional intake without making meals overwhelming. 🧲 Iron and other nutritional deficiencies Children with IBD can develop nutritional deficiencies. Your child’s team may monitor nutrients such as: iron ferritin vitamin D vitamin B12 folate zinc calcium. Iron deficiency and anaemia are particularly important to monitor because they can contribute to tiredness, weakness and difficulty concentrating. Your child’s blood results should be interpreted in the context of their overall health and inflammation. Don’t start high-dose supplements without discussing them with your child’s healthcare team. The right supplement and dose depend on your child’s age, blood results, diet and medical treatment. 🦴 Bone health Bone health is another important consideration for children with IBD. Growing children need adequate nutrition, calcium and vitamin D to support healthy bones. Your child’s healthcare team may pay particular attention to bone health if they have: ongoing active inflammation nutritional deficiencies poor growth low weight limited dietary intake prolonged or repeated corticosteroid treatment. Your child’s team can advise whether they need additional monitoring or supplementation. 🌱 Puberty and IBD Growth isn’t only about height. Puberty is also an important part of healthy development. Active IBD and poor nutritional status can sometimes contribute to delayed puberty. If your child appears to be developing later than expected, mention this to their IBD team. They can assess your child’s growth and development and decide whether further evaluation is needed. 🔥 What happens to nutrition during a flare? During an IBD flare, eating can become difficult. Your child may have: diarrhoea abdominal pain nausea reduced appetite urgency fatigue weight loss. They may naturally eat less because they don’t feel well. During this time, focus on fluids, nutrition and foods your child can comfortably tolerate . Smaller, more frequent meals can sometimes be easier than large meals. Some children temporarily tolerate softer or lower-fibre foods better, while others can continue eating a broad diet. There isn’t one flare diet that works for every child. 🚫 Should I put my child on a restrictive diet? Be careful with restrictive diets. It can be tempting to remove dairy, gluten, sugar, fruit, vegetables or other foods because you’ve heard that they might “cause inflammation”. But unnecessarily removing food groups can make it harder for a growing child to meet their nutritional needs. A food that causes symptoms also isn’t necessarily causing the underlying IBD inflammation. If you’re considering an elimination diet or major dietary change, discuss it with your child’s IBD team or an IBD-focused paediatric dietitian first. 🥤 What if my child can’t eat enough? If your child is struggling to meet their nutritional needs through normal meals, their healthcare team may recommend additional nutritional support. This could include: oral nutritional supplements additional snacks fortified foods dietitian-guided meal plans enteral nutrition. For some children with Crohn’s disease , exclusive enteral nutrition (EEN) may be used as a treatment to induce remission. This is a specialised medical nutrition therapy and should only be undertaken with guidance from the child’s IBD team and dietitian. Paediatric IBD nutrition guidance recognises nutritional therapy as an important part of managing some children with IBD. 💬 When should I ask to see a dietitian? You don’t have to wait until your child’s nutrition becomes a major problem. Ask about a paediatric or IBD-focused dietitian if your child: is losing weight isn’t growing as expected has a poor appetite is eating very little avoids many foods has nutritional deficiencies has ongoing diarrhoea struggles to eat during flares needs nutritional supplements is following a specialised diet has concerns about food or eating. A dietitian can help make sure dietary changes don’t unintentionally leave gaps in your child’s nutrition. ❤️ Nutrition isn’t about perfection Your child doesn’t need to eat a “perfect” diet. There will be days when they eat very well and days when they don’t. There will be birthday parties, school lunches, takeaway meals, holidays and days when the safest food is simply the food your child can manage. What matters most is the overall picture over time . The goal is to support your child’s: Growth. Nutrition. Energy. Bone health. Puberty and development. IBD treatment. Relationship with food. Quality of life. 📋 Questions to ask your child’s IBD team At your next appointment, you could ask: Is my child’s growth tracking as expected? Has their growth pattern changed since their IBD symptoms started? Is their weight where you would expect it to be? Are they getting enough calories and protein? Should we see an IBD dietitian? Does my child need blood tests for nutritional deficiencies? Should we check iron and ferritin? What about vitamin D, calcium, B12, folate or zinc? Is my child’s puberty and development progressing normally? Does their current treatment support healthy growth? Should we be doing anything differently with their diet? Would nutritional supplements be helpful? When should we check their growth again? 🌟 The takeaway Nutrition is a core part of caring for children with IBD . If your child has Crohn’s disease or ulcerative colitis, their healthcare team should consider not only their symptoms and inflammation, but also their growth, nutritional status and development. You don’t need to figure out your child’s nutritional needs alone. If you’re worried about weight, growth, food intake or nutritional deficiencies, speak with your child’s IBD team and ask whether an IBD-focused paediatric dietitian can help. Supporting nutrition isn’t about finding the perfect diet. It’s about helping your child grow, develop, feel well and live as normally as possible while their IBD is being treated. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Food & Nutrition Food and IBD: What parents need to know What parents need to know about food and nutrition with Crohn’s disease and ulcerative colitis, including food triggers, restrictive diets, special IBD diets, nutritional deficiencies, growth and when to see a paediatric IBD dietitian. Food can become one of the biggest sources of worry after a child is diagnosed with Crohn’s disease or ulcerative colitis. You might wonder: “Is there a diet my child should follow?” “Which foods are causing their symptoms?” “Should we stop dairy or gluten?” “Can food cause an IBD flare?” The short answer is that there is no single IBD diet that works for every child . Food can affect symptoms, appetite and nutrition, but it is important to separate symptoms from inflammation. A food that makes your child feel worse doesn’t necessarily mean it is causing their IBD or an IBD flare. For children, nutrition is particularly important because they are still growing and developing. 🍽️ Food and nutrition are not the same thing It can help to think about two different things: Diet is what your child eats. Nutrition is whether their body is getting and absorbing enough energy, protein, vitamins and minerals to support health and growth. A child can eat what appears to be a healthy diet but still have nutritional deficiencies or not be getting enough energy. IBD can make nutrition more complicated because inflammation, reduced appetite, diarrhoea and some treatments can all affect nutritional needs. 🌱 Does food cause IBD? No. Parents sometimes worry that something their child ate caused their Crohn’s disease or ulcerative colitis. There is currently no evidence that a particular food or something your child ate caused their IBD. It is also important not to blame yourself or your child’s diet. IBD is a complex condition involving factors such as the immune system, genetics and the environment. 🔥 Can food cause an IBD flare? Food and IBD can be complicated. A particular food may make your child’s symptoms worse without causing the underlying inflammation. For example, your child might notice more: diarrhoea bloating abdominal discomfort urgency gas nausea after eating certain foods. That doesn’t automatically mean the food has caused an IBD flare. Active intestinal inflammation needs to be assessed by your child’s healthcare team using the overall picture, which may include symptoms, blood tests, faecal calprotectin and other investigations. 🥗 What should my child eat? When IBD is well controlled, the aim is generally to provide a varied, nutritious diet that supplies enough energy and nutrients for growth. Depending on your child’s individual needs and tolerance, this can include: 🍎 Fruit and vegetables These provide vitamins, minerals and fibre. Some children may tolerate certain fruits and vegetables better than others, particularly during a flare. Changing the texture, preparation or portion size can sometimes make foods easier to tolerate. 🍞 Grains and carbohydrates Bread, rice, pasta, oats, cereals and potatoes can provide important energy. There is no reason to automatically remove gluten or grains unless your child’s healthcare team has identified a specific reason. 🥚 Protein Protein supports growth and tissue repair. Sources can include: eggs fish chicken meat yoghurt dairy or suitable alternatives tofu beans and lentils nuts and nut butters. 🥑 Healthy fats Foods such as avocado, olive oil, nuts, seeds and oily fish can provide energy and important nutrients, depending on your child’s tolerance. For children struggling to maintain their weight, energy-dense foods can be particularly useful. 🚫 Does my child need to avoid dairy? Not necessarily. Some children with IBD tolerate dairy without any problems. Others may have lactose intolerance , particularly around periods of active symptoms. If dairy seems to cause problems, speak with your child’s IBD team or dietitian before removing it permanently. If dairy is removed, you’ll also need to consider where your child will get enough: calcium vitamin D protein energy. Removing a food is only part of the solution. Replacing the nutrients is just as important. 🌾 What about gluten? There is no general recommendation that all children with IBD should avoid gluten. If your child has coeliac disease or another specific reason to avoid gluten, their healthcare team can help you manage this safely. Otherwise, removing gluten without a clear reason can unnecessarily restrict the diet and make it harder to meet nutritional needs. 🍬 What about sugar and processed foods? You may see claims online that sugar or processed foods “cause inflammation” or that eliminating them can cure IBD. The evidence is more complicated than that. Research is continuing into how different dietary patterns, ultra-processed foods, additives and other dietary factors may influence IBD. At present, there isn’t evidence that one specific food can be identified as the cause of IBD inflammation in every child. For children, it is usually more helpful to focus on the overall pattern of eating rather than becoming frightened of individual foods. 🔄 What about special IBD diets? You may come across diets such as: the Crohn’s Disease Exclusion Diet (CDED) Specific Carbohydrate Diet (SCD) IBD-AID Mediterranean-style diets low-FODMAP diets exclusive enteral nutrition (EEN). Some dietary approaches have been studied in IBD, and certain nutrition therapies may be recommended for specific children. But they are not interchangeable , and they aren’t appropriate for every child. Some can also be quite restrictive. For example, exclusive enteral nutrition is a specialised nutritional treatment that can be used in some children with Crohn’s disease under medical and dietetic supervision. Other dietary approaches may have different evidence and purposes. If you’re considering a specialised IBD diet, speak with your child’s gastroenterology team or an IBD-focused paediatric dietitian first. ⚠️ Be careful with restrictive diets When your child is unwell, it can be tempting to keep removing foods until you find something that seems “safe”. But children need enough nutrition to grow. Restrictive diets can increase the risk of: inadequate calorie intake vitamin and mineral deficiencies weight loss poor growth reduced bone health anxiety around food disordered eating. For this reason, significant dietary restrictions should ideally be planned with a healthcare professional who understands paediatric IBD. 📝 Could a food diary help? Sometimes. A simple food and symptom diary can help identify patterns. You could record: Food: What did my child eat? Symptoms: What happened afterwards? Bowel movements: How often? Any blood or mucus? Pain: Was there abdominal pain or cramping? Appetite: Were they hungry or eating less? Other: Energy, nausea, urgency or bloating. Try to look for repeated patterns , rather than assuming that one difficult day means a particular food is a trigger. And remember: a food diary should be a tool for understanding your child’s symptoms — not a reason to become afraid of food. 🔥 What changes during a flare? Your child’s diet may need to change temporarily when their IBD is active. During a flare, some children find that: smaller meals are easier softer foods are easier to tolerate certain high-fibre foods cause more symptoms greasy or fried foods worsen symptoms some dairy products become harder to tolerate drinking enough fluids becomes particularly important. But not every child needs the same changes. Our guide Eating during an IBD flare can help you understand how food, fluids and nutrition may be managed when symptoms are active. 📈 Keep an eye on growth For children with IBD, food isn’t just about managing symptoms. It’s about growth . Your child’s healthcare team may monitor: weight height growth pattern appetite nutritional intake iron and other nutrients puberty and development. If your child is losing weight, falling away from their usual growth pattern or struggling to eat enough, tell their IBD team. Nutrition problems can sometimes be an indication that your child’s IBD needs closer assessment. 🧲 What about vitamins and supplements? Some children with IBD may develop nutritional deficiencies. Depending on your child’s situation, their healthcare team may check things such as: iron and ferritin vitamin D vitamin B12 folate calcium zinc. Your child may need supplements if they have a confirmed deficiency or increased nutritional needs. But more isn’t always better. Don’t start high-dose vitamins, minerals or herbal supplements without discussing them with your child’s healthcare team. Some supplements can interact with medications, and the right dose depends on your child’s age, weight, diet and blood results. 🧒 Help your child have a healthy relationship with food IBD can make children feel like food is something they have to be afraid of. They may worry about: needing the toilet after eating having an accident at school developing abdominal pain eating something “wrong” being different from their friends. Where possible, try to keep food positive and normal. Let your child: help choose meals participate in shopping prepare food eat with friends enjoy birthday parties choose foods they tolerate learn about their own symptoms without becoming fearful of food. Food is part of childhood, culture, family and social life — not just nutrition. 🍕 What about restaurants, parties and holidays? Your child doesn’t need to miss out on every social event involving food. Planning ahead can help. You might: check the menu beforehand bring a familiar food if necessary make simple adjustments to meals pack snacks ensure your child has access to fluids make sure they know where the toilets are. The aim is to help your child participate rather than making food another reason to stay home. 💬 When should I see a dietitian? Ask your child’s IBD team about an IBD-focused paediatric dietitian if your child: is losing weight isn’t growing as expected has a poor appetite avoids many foods has nutritional deficiencies struggles to eat during flares needs nutritional supplements is following a restrictive diet has suspected food intolerances is becoming anxious or fearful around food. A dietitian can help you make dietary changes while protecting your child’s nutritional needs. ❤️ The big picture There is no perfect food list for children with IBD. Your child may have foods they tolerate well and foods that make their symptoms worse. Those can change over time. The goal isn’t to create a diet where your child can only eat a handful of “safe” foods. It’s to help them have enough variety, enough nutrition and enough flexibility to grow, develop and enjoy life. Remember: Food can affect symptoms without causing IBD. There is no universal IBD diet for every child. Restrictive diets can create nutritional problems. Growth and nutrition are just as important as symptom control. Your child’s IBD team and dietitian can help you work out what is right for them. 🌟 Most importantly If food has become stressful in your home since your child’s IBD diagnosis, you don’t have to figure it out alone. Ask your child’s IBD team for help. A personalised nutrition plan can take into account your child’s Crohn’s disease or ulcerative colitis, symptoms, growth, nutritional needs, treatment, food preferences and family life . The goal isn’t to make your child’s diet perfect. It’s to help your child eat, grow, feel well and be a kid. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Growth & Puberty IBD, growth and weight: What parents should know How Crohn’s disease and ulcerative colitis can affect weight, height, puberty and nutrition, what changes to watch for, and when to speak with your child’s IBD team. Is your child’s weight changing, or are you worried they aren’t growing as expected? Growth and weight are important parts of looking after children with IBD — but there is no single “right” weight for a child with Crohn’s disease or ulcerative colitis. Children grow at different rates, and one measurement on its own rarely tells the whole story. Your child’s healthcare team will usually look at their growth pattern over time, along with their symptoms, nutrition, puberty and how well their IBD is controlled. 🌱 Why does IBD affect growth and weight? Active IBD can make it harder for some children to maintain healthy growth and weight. This can happen for several reasons, including: reduced appetite during an IBD flare tummy pain, nausea or diarrhoea making eating difficult increased nutritional needs when inflammation is active nutrients being lost through diarrhoea or bleeding difficulty absorbing nutrients, particularly with some forms of Crohn’s disease avoiding foods because eating has become associated with pain or urgency side effects from some medications ongoing inflammation affecting the body’s normal growth processes. Not every child with IBD will experience growth or weight problems. Some children continue to grow normally throughout their illness. 📈 What does healthy growth look like? For children, growth is about much more than weight. Your healthcare team may monitor: weight height or length growth velocity — how quickly your child is growing BMI, when appropriate growth pattern over time puberty and development appetite and food intake nutritional deficiencies IBD activity and inflammation. Rather than focusing on one number, doctors usually look at the pattern over time. For example, a child who has always been smaller than their peers but continues to grow steadily may be very different from a child whose weight or height has recently stopped progressing. ⚖️ What if my child is losing weight? Unintentional weight loss can happen during an IBD flare, particularly if your child is eating less or experiencing significant diarrhoea, pain or other symptoms. If you notice that your child is: losing weight without trying eating much less than usual struggling to maintain their usual intake becoming increasingly tired or weak having frequent diarrhoea or vomiting experiencing ongoing abdominal pain falling away from their usual growth pattern let their IBD team know. Weight loss doesn’t automatically mean your child is having an IBD flare, but it is important to look at the possible causes. Your child’s team may consider symptoms, blood tests, faecal calprotectin, nutritional intake and other investigations to work out what is happening. ⚖️ What if my child is gaining weight? Weight gain can also be part of childhood and puberty, and it isn’t necessarily a sign that something is wrong. Some children with IBD may gain weight quickly after inflammation is brought under control and their appetite improves. Certain treatments can also affect appetite, fluid balance or weight. For example, corticosteroids can increase appetite and may cause changes in body composition while they are being used. If you are concerned about your child’s weight, talk with their healthcare team rather than putting them on a restrictive diet. Children with IBD still need enough energy and nutrients to support growth, development and healing. 📏 Growth can be affected even when weight looks okay It’s possible for a child’s weight to appear relatively stable while their height growth slows. This is one reason your child’s healthcare team may track both height and weight over time. Slower height growth can sometimes be associated with ongoing inflammation, inadequate nutrition or delayed puberty. If your child isn’t growing as expected, the IBD team may want to investigate whether inflammation is adequately controlled and whether they are getting enough energy, protein and essential nutrients. 🧑🦱 What about puberty? IBD can sometimes affect the timing of puberty, particularly when inflammation has been active for a long time or nutritional needs aren’t being met. Your child’s healthcare team may monitor puberty alongside their growth. If you’re concerned that puberty seems delayed, your child’s height isn’t progressing as expected, or their development seems different from their peers, mention it at an appointment. There can be many reasons for differences in puberty timing, so it doesn’t necessarily mean that IBD is the cause. 🥦 Could nutritional deficiencies affect growth? Children with IBD can be at risk of nutritional deficiencies, particularly when disease is active or food intake is limited. Depending on your child’s situation, their healthcare team may monitor nutrients such as: iron and ferritin vitamin D vitamin B12 folate calcium zinc other vitamins and minerals where appropriate. Iron deficiency can be particularly important because it may contribute to tiredness and anaemia. Your child’s IBD team or dietitian can advise whether blood tests or supplements are appropriate. 🍽️ Should I try to make my child gain weight? If your child is struggling to maintain weight, it can be tempting to encourage them to eat as much as possible. But simply adding more food isn’t always the answer. The reason for poor weight gain needs to be understood first. For example, if your child has active intestinal inflammation, significant pain or ongoing diarrhoea, increasing food alone may not solve the underlying problem. Your IBD team may recommend: increasing energy and protein in meals smaller, more frequent meals high-energy snacks nutritional drinks or supplements specific nutrition strategies treatment to control active IBD referral to a paediatric IBD dietitian. Some children with Crohn’s disease may also be offered exclusive enteral nutrition (EEN) or another specialised nutritional approach as part of their IBD treatment. These treatments should only be undertaken with guidance from the child’s IBD team and dietitian. 🥗 Should I put my child on a diet if they’re gaining too much weight? This is something to discuss with your child’s healthcare team before making significant changes to their diet. Restrictive diets can make it harder for children with IBD to get the energy, protein, vitamins and minerals they need. Instead of focusing only on the number on the scales, the team may look at your child’s overall growth pattern, nutrition, activity, puberty and IBD activity. A paediatric IBD dietitian can help your family make changes that support both healthy growth and good nutrition . 🏠 What can I do at home? You don’t need to weigh your child every day. In fact, frequent weighing can sometimes create unnecessary worry, particularly for older children and teenagers. Instead: 🔎 Keep an eye on the bigger picture Notice changes in: appetite energy levels eating patterns bowel habits abdominal pain weight or clothing fit height and growth activity levels mood and wellbeing. ❤️ Keep meals positive Try to avoid making weight the focus of family meals. Children with IBD can already develop anxiety around food, particularly if eating has previously caused pain or urgency. Aim to make food as relaxed and enjoyable as possible. 🚫 Don’t unnecessarily restrict foods Removing large numbers of foods without professional guidance can increase the risk of nutritional deficiencies. If you think particular foods are causing symptoms, keep a simple food and symptom record and discuss the pattern with your child’s IBD team or dietitian. 💊 Follow the treatment plan Good nutrition is important, but food cannot replace treatment for active intestinal inflammation. Continue your child’s prescribed IBD treatment and speak with their healthcare team if you think their symptoms are returning. 📞 When should I speak with the IBD team? Contact your child’s IBD team if you notice: unexplained weight loss poor weight gain a noticeable change in appetite slowing or stopping of height growth ongoing diarrhoea persistent abdominal pain increasing fatigue vomiting blood in the stool difficulty eating because of pain or fear significant food restriction concerns about delayed puberty concerns about your child’s relationship with food or body image. Your child’s team can help work out whether the change is related to IBD activity, nutrition, medication, another medical issue or normal childhood growth. 🌱 Remember: growth is a journey Every child has their own growth pattern. With IBD, your child’s healthcare team will usually look at growth, weight, nutrition, puberty and inflammation together , rather than relying on a single measurement. If your child’s weight or growth changes, don’t panic — but don’t ignore it either. Let the IBD team know so they can look at the bigger picture and decide whether anything needs to be investigated. With appropriate IBD treatment, nutrition support and regular monitoring, many children with Crohn’s disease or ulcerative colitis can continue to grow, develop and take part in everyday life. 💛 You don’t have to work out your child’s growth or nutrition needs on your own. Your IBD team and paediatric IBD dietitian are there to help. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Growth & Puberty IBD and puberty How Crohn’s disease and ulcerative colitis can affect growth, puberty, nutrition and periods, what to watch for, and when to speak with your child’s IBD team. Is your child going through puberty later than their friends, or are you wondering whether IBD could affect their development? Puberty is a time of major physical, emotional and social change. For children with Crohn’s disease or ulcerative colitis, puberty can sometimes happen later than expected, particularly when IBD has been active or difficult to control. This can understandably be worrying for both children and parents. The good news is that delayed puberty does not necessarily mean something is permanently wrong . With appropriate IBD treatment, nutrition and monitoring, many children continue through puberty and reach their expected growth and development. 🌱 Can IBD affect puberty? It can. Active IBD may affect puberty in several ways. Ongoing inflammation can increase the body’s nutritional and energy needs, while symptoms such as abdominal pain, diarrhoea and poor appetite can make it difficult for a child to eat enough. When the body is dealing with ongoing inflammation or isn’t getting enough energy and nutrients, growth and puberty can sometimes slow down. This is more commonly associated with Crohn’s disease , but children with ulcerative colitis can also experience growth or pubertal difficulties. Your child’s IBD team will consider their individual growth pattern, nutritional status, inflammation and stage of puberty rather than looking at one measurement alone. 📏 What is delayed puberty? Children enter puberty at different ages, so there is a wide range of normal development. Doctors may consider puberty to be delayed when the expected physical changes have not started by a particular age. The age at which this becomes a concern differs between boys and girls. It’s also important to remember that being later than friends does not automatically mean puberty is medically delayed . Some children simply mature later than others, particularly if there is a family history of later puberty. Your child’s doctor can assess whether their development is within the expected range. 👀 What signs of puberty should parents look for? Puberty looks different for every child and doesn’t happen in exactly the same order or at the same speed. Depending on your child’s age and sex, changes can include: growth in height changes in body shape breast development in girls testicular and penile development in boys growth of pubic and underarm hair changes in body odour acne or changes in skin voice changes in boys the start of periods in girls. Your child’s healthcare team may monitor these changes during routine appointments. 📈 What if my child isn’t growing as quickly as their friends? Children don’t all grow at the same rate. However, slower growth can sometimes be an important sign of active IBD or inadequate nutrition . Your child’s IBD team may regularly monitor: height weight growth velocity — how quickly your child is growing BMI, when appropriate pubertal development. They will usually plot measurements over time to look for changes in your child’s individual growth pattern. A child who has always been smaller than their peers but continues to grow steadily may not have the same concerns as a child whose growth has recently slowed or stopped. 🥗 Why is nutrition important during puberty? Puberty is a period of rapid growth, so children need enough energy, protein, vitamins and minerals to support their developing bodies. Children with IBD may have increased nutritional needs, particularly when inflammation is active. Nutrients that may be important to monitor include: iron vitamin D calcium vitamin B12 folate zinc protein and overall energy intake. Your child’s IBD team or paediatric IBD dietitian can help determine whether your child is getting what they need. If your child is struggling to eat, losing weight or avoiding food because they are worried about pain or bowel symptoms, let their healthcare team know. 🩸 What about periods? For girls with IBD, periods may start later if growth and puberty have been affected. Once periods have started, menstrual cycles can also be irregular during the first few years, which can be normal. It’s worth talking with your child’s healthcare team if: periods have not started when expected periods stop after previously being regular bleeding is very heavy periods are causing significant pain your child is losing weight or struggling to eat you are concerned about their overall growth or development. Heavy periods can also contribute to iron deficiency and fatigue, which may be particularly important for a child who already has low iron or anaemia. 💬 What if my teenager feels different from their friends? This can be one of the hardest parts of delayed growth or puberty. Teenagers may compare themselves with classmates, siblings or friends and worry that they are “behind”. They may feel embarrassed, frustrated or different — even when their development is still within a healthy range. Try to create opportunities for your child to talk about how they feel without making their body or development the focus of every conversation. You might say: “Everyone develops at different times. If you’re worried about your body or how you’re growing, we can talk to your doctor together.” If your child is experiencing significant anxiety, low mood, withdrawal or distress about their body or development, speak with their healthcare team. 💊 Can treating IBD help? Controlling inflammation is an important part of supporting healthy growth and development. Your child’s treatment plan may include medication, nutrition support or other treatments designed to control their IBD. If inflammation is contributing to slowed growth or delayed puberty, getting the disease under good control may allow growth and development to progress. This is one reason regular monitoring is so important — your child’s healthcare team is looking at more than just whether their tummy symptoms have improved. 🔎 What if puberty still seems delayed? If your child’s growth or puberty appears slower than expected, their doctor may investigate further. Depending on your child’s situation, this could include: reviewing their growth chart assessing their stage of puberty checking nutrition and weight reviewing IBD symptoms and disease activity blood tests checking hormone levels assessing thyroid function considering a bone-age X-ray referring to a paediatric endocrinologist. Not every child will need all of these tests. The aim is to understand why puberty may be delayed and whether anything needs treatment . ❤️ What can parents do? You don’t need to monitor every aspect of your child’s development at home. Keep up with IBD appointments Regular appointments allow the team to monitor growth, nutrition, inflammation and puberty over time. Support good nutrition Offer a varied diet with enough energy and protein to support growth. Avoid unnecessary restrictive diets unless recommended by your child’s healthcare team. Watch for changes Let the IBD team know about noticeable changes in: appetite weight height or growth energy bowel symptoms eating patterns periods puberty or development. Talk openly about puberty Make puberty a normal topic of conversation. Your child may have questions they feel uncomfortable asking their parents, so remind them that their IBD team can answer private or sensitive questions too. Don’t compare Try not to compare your child’s development with siblings, classmates or friends. Puberty happens at different times for different children. 📞 When should I speak with the IBD team? Talk with your child’s healthcare team if you are concerned about: slowed height growth unexplained weight loss delayed puberty periods that have not started when expected periods stopping significant fatigue poor appetite difficulty eating ongoing diarrhoea or abdominal pain your child’s emotional wellbeing or body image. Your child’s IBD team can assess the whole picture and decide whether further investigation is needed. 💛 Remember: everyone’s timeline is different Puberty can be an emotional time for any child. Having IBD can add another layer of worry, particularly if your child’s growth or development seems different from their friends. Try to remember that puberty doesn’t happen on exactly the same schedule for everyone . If your child’s growth or development is slower than expected, don’t assume that IBD is the cause — but don’t ignore your concerns either. Their IBD team can monitor growth and puberty and investigate if something doesn’t look right. With appropriate treatment, nutrition and support, many children with IBD continue to grow and develop normally. Your child’s body has its own timeline — and they don’t have to navigate it alone. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

School Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. A practical guide to creating a school support plan that helps your child with IBD feel safe, understood and supported at school. When your child has Crohn’s disease or ulcerative colitis, school may need to make some practical adjustments to support their health needs. An IBD School Support Plan can help everyone understand what your child needs and what to do if symptoms affect their school day. It doesn’t need to be complicated. The goal is to create a clear, practical plan that can be shared with the people at school who need to know. 🏫 What is an IBD School Support Plan? An IBD School Support Plan is a written summary of your child’s individual needs at school. It can help school staff understand: what IBD is how it affects your child what symptoms they may experience their toilet needs medication requirements what happens during an IBD flare how fatigue may affect learning what to do if your child becomes unwell how absences and missed work will be managed who to contact if there is a concern. The plan can also help prevent your child from having to explain their condition repeatedly to different teachers. 🚽 Toilet access For many children with IBD, reliable toilet access is one of the most important parts of a school support plan. Your child’s plan might explain that they need: immediate access to a toilet permission to leave class without waiting access to a specific toilet a toilet pass or agreed alternative privacy if they have an accident support if symptoms suddenly become worse. Your child should not be expected to wait until the end of a lesson if they have urgent bowel symptoms. 😴 Fatigue and learning IBD-related fatigue can affect concentration, memory, participation and schoolwork. Your child’s plan can explain that fatigue may sometimes affect their ability to: concentrate in class complete work participate in PE manage a full school day complete homework. During difficult periods, your child may need temporary flexibility with workload or deadlines. 🔥 What happens during an IBD flare? Make sure the school understands what an IBD flare looks like for your child . This might include: increased bowel movements diarrhoea urgency abdominal pain blood or mucus in stools fatigue reduced appetite nausea. Include clear instructions about who the school should contact if your child becomes significantly unwell. 💊 Medication at school If your child needs medication during school hours, include the practical information staff need. This may include: medication name dose time it needs to be taken storage requirements who is responsible for administering it what to do if a dose is missed who to contact with questions. Only include the information relevant to your child’s school arrangements. 📚 Absences and missed schoolwork Children with IBD may miss school because of flares, appointments, blood tests, procedures or other medical needs. Your support plan can include an agreed process for: notifying the school about absences accessing missed classwork prioritising important work managing homework extending deadlines completing missed assessments returning to school after an absence. Having this process agreed in advance can make returning to school less stressful. 📝 Exams and assessments If IBD symptoms, fatigue or medical appointments may affect exams or assessments, discuss this with the school early. Depending on your child’s needs and the school’s policies, possible support may include: extra time rest breaks toilet access alternative arrangements extensions catch-up assessments. Available adjustments vary between schools and countries. 🏃 Sport, PE and activities IBD does not automatically mean your child needs to avoid sport. However, they may sometimes need to modify activities because of fatigue, pain, urgency or an active flare. The plan can explain when your child may need: a break access to water immediate toilet access modified activities permission to sit out when unwell a gradual return after illness. 🏕️ Camps and excursions School camps and excursions can require some extra planning. Consider including arrangements for: toilet access medication food and dietary needs emergency contacts what happens if symptoms worsen overnight toilet access changing and showering privacy contacting parents if your child becomes unwell. Planning ahead can help your child participate with greater confidence. 🧠 Emotional wellbeing Your child’s IBD can affect how comfortable they feel at school. They may worry about: needing the toilet having an accident friends asking questions being absent falling behind taking medication body changes eating at school. Consider identifying a trusted staff member your child can go to if they feel overwhelmed, embarrassed or unwell. 👩🏫 Who should receive the plan? You may not need to give the complete plan to every member of staff. Depending on your child’s age and needs, it may be shared with: classroom teachers year coordinators wellbeing staff school leadership the school nurse PE teachers staff supervising camps or excursions staff responsible for medication. Ask the school how medical information is stored and who needs access to it. 💬 Involve your child As children get older, they should have more say in how their IBD is managed at school. Ask your child: “Who are you comfortable knowing?” “What do you want your teachers to understand?” “What would make school easier for you?” “Is there anything you don’t want other students to know?” A teenager may want teachers to know they have unrestricted toilet access without wanting classmates to know they have IBD. Respecting your child’s privacy can help them feel more in control. 🔄 Keep the plan updated Your child’s needs may change. They might need very little support while their IBD is well controlled but require considerably more help during a flare. Review the plan when: your child’s treatment changes symptoms change they move to a new year level they change schools new medical needs develop they begin secondary school their independence increases. The plan should grow with your child. 📥 Download the IBD School Support Plan We’ve created a practical IBD School Support Plan that you can use to communicate your child’s needs with their school. It provides space to record important information about: your child’s IBD symptoms toilet access medication flares fatigue learning and absences PE and activities camps and excursions emotional wellbeing emergency contacts additional support needs. IBD School Support Plan for Parents .pdf Download PDF • 328KB Take the completed plan to your child’s school and use it as a starting point for a conversation about how they can best support your child. 💛 Remember Your child shouldn’t have to choose between managing their IBD and being part of school life. A good support plan isn’t about treating your child differently. It’s about removing unnecessary barriers so they can learn, participate, make friends and feel confident at school while getting the support they need. This resource is for general education and does not replace your school’s policies and procedures. School support requirements and medical arrangements vary between countries and individual schools. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More What should I tell my child’s school? What to share about Crohn’s disease or ulcerative colitis, including toilet access, fatigue, flares, medication, absences, exams, PE and emotional wellbeing. Read More

New Diagnosis Joint pain and IBD: Why does my child’s body hurt? Learn about joint pain, swelling and stiffness in children with Crohn’s disease or ulcerative colitis, what to watch for and when to speak with their healthcare team. Is your child complaining of sore knees, ankles, wrists or other joints? Joint pain can occur in children with IBD, but there are many possible reasons for it. Here’s what parents should know. When your child has inflammatory bowel disease (IBD), you probably spend a lot of time thinking about their stomach and bowel symptoms. But IBD can affect more than the digestive system. Some children with Crohn’s disease or ulcerative colitis experience joint pain, stiffness or swelling. These symptoms can sometimes be related to inflammation associated with IBD. Other times, joint pain may have nothing to do with IBD at all. So how do you know when your child’s sore joints need to be checked? 🦴 Can IBD cause joint pain? Yes. Joint problems are one of the extraintestinal manifestations of IBD. “Extraintestinal” simply means something related to IBD that happens outside the digestive tract. Joint symptoms can include: Pain or aching in a joint Stiffness Swelling Warmth around a joint Difficulty moving a joint normally Pain that is worse after resting Morning stiffness Pain that comes and goes Joint symptoms can occur in children with both Crohn’s disease and ulcerative colitis. However, having IBD doesn’t automatically mean that every episode of joint pain is caused by IBD. Children can also develop joint pain from injuries, growing, infections, physical activity and other conditions. That’s why it’s important to tell your child’s healthcare team about new or persistent joint symptoms. 🔥 What does IBD-related joint pain feel like? There isn’t one specific type of joint pain associated with IBD. Some children may experience joint pain and stiffness, while others may have visible swelling. The symptoms can affect different joints, including: Knees Ankles Hips Wrists Elbows Fingers Toes Some children have symptoms in one joint, while others experience pain in several joints. Your child may describe it as aching, stiffness, soreness or simply say: “My knee hurts.” You may notice changes before your child tells you. For example, they might start avoiding stairs, stop running around, walk differently or complain that they are stiff when they get out of bed. 🌅 Why is morning stiffness important? One thing worth paying attention to is when your child’s joint pain happens. Inflammatory joint pain can sometimes cause stiffness after periods of rest, including first thing in the morning. You might notice that your child: Takes longer to get moving in the morning Says their joints feel stiff after sleeping Walks differently when they first get up Improves after moving around Has recurring stiffness after sitting for a long time Tell your child’s gastroenterologist if you notice this pattern. It doesn’t necessarily mean your child has an IBD-related joint condition, but it is useful information for their healthcare team. 🔄 Can joint pain happen during an IBD flare? It can. For some children, joint symptoms can occur alongside active bowel inflammation. This means you may notice joint pain at the same time as symptoms such as: Diarrhoea Abdominal pain Blood or mucus in the stool Urgency Fatigue Reduced appetite Weight loss For some children, however, joint symptoms don’t necessarily follow the same pattern as their bowel symptoms. Your child could have very few digestive symptoms but still experience joint problems. This is one reason it’s important to mention joint symptoms even when your child’s IBD seems well controlled. 🩺 What should I tell our gastroenterologist? Try to be as specific as possible. Instead of simply saying: “Their joints hurt.” Tell the doctor: Which joints hurt When the pain started Whether it is one joint or several Whether there is swelling Whether the joint feels warm Whether your child has morning stiffness How long the stiffness lasts Whether movement makes it better or worse Whether it is affecting walking, running or sport Whether the pain happens during an IBD flare Whether your child has had a recent infection or injury Whether the pain is getting better, worse or staying the same If you can, keep a simple record for a few days. You could write: Monday: Right knee sore after school. No swelling. Tuesday: Stiff getting out of bed. Improved after breakfast. Wednesday: Both ankles sore after sport. This can give your child’s doctor a much clearer picture. 📸 Should I take photos? If you notice visible swelling, redness or a change in the appearance of a joint, taking a photograph can sometimes be useful. Joint swelling may come and go, so a photo can help show your child’s healthcare team what you noticed. You can also make a note of: Date + joint affected + swelling + pain + stiffness + activity + bowel symptoms. You don’t need to track every little ache. Focus on symptoms that are persistent, recurring or affecting your child’s normal activities. 🏃 What about sport and exercise? In most cases, children with IBD should be encouraged to stay active when they feel well. Physical activity can be an important part of a child’s health and wellbeing. However, if your child is experiencing significant joint pain, swelling or difficulty moving a joint, speak with their healthcare team about what activities are appropriate. Don’t push your child through significant pain just because they are worried about missing sport. Their doctor can help determine whether they need to modify their activity while the joint problem is assessed. 💊 Could the medication be causing the pain? There are many possible causes of joint pain, so it is important not to assume that IBD itself is responsible. Some medications can also have musculoskeletal or joint-related side effects. If your child develops new joint pain after starting or changing a medication, tell their doctor. Don’t stop an IBD medication without speaking to your child’s healthcare team first. Your doctor can consider the timing of the symptoms alongside your child’s medication, IBD activity and other possible causes. 👩⚕️ Will my child need to see a rheumatologist? Not necessarily. Your child’s gastroenterologist may assess the symptoms first and decide whether further investigation is needed. If there are ongoing or unusual joint symptoms, they may recommend assessment by a paediatric rheumatologist. A rheumatologist is a doctor who specialises in conditions affecting the joints, muscles and immune system. Your child’s gastroenterologist and rheumatologist may work together if your child needs care from both specialties. 🧪 Will my child need more tests? That depends on your child’s symptoms. Your healthcare team may consider: A physical examination Blood tests Imaging such as an ultrasound or MRI Assessment by a rheumatologist Other investigations depending on the symptoms There isn’t one test that can tell you whether every episode of joint pain is caused by IBD. Your child’s doctor will look at the whole picture, including their IBD history, symptoms, examination and test results. 🚩 When should I contact the doctor? Contact your child’s IBD team or doctor if joint pain: Keeps coming back Lasts for more than a short period Is getting worse Is associated with swelling Causes morning stiffness Makes walking difficult Stops your child participating in normal activities Is affecting sleep Happens alongside worsening IBD symptoms Starts after a medication change Is affecting several joints Seek urgent medical attention if: Your child has a joint that is very painful, significantly swollen, hot or red, particularly if they also have a fever or are very unwell. A hot, swollen joint can have causes that need prompt medical assessment, including infection. If you’re unsure how urgently your child needs to be assessed, contact your healthcare provider for advice. 💛 Don’t assume it’s “just growing pains” It’s easy to hear your child complain about sore legs and assume it’s growing pains. Children do experience ordinary aches and pains, and not every ache is related to IBD. But if your child has IBD and their joint pain is persistent, recurrent, swollen or affecting their normal activities, it’s worth mentioning to their healthcare team. You know your child better than anyone. If something feels different from their usual aches and pains, tell their doctor. 📝 Questions to ask at your child’s appointment If joint pain has become a concern, you could ask: Could this joint pain be related to my child’s IBD? Does the pattern sound inflammatory? Could it be related to a medication? Should we have any tests? Does my child need to see a rheumatologist? Should my child continue their usual sport and activities? Is there anything we should avoid? What symptoms should make us contact you? Could the joint symptoms be a sign that my child’s IBD is becoming active? What should we do if the joint pain gets worse? ❤️ The important thing to remember Joint pain can be an unexpected part of living with IBD, and it can be worrying when your child suddenly starts complaining about sore joints. But joint pain does not automatically mean that your child’s IBD is getting worse. There are many possible causes, and your child’s healthcare team can help work out what is happening. Keep an eye on the pattern, write down anything unusual and let your child’s IBD team know about persistent or recurring symptoms. You don’t need to diagnose the cause yourself. Your job isn’t to know exactly what the pain means — it’s to notice the change and tell the people who can help. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Medication What if my child misses a dose? What should you do if your child misses an IBD medication dose? Learn what to do with medications, including biologics, steroids and other treatments. It happens. Your child forgets their medication. A dose gets left at home. They refuse it. They fall asleep before taking it. Or they vomit shortly after taking it and you’re not sure whether the medication stayed down. When your child has Crohn’s disease or ulcerative colitis, it can be stressful wondering what to do next. The most important thing to know is: There isn’t one missed-dose rule for every IBD medication. What you should do depends on the medication, dose, timing and your child’s individual treatment plan. Instructions can also vary between countries and medicines. If you’re unsure, check the medication information provided with your child’s medicine or contact their IBD team or pharmacist for advice. 💊 Don’t automatically give a double dose One of the most common questions parents have is: “Should I give two doses to make up for the missed one?” Don’t assume the answer is yes. Some medicines have specific instructions about when a missed dose can be taken, while others may need to be skipped until the next scheduled dose. Never give an extra dose unless your child’s healthcare professional or the medication instructions specifically tell you to. If you’re unsure, ask before giving another dose. ⏰ What should I do if we realise soon after the scheduled time? The correct action depends on the medication. For some medicines, taking the dose when you remember may be appropriate if it is not too close to the next dose. For others, the missed dose may need to be skipped. That’s why it’s important to check the instructions for your child’s specific medication rather than following advice you’ve seen for another medicine. If you cannot find the instructions, contact your pharmacist or IBD team. 📅 What if we miss a dose by a whole day? If your child has missed a scheduled dose and the next dose is approaching, don’t guess what to do. Write down: The medication name The dose When the dose was supposed to be taken When you realised it was missed When the next dose is due Then contact your child’s pharmacist or IBD team for advice. This is particularly important for medicines that are taken on specific schedules or treatments where timing affects how the medication works. 💉 What if my child misses a biologic injection? Biologic medications can have different dosing schedules, including injections given every few weeks or other intervals. If your child misses a biologic injection: Don’t automatically give the injection as soon as you remember or change the schedule yourself. Contact the healthcare team managing your child’s treatment. They can tell you when the missed dose should be given and whether the next scheduled dose needs to change. If your child receives biologic treatment through an infusion centre or hospital, contact the service that arranged the treatment. 💧 What if my child vomits after taking their medication? This can be particularly confusing. Whether your child needs another dose depends on: The medication How soon after taking it they vomited Whether the medication was likely absorbed Whether you can see the medicine in the vomit Your child’s individual treatment plan Don’t automatically repeat the dose. Contact your pharmacist or IBD team and tell them: “My child took their medication at 8 am and vomited at 8:30 am. Should we repeat the dose?” Having the exact timing can help them give you the right advice. 🤢 What if my child has diarrhoea? Diarrhoea can sometimes affect how medicines are absorbed, depending on the medication and what is happening in the gut. However, there isn’t a general rule that a child should automatically repeat medication because they have diarrhoea. If your child is having a significant IBD flare, frequent diarrhoea or vomiting, contact their healthcare team for advice about their medications and hydration. 😴 What if my child falls asleep before taking their medication? This is a common problem, especially with medicines taken at night. Whether you should give the medication when they wake up or wait until the next scheduled dose depends on the medicine. Check the medication instructions or ask your pharmacist or IBD team. Try not to turn one missed dose into a stressful event for your child. The important thing is to work out what to do next and get back into the normal medication routine. 🧒 What if my child refuses their medication? Sometimes a “missed dose” isn’t really about forgetting. Your child may refuse because: They don’t like the taste They struggle to swallow tablets They’re worried about side effects They’re tired of taking medication They are embarrassed They don’t feel sick anymore They are angry about having IBD They want more control over their treatment If refusing medication is becoming a pattern, tell your child’s IBD team. There may be ways to make treatment easier, such as a different formulation, medication routine or additional support. Don’t let medication become a daily battle if you can avoid it. Try to understand what’s making it difficult. 🧠 What if my teenager is forgetting doses? As children get older, medication responsibility gradually shifts from parent to child. This is an important part of becoming independent with IBD treatment, but it can take time. Instead of simply reminding them repeatedly, try helping them create a system that works for them. They could use: Phone reminders A medication calendar A pill organiser, where appropriate A medication tracking app A routine linked to another daily activity A written checklist The goal is to help them learn how to manage their medication independently — not to expect them to get everything right immediately. 📝 Keep a record of missed doses If your child misses a dose, make a quick note. You could record: Medication Dose Date Scheduled time What happened Advice received This can be particularly useful if missed doses happen more than once. If your child has several missed doses, let their IBD team know. They may want to understand why it is happening and help find a more manageable treatment routine. What if my child misses several doses? If your child has missed multiple doses, contact their IBD team or pharmacist rather than trying to catch up yourself. This is especially important if: Your child is taking medication for an active flare Their symptoms are returning They have missed several doses of a regular treatment They are taking an immunomodulator or biologic They have stopped taking medication altogether You aren’t sure when their next dose should be Your healthcare team can tell you exactly what to do. 🔥 Could missing medication cause an IBD flare? Consistently missing prescribed IBD medication can make it harder to keep the disease under control for some children. However, one missed dose does not automatically mean your child will have a flare . If your child’s symptoms begin changing after missed medication, keep an eye on what is happening and contact their IBD team if symptoms persist or worsen. Don’t assume every new symptom is caused by the missed dose. Your child could also have an infection or another reason for feeling unwell. 🌍 Does the advice vary between countries? Yes. Medication names, formulations, approved uses and prescribing instructions can vary between countries. Even if another parent tells you what they were instructed to do with the same-sounding medication, their situation may not be identical to your child’s. For international IBD families, the safest approach is to follow: Your child’s medication instructions Your child’s IBD team’s advice Advice from a pharmacist familiar with the medication If you have moved countries or changed healthcare providers, make sure your new team has an up-to-date list of your child’s medications. 📞 When should I call the IBD team? Contact your child’s IBD team if: You’re unsure what to do after a missed dose Several doses have been missed Your child has stopped taking their medication Your child vomited after taking medication You are concerned about a medication side effect Your child’s symptoms are returning Your child is having a flare You aren’t sure when the next dose should be given You are changing healthcare providers or travelling internationally You don’t need to wait until your child becomes unwell before asking for advice. 🚨 When is it an emergency? A missed dose on its own is usually not an emergency . However, your child may need urgent medical attention if they are seriously unwell, regardless of whether a medication dose was missed. Seek urgent medical care if your child has symptoms such as: Severe or rapidly worsening abdominal pain Heavy or ongoing bleeding Severe dehydration Repeated vomiting and inability to keep fluids down Fainting or severe weakness A very swollen or unusually tender abdomen Difficulty staying awake or a significant change in alertness A high or persistent fever with your child appearing very unwell If you believe your child is experiencing an emergency, seek urgent medical care rather than waiting for the IBD team to respond. ❤️ Don’t panic over one missed dose If you’ve just realised your child missed their IBD medication, take a breath. Don’t automatically give an extra dose. Don’t double the next dose. Check the medication instructions and contact your child’s pharmacist or IBD team if you’re unsure. One missed dose doesn’t mean you’ve failed or that your child’s treatment has been ruined. What matters is knowing what to do next and getting back to a safe, consistent medication routine. And if missed doses are becoming a regular problem, tell your child’s healthcare team. They can help you find a solution that works for your child and your family. When it comes to IBD medications, it’s always better to ask than to guess. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Growth & Puberty Helping your child feel comfortable about their body How Crohn’s disease and ulcerative colitis can affect body confidence, growth, weight, puberty and eating, plus practical ways to support your child’s self-esteem and wellbeing. Is your child becoming more aware of their body, comparing themselves with friends, or feeling uncomfortable about changes caused by IBD? Growing up can make children and teenagers more aware of how they look and how their bodies compare with other people’s. For children with Crohn’s disease or ulcerative colitis, this can sometimes feel even more complicated. IBD can affect growth, weight, puberty, skin, hair, scars, bloating and body shape . Some medications can also cause temporary changes in appearance. Your child may feel different from their friends — even when there is nothing medically wrong with their body. Helping them develop a positive and comfortable relationship with their body isn’t about making them love every part of themselves. It’s about helping them understand that their body is changing, their worth isn’t based on appearance, and they deserve to feel comfortable and supported. 💬 Start by listening If your child says something negative about their body, it can be tempting to immediately reassure them: “You look completely fine!” Although this is well intentioned, it can sometimes make a child feel like their concerns haven’t been heard. Instead, try asking: “What makes you feel that way?” “Have you been thinking about this for a while?” “Is someone saying something at school?” “Are you worried about something changing because of your IBD?” “What would help you feel more comfortable?” You don’t have to immediately fix the problem. Sometimes simply knowing that you are willing to listen can make a big difference. 🌱 Explain that bodies develop differently Children don’t all grow at the same speed. Some children have growth spurts earlier, while others develop later. Puberty can also happen at different times. This can be particularly difficult for children with IBD if their growth or puberty has been affected by active inflammation or nutritional difficulties. Remind your child that being different from their friends doesn’t automatically mean something is wrong . Their IBD team can monitor their growth and development and help determine whether anything needs attention. 🩺 Talk honestly about IBD-related body changes Depending on their symptoms and treatment, your child may experience changes such as: weight loss or weight gain slower growth delayed puberty bloating or abdominal swelling acne changes in body shape stretch marks scars from procedures or surgery changes in hair or skin changes related to medications such as steroids. Don’t pretend these changes aren’t happening. A simple, honest explanation can help your child understand that their body hasn’t “failed” them. For example: “Your body has been dealing with a lot because of your IBD. Some of these changes may be part of your treatment or your body recovering. Let’s talk to your doctor if you’re worried.” 💊 Be careful when talking about medication changes Some IBD medications can cause noticeable changes in appearance. Corticosteroids, for example, can sometimes cause increased appetite, changes in body shape, acne or other temporary physical changes. These effects can be particularly difficult for teenagers who are already sensitive about their appearance. If your child is upset about a medication-related change, let their IBD team know. Don’t stop or change prescribed medication because of appearance-related side effects without discussing it with the healthcare team. The team may be able to explain what to expect, whether the change is temporary and whether there are ways to manage it. 🍽️ Avoid making food about weight Food can become complicated for children with IBD. A child may already have anxiety around eating because of abdominal pain, diarrhoea or urgency. Adding pressure to gain or lose weight can make that relationship with food even harder. Try to focus conversations around: energy strength nourishment growth feeling well enjoying food. Avoid labelling foods as “good” or “bad” or talking about needing to “burn off” food. If your child needs nutritional support because of poor growth, weight changes or active IBD, a paediatric IBD dietitian can help. 🪞 Be aware of body checking Some children may begin checking their body frequently. They might: repeatedly look in the mirror weigh themselves often compare their body with friends pinch or examine parts of their body frequently ask whether they look different avoid mirrors or photographs change their clothing to hide parts of their body. Occasional self-consciousness is common, particularly during puberty. But if body concerns are becoming a major part of your child’s day or affecting eating, school, friendships or activities, it’s worth talking with their healthcare team. 👕 Help them feel comfortable in their clothes Clothing can make a surprisingly big difference to confidence. Your child may feel uncomfortable with clothes that: press against a painful or bloated abdomen draw attention to weight changes don’t fit after growth changes make medical equipment or stomas difficult to manage make them feel exposed or self-conscious. Let your child have some control over what they wear. Comfort doesn’t have to mean hiding their body. It’s about helping them feel physically and emotionally comfortable in what they choose. 🏫 Think about school and friendships Body image concerns can become harder when children are surrounded by peers. Your child may worry about: changing clothes for sport swimming using the school bathroom accidents scars taking medication at school being smaller or taller than their friends comments about weight or appearance. If your child is worried about something happening at school, talk through possible solutions with them. Their school may also be able to provide practical support and privacy where needed. 🏃 Help your child enjoy their body Physical activity doesn’t need to be about weight. Encourage activities that your child enjoys and that are appropriate for their health and IBD. This could be: swimming walking dancing cycling team sports strength activities playing outside simply being active with friends. The goal is to help children experience what their bodies can do , rather than focusing only on how their bodies look. If your child is having an IBD flare, significant fatigue, pain or other symptoms, ask their healthcare team about appropriate activity levels. ❤️ Watch how you talk about your own body Children notice how adults talk about their bodies. If they regularly hear comments such as: “I look terrible.” “I need to lose weight.” “I can’t eat that — it’s too fattening.” “I hate my stomach.” they can start to learn that bodies are something we should constantly judge or change. You don’t have to pretend you never have insecurities. But modelling a more neutral approach can help: “My body has changed over time, and that’s okay. I’m focusing on looking after it.” 🧠 When body image becomes more concerning Body dissatisfaction is common, but sometimes it can become more serious. Speak with your child’s healthcare team if you notice: skipping meals or deliberately restricting food intense fear of gaining weight frequent weighing exercising excessively avoiding eating with others avoiding school or social activities because of appearance becoming very distressed about their body withdrawing from friends significant changes in mood rapid or unexplained weight changes vomiting or other attempts to control weight. Children with IBD can be particularly vulnerable to nutritional problems, so changes in eating behaviour should be taken seriously. Your child’s IBD team may involve a dietitian, psychologist or another healthcare professional if additional support is needed. 🗣️ What can I say to my child? Sometimes parents know what they want to say but aren’t sure how to start the conversation. You could try: “Your body has been through a lot. How are you feeling about the changes you’ve noticed?” “You don’t have to look like anyone else. Bodies develop at different times.” “If something about your body is worrying you, you can always tell me.” “Let’s talk to your IBD team about it. You don’t have to figure this out by yourself.” “Your body is more than how it looks. What are some things you like about what your body can do?” The goal isn’t to convince your child that they look perfect. It’s to help them feel safe talking about their body without shame. 📞 When should I ask for extra help? Talk with your child’s IBD team if body image concerns are affecting their: eating weight growth medication adherence school attendance friendships sport or activities mood confidence daily life. You don’t have to wait until there is a serious problem before asking for support. A paediatric IBD dietitian or mental health professional can help your child develop a healthier relationship with food and their body while taking their medical needs into account. 💛 Your child’s body is not the problem IBD can sometimes make children feel like their bodies are different, unpredictable or difficult to control. Your child doesn’t need to have a perfect body image every day. What matters is helping them understand that their body deserves care and respect — including on the days when they don’t feel particularly confident. Focus on what their body does , how it is growing and healing, and the things that make your child feel like themselves. Your child is so much more than their IBD, their weight, their appearance or their growth chart. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

New Diagnosis Crohn’s or ulcerative colitis: What’s the difference? Learn the key differences, including symptoms, inflammation, diagnosis, treatment, flares and what each type of IBD can mean for your child. If your child has recently been diagnosed with IBD, you may be wondering what the difference is between Crohn’s disease and ulcerative colitis. Here’s a simple guide for parents. If you’ve been told that your child has inflammatory bowel disease (IBD), you may have heard the words Crohn’s disease and ulcerative colitis (UC). But what actually makes them different? Both are types of IBD. Both involve inflammation. Both can cause symptoms such as abdominal pain, diarrhoea and fatigue. And both can affect a child’s everyday life. The biggest difference is where the inflammation occurs and how it affects the digestive tract. Understanding the basics can make medical appointments and conversations with your child’s IBD team a little easier. 🩺 First, what is IBD? IBD stands for inflammatory bowel disease. It is a group of conditions involving ongoing inflammation in the digestive tract. The two main types are: Crohn’s disease Ulcerative colitis There is also a third category called IBD-unclassified (IBD-U), which may be used when doctors cannot clearly determine whether a child’s condition is Crohn’s disease or ulcerative colitis. IBD is different from irritable bowel syndrome (IBS). IBS can cause digestive symptoms but does not cause the same type of intestinal inflammation seen in IBD. 🔵 What is Crohn’s disease? Crohn’s disease can cause inflammation anywhere along the digestive tract. This means it can affect areas from the mouth all the way through to the anus. In children, Crohn’s disease commonly affects the: Small intestine Large intestine Area where the small and large intestines meet But every child is different. Crohn’s inflammation can also occur in patches, meaning there can be areas of inflamed bowel with areas of healthy bowel in between. The inflammation can affect deeper layers of the bowel wall, which is one of the features that distinguishes Crohn’s disease from ulcerative colitis. 🟠 What is ulcerative colitis? Ulcerative colitis causes inflammation in the large intestine, or colon. It affects the inner lining of the colon and usually begins in the rectum, extending upwards to varying degrees. Unlike Crohn’s disease, ulcerative colitis does not affect the entire digestive tract. The inflammation is generally continuous rather than occurring in separate patches. Some children have inflammation throughout their colon, while others have inflammation affecting only part of it. 🚽 Do the symptoms look different? There can be a lot of overlap between Crohn’s disease and ulcerative colitis. Both can cause: Diarrhoea Abdominal pain Fatigue Reduced appetite Weight loss Poor weight gain Blood in the stool Urgency to use the toilet Needing to use the toilet frequently However, some symptoms can be more common depending on which type of IBD your child has and where the inflammation is located. For example, blood in the stool and urgency are common symptoms of ulcerative colitis, while Crohn’s disease can cause symptoms related to inflammation in the small intestine, such as abdominal pain, diarrhoea and difficulty absorbing nutrients. But symptoms alone generally aren’t enough to determine whether a child has Crohn’s disease or ulcerative colitis. That’s why doctors use a combination of medical history, blood tests, stool tests, endoscopy, biopsies and imaging. 🧪 How do doctors tell the difference? Diagnosing Crohn’s disease or ulcerative colitis isn’t usually based on one test. Your child’s gastroenterologist will look at the whole picture. This may include: Blood tests Blood tests can provide information about inflammation, anaemia, iron levels and your child’s overall health. Stool tests Tests such as faecal calprotectin can provide information about inflammation in the intestines. Stool tests may also help doctors rule out infections that can cause similar symptoms. Endoscopy and colonoscopy Doctors can look directly at the digestive tract and take small tissue samples called biopsies. The appearance of the bowel and the biopsy results can provide important information about the type and extent of inflammation. Imaging Some children may need imaging such as an MRI or MR enterography to examine parts of the digestive tract, particularly the small intestine. 🧩 What if the doctors aren’t sure? Sometimes your child’s symptoms, test results and biopsies don’t clearly fit Crohn’s disease or ulcerative colitis. Your child may then be diagnosed with IBD-unclassified (IBD-U). This can feel confusing for parents. You might think: “If they know it’s IBD, why don’t they know which type?” IBD can be complicated, particularly in children. As your child’s condition is monitored over time, their doctors may gain a clearer understanding of the pattern of their disease. The diagnosis can sometimes change as more information becomes available. 💊 Is the treatment different? There can be differences in how Crohn’s disease and ulcerative colitis are treated. However, there is also a lot of overlap. Treatment may include medicines such as: Aminosalicylates Corticosteroids Immunomodulators Biologic medicines Other targeted treatments Some children with Crohn’s disease may also receive exclusive enteral nutrition (EEN) as part of their treatment. Your child’s treatment will depend on their individual situation, including the type and location of their IBD, how active the disease is, their age, growth and previous response to treatment. There is no single treatment plan that works for every child. 📈 What about growth and puberty? Growth is particularly important in children with IBD. Active inflammation, reduced appetite and nutritional problems can affect: Weight gain Height Growth Puberty Energy levels Nutritional status This is why your child’s gastroenterology team may regularly monitor their height and weight. If you’re concerned that your child isn’t growing as expected, bring it up with their IBD team. 🦴 Can both types cause problems outside the bowel? Yes. IBD can affect parts of the body outside the digestive tract. These are called extraintestinal manifestations. Children with Crohn’s disease or ulcerative colitis may experience problems involving areas such as: Joints Skin Eyes Liver and bile ducts Not every child will experience these problems. If your child develops new symptoms outside the digestive system, let their healthcare team know. 🔥 Can both Crohn’s disease and ulcerative colitis flare? Yes. Both conditions can have periods when inflammation becomes more active. These are commonly called flares. A flare may cause symptoms such as: Increased diarrhoea Abdominal pain Blood or mucus in the stool Urgency Fatigue Reduced appetite Weight loss Fever The aim of treatment is to control inflammation and help your child achieve and maintain remission. ❤️ Does one type of IBD mean a different future? It’s understandable to wonder what your child’s diagnosis means for their future. But there isn’t a simple answer. Crohn’s disease and ulcerative colitis can both vary considerably from child to child. Some children have relatively mild disease, while others need more intensive treatment. The location and severity of inflammation, response to treatment, growth, nutrition and other factors all contribute to how a child’s IBD is managed. Your child’s diagnosis is not a prediction of exactly what their future will look like. Their gastroenterology team will monitor how their disease behaves and adjust treatment as needed. ❓ Questions to ask your child’s gastroenterologist If you’re still trying to understand your child’s diagnosis, you could ask: Does my child have Crohn’s disease or ulcerative colitis? Where exactly is the inflammation? How active is the inflammation? What did the biopsies show? What did the colonoscopy or endoscopy show? Does my child need an MRI or other imaging? What treatment do you recommend and why? How will we know whether treatment is working? How will you monitor my child’s growth? What symptoms should make us contact the IBD team? What should we do if we think our child is having a flare? Could my child’s diagnosis change as they get older? Don’t be afraid to ask your child’s gastroenterologist to explain something again. You don’t need to understand every medical term immediately. 💛 The most important thing to remember Crohn’s disease and ulcerative colitis are different conditions, but they are both forms of IBD. The differences can help doctors decide how to investigate and treat your child’s condition, but your child’s diagnosis is only one part of their story. Your child is still your child. They can still go to school, play sport, spend time with friends, travel, have sleepovers and make plans for the future. There may be times when IBD gets in the way, but with the right medical care and support, children with IBD can continue to grow, learn and take part in the things that matter to them. If you’re new to IBD, take it one step at a time. You don’t need to understand everything today. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Medication Helping kids become responsible for their medication How to help children with IBD become more independent with their medication, including remembering doses, managing prescriptions, handling missed doses and speaking with their IBD team. As children with IBD get older, one of the biggest changes is gradually moving from “Mum or Dad manages my medication” to “I know how to manage my medication.” This doesn’t happen overnight. A child who has always relied on a parent to organise their IBD medications may suddenly be expected to remember doses, understand prescriptions, speak to their healthcare team and eventually manage their treatment independently. That’s a lot to learn. The goal isn’t to hand over everything at once. It’s to build independence step by step , while making sure your child has the knowledge and support they need. 🌱 Why medication independence matters Learning to manage medication is an important part of growing up with Crohn’s disease or ulcerative colitis. As your child gets older, they will gradually need to know: What medications they take What each medication does When they take it How they take it What happens if they miss a dose Which side effects to watch for When to contact their IBD team How to organise prescriptions How to manage medication at school, university, work or while travelling These skills don’t need to be mastered all at once. Think of it as teaching a skill, not transferring a job . 👧 Start earlier than you think You don’t need to wait until your child is a teenager before involving them. You can start with small, age-appropriate steps. For example: Younger children They might learn: The name of their medication What it looks like Why they take it When they take it Where it is kept You can still manage the medication while allowing them to be involved. Primary school-aged children They might begin to: Remind you when medication is due Help tick doses off a chart Learn the names of their medications Understand what each medication does Tell you when something feels different Older children They can start to: Prepare their medication with supervision Use reminders Keep track of doses Learn what to do if a dose is missed Ask questions during appointments Know who to contact when they have a problem Teenagers They can gradually take on more responsibility for: Organising medication Remembering doses Managing supplies Understanding prescriptions Speaking directly with their healthcare team Ordering or collecting medication where appropriate Managing medication when away from home The exact pace will depend on your child’s age, maturity, health and treatment. 💊 Make sure they know what they’re taking Your child should gradually learn the names of their medications. Instead of: “Here’s your medicine.” Try: “This is your mesalazine. It’s one of the medicines you take to help control your IBD.” Or: “This is your biologic. It helps control the inflammation in your body.” They don’t need to understand the science behind every medication. They just need a basic understanding of what they take and why . 🧠 Teach the “what, when and why” A simple way to teach medication independence is: What? What is the medication called? When? When does your child take it? Why? What does it help with? Then gradually add: How? How do they take it? What if? What should they do if they miss a dose, become unwell or have a possible side effect? This creates a foundation they can build on as they get older. 📱 Use reminders rather than relying on memory Forgetting medication doesn’t necessarily mean your child doesn’t care. Children and teenagers have busy lives. School, sport, friends, homework and activities can make it easy to forget a dose. Helpful tools might include: Phone alarms Calendar reminders Medication reminder apps A checklist A medication chart A pill organiser, where appropriate Linking medication to an established daily routine Let your child choose the system they prefer. The goal is to help them develop a system that works without you having to remind them every time . 🎒 Practice managing medication away from home Independence becomes particularly important when your child starts spending more time away from you. This could be: School camps Sleepovers Sporting trips Holidays Family visits School excursions University Part-time work Start practising while you’re still nearby. For example: “We’re going to Grandma’s tomorrow. What medication will you need to take with you?” Let your child think through the answer. Then check together. This is a much gentler way to build independence than suddenly expecting them to manage everything alone. 🏫 What about medication at school? Depending on your child’s age, school policies and where you live, your child may need support with medication during the school day. Talk with the school about: Where medication is stored Who is responsible for administering it Whether your child can carry medication What happens if a dose is forgotten What happens during excursions and camps Who to contact if your child becomes unwell School medication policies differ between countries and schools, so check the arrangements that apply where you live. As your child gets older, involve them in these conversations. ✈️ Teach them how to manage medication when travelling Travel is an excellent opportunity to practise independence. Your child can learn to think about: How much medication they need When doses are due Where medication should be stored What to do if medication is lost Who to contact if they become unwell How to carry medication while travelling For international travel, medication and travel requirements can vary between countries. Your healthcare team or pharmacist can help you prepare. 📋 Give them their own medication list An up-to-date medication list can be incredibly useful. Include: Medication names Doses How often they are taken How each medication is given Allergies Important medication reactions Their IBD team’s contact details Other relevant medicines or supplements As your child gets older, teach them where this information is kept and how to update it. Eventually, they should be able to explain their medication list to a healthcare professional themselves. 🩺 Help them speak during appointments One of the biggest steps towards healthcare independence is helping your child become comfortable speaking to their IBD team. It can be tempting to answer every question for them. Instead, try pausing and giving your child a chance to answer first. The healthcare team might ask: “How have your bowel movements been?” Give your child time to respond. If they forget something important, you can add it afterwards. This teaches them that their healthcare appointments are for them , not just for their parents. ❓ Encourage them to ask questions Teach your child that it’s okay not to understand something. They can ask: “What does this medication do?” “How long will I need to take it?” “What happens if I miss a dose?” “What side effects should I watch for?” “Can I play sport?” “Can I take this medication on holiday?” “Who do I call if I feel sick?” “What happens if my symptoms come back?” These are skills they will use throughout their life. 🚨 Make sure they know when to ask for help Medication independence doesn’t mean your child should handle every problem alone. They should know which situations require help from an adult or healthcare professional. Teach them to speak up if: They accidentally take the wrong dose They miss medication They vomit after taking medication They develop a possible medication side effect They run out of medication Their medication is lost They develop new or worsening IBD symptoms They aren’t sure what to do The message should be: “You can manage more things yourself as you get older, but you never have to figure out a medical problem alone.” 🤝 Let go gradually For parents, this can be one of the hardest parts. You may have been managing your child’s medication for years. It can feel safer to continue doing everything yourself. But independence develops through practice. You might move through stages like: Parent does it → parent and child do it together → child does it with supervision → child does it independently → parent checks occasionally. There is no fixed age when your child should reach the final stage. Some children will be ready earlier than others. 💬 Talk about mistakes without blame Your child will probably forget a dose at some point. They may leave medication at home. They may misunderstand an instruction. They may forget to order a repeat prescription. These things happen. Try to focus on: What happened? Why did it happen? How can we make it easier next time? rather than: “Why didn’t you remember?” The goal is to help them develop problem-solving skills. 🔄 Build a backup plan Even when your child is becoming independent, it’s helpful to have a backup system. For example: Parent knows the medication schedule Child has their own reminders Medication list is saved on both phones Important contact numbers are available A trusted adult knows what to do in an emergency Medication supplies are checked before travel Independence doesn’t mean removing support. It means making sure your child knows how to access support when they need it. ❤️ Independence doesn’t mean doing everything alone Living with paediatric IBD can mean learning healthcare skills earlier than some of your child’s friends. That can feel unfair. But these skills can also become a source of confidence. Every time your child remembers a dose, explains their medication to someone, asks a question at an appointment or speaks up about a symptom, they’re learning to take ownership of their health. You don’t have to step back all at once. Let them take one step at a time. Your role gradually changes from doing everything for them to helping them learn how to do it themselves . And even when they’re managing their IBD independently, they’ll still know you’re there when they need you. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

School Your child and school: A parent’s guide to IBD Learn about toilet access, fatigue, absences, flares, missed work, exams, friendships and practical ways to help your child feel supported and confident at school. Worried about how your child’s IBD will affect school? From toilet access and absences to fatigue, flares, friendships and catching up on missed work, here’s what parents need to know. School is a big part of childhood. It’s where children learn, make friends, play sport, develop independence and build confidence. But when your child has Crohn’s disease or ulcerative colitis, school can sometimes feel complicated. There may be appointments, blood tests, medications, fatigue, urgent trips to the toilet or periods when your child is too unwell to attend. They may worry about having an accident, explaining IBD to friends or falling behind with their schoolwork. The good news is that you don’t have to work everything out on your own. With the right communication and support, children with IBD can participate in school and the activities they enjoy while their health needs are being looked after. 🏫 Does the school need to know about my child’s IBD? You and your child can decide how much information to share, but it is usually helpful for key people at school to know that your child has IBD. This might include: your child’s classroom teacher or teachers the school principal or relevant wellbeing staff the school nurse, if there is one the sports or PE teacher a year coordinator or pastoral care staff member other staff who need to understand your child’s medical needs. You don’t necessarily need to tell everyone in the school. The aim is to make sure the people responsible for your child’s care and education understand what IBD is and know what to do if your child becomes unwell. 🚽 Toilet access is important One of the biggest concerns for children with IBD is getting to the toilet quickly. During an IBD flare, your child may experience: diarrhoea urgency frequent bowel movements abdominal pain mucus or blood in their stool difficulty waiting to use the toilet. Your child should not have to explain their symptoms every time they need to use the bathroom. Talk with the school about making sure your child has reliable and immediate toilet access. Depending on your child’s age and school, this might include a toilet pass or another agreed arrangement. It can also help to identify which toilets your child can use and what they should do if the closest toilet is occupied. Remember: accidents can happen with IBD. They are not your child’s fault. 😴 What about IBD fatigue? Fatigue is more than simply feeling tired. Children with IBD may experience significant fatigue because of active inflammation, anaemia, nutritional deficiencies, poor sleep, pain, medications or the general physical and emotional demands of living with a chronic illness. Your child may: struggle to concentrate take longer to complete work need more breaks find busy school days exhausting have difficulty with homework after school seem less motivated when they are actually exhausted. It can be helpful for teachers to understand that fatigue is a genuine symptom of IBD. Your child may need temporary adjustments during periods when fatigue is particularly severe. 📅 What happens when your child misses school? IBD can involve more absences than other children may have. Your child may miss school because of: IBD flares gastroenterology appointments blood tests or other investigations hospital visits procedures treatment side effects significant fatigue or pain infections or other illnesses. Missing school can be stressful, particularly when your child is already worried about falling behind. Talk to the school about how missed work will be managed. It may help to have a simple plan for: accessing missed classwork prioritising essential work extending deadlines when needed catching up gradually communicating with teachers avoiding an overwhelming pile-up of work. Your child does not need to complete every missed piece of work immediately after returning to school. 🔄 Returning to school after a flare Going back to school after an IBD flare can be difficult. Even when your child is feeling better, they may still have: fatigue anxiety about needing the toilet reduced confidence difficulty concentrating worries about having an accident missed schoolwork to catch up on. A gradual return may sometimes be appropriate, depending on your child’s health and what their IBD team recommends. Before they return, consider talking with the school about: toilet access reduced workload catching up on essential work rest breaks PE and sport medication during school hours what to do if symptoms suddenly return. 📚 Helping your child keep up with schoolwork IBD should not automatically mean your child has to fall behind academically. However, symptoms and absences can make keeping up harder. Ask the school to help distinguish between essential work and work that can wait . Your child may benefit from: access to online learning materials copies of class notes flexible deadlines extra time for assessments help prioritising missed work catch-up sessions reduced homework during difficult periods. If your child is struggling academically, don’t assume they are simply not trying. Pain, fatigue, poor sleep, anxiety and active inflammation can all affect concentration and learning. 📝 Tests, exams and assignments Exams and major assignments can create additional stress for a child with IBD. Your child may need support if symptoms or medical appointments interfere with preparation or attendance. Speak with the school early about possible adjustments, particularly if your child has frequent symptoms or a significant flare. Depending on your child’s circumstances and local education system, support may include: extra time rest breaks access to a toilet alternative arrangements if they are unwell extensions catch-up assessments a quieter environment. The specific adjustments available will vary between schools and countries. 🏃 Sport, PE and physical activity Having IBD does not automatically mean your child needs to avoid sport. Many children with Crohn’s disease or ulcerative colitis enjoy sport and physical activity. However, your child’s ability to participate may change depending on how they are feeling. During a flare, they may experience pain, urgency, fatigue or reduced energy. Talk with the school about allowing your child to: sit out when they are genuinely unwell take breaks access water use the toilet when needed modify activities temporarily return to activity gradually after illness. Your child’s IBD team can provide individual advice if there are concerns about exercise or participation. 💊 Medication at school Some children need medication during the school day. Make sure the school knows: which medication needs to be given when it should be taken how it should be stored who is responsible for administering it what to do if a dose is missed or vomited who to contact if there is a problem. Medication arrangements will depend on your child’s school, age, treatment and local requirements. Your child’s IBD team can also help with questions about medications and school. 🤝 Friends and social life Sometimes the hardest part of having IBD at school isn’t the schoolwork. It can be feeling different from everyone else. Your child may worry about: friends asking why they are absent needing the toilet during class having an accident taking medication losing weight or looking different being unable to join activities explaining Crohn’s disease or ulcerative colitis. Your child should be able to choose who they tell and how much they share. You can help them develop a simple explanation they feel comfortable using. For example: “I have a condition called IBD that affects my digestive system. Sometimes it means I need the toilet more often or have to miss school.” They don’t have to explain everything. 💛 What if your child feels embarrassed? Embarrassment is common, particularly for older children and teenagers. Try not to dismiss their worries with “Nobody cares” or “Don’t worry about it.” Instead, listen. Ask: “What are you most worried might happen?” Sometimes the specific worry can be addressed with a practical solution. For example: Worried about toilet access → create a clear toilet plan. Worried about an accident → keep spare underwear and clothes at school. Worried about questions → practise a simple explanation. Worried about missing work → create a catch-up plan. Worried about PE → talk with the teacher beforehand. Small practical changes can make school feel much safer. 🧠 Mental wellbeing matters too Living with IBD can affect how a child feels about school, friendships and themselves. Your child may experience: anxiety embarrassment frustration sadness isolation fear of having a flare at school worries about being different stress about falling behind. Pay attention to changes in behaviour as well as what your child tells you. If you are concerned about your child’s mental wellbeing, speak with their IBD team and ask what psychological or counselling support is available. 🗣️ How much should your child be involved? As children get older, they should gradually become more involved in managing their IBD at school. A younger child may need you to communicate with teachers. A teenager may want more privacy and control over who knows about their condition. You can gradually help them learn to: explain what IBD is recognise their symptoms know when they need the toilet carry or manage medication where appropriate speak to a teacher when they need help tell someone when they are becoming unwell advocate for reasonable support. This is part of preparing them for managing IBD independently as they grow. 👩🏫 Helping teachers understand IBD Teachers don’t need to become IBD experts. But they should understand the basics of how your child’s condition can affect school. They may need to know that: IBD is a chronic medical condition. Symptoms can change over time. Your child may need urgent toilet access. Fatigue can affect concentration and learning. Absences may be related to medical care or flares. Your child may sometimes look well while still experiencing symptoms. Accidents can happen and should be handled privately and respectfully. Your child may need temporary adjustments during a flare. You can provide the school with information from your child’s healthcare team where appropriate. 🧰 Create a school support plan A written school support plan can make things easier for everyone. It might include: Medical information diagnosis relevant symptoms medications emergency contacts IBD team contact details where appropriate. Toilet access how your child can leave class which toilets they can use what happens during urgency. Flares what symptoms may occur who should be contacted what your child needs if they become unwell. Learning how missed work will be provided arrangements for assessments flexibility around deadlines. PE and activities when your child may need to modify activities access to water and breaks what happens during a flare. Emotional support who your child can talk to if they are worried or embarrassed. You don’t need to create a complicated document. The most useful plan is one that is clear, practical and easy for school staff to follow. 📥 Download our school support resources IBD Kids has practical resources designed to support children and families living with IBD. Visit our downloads page to explore free helpful resources, guides and templates for home, school and everyday life with IBD. 📝 What should I tell the school? You don’t have to share every detail of your child’s medical history. Focus on information that helps the school support them safely. Consider explaining: what IBD is your child’s main symptoms toilet needs medication requirements what happens during a flare fatigue or other symptoms that affect learning what to do if your child becomes unwell who to contact what your child wants teachers and classmates to know. Your child’s privacy matters too. As they get older, involve them in deciding what information is shared. 💬 Start the conversation early You don’t have to wait until your child is struggling. It can be helpful to speak with the school when your child is first diagnosed and then update the plan if their needs change. A short conversation now can prevent a lot of stress later. And remember that your child’s needs may change. A child who needs very little support while in remission may need considerably more help during an IBD flare. ❤️ Your child is more than their IBD IBD is one part of your child’s life. It doesn’t have to define their school experience. Your child may have difficult days, missed days and times when their symptoms get in the way. But with the right support, they can still learn, make friends, play sport, go on camps, participate in school activities and build their independence. The goal isn’t to make school perfect. It’s to make sure your child feels safe, understood and supported enough to take part in school life. 🌱 Remember You don’t have to manage school and IBD on your own. Work with your child’s IBD team and school to create a plan that reflects your child’s individual needs. And as your child grows, keep bringing them into the conversation. Their needs, confidence and independence will change — and their school support can change with them. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Appointments Your first gastroenterology appointment: What to expect Find out what to expect, what to bring, what questions to ask and how to prepare for tests and discussions about possible IBD. Taking your child to their first paediatric gastroenterology appointment? Here’s what parents can expect, what to bring and the questions worth asking. If your child has been referred to a paediatric gastroenterologist, you may be wondering what will happen at the first appointment. You might be worried about what the doctor will ask, whether your child will need more tests, or what the appointment means for your child’s possible IBD diagnosis. It’s completely normal to feel unsure. The first gastroenterology appointment is usually about getting to know your child’s symptoms, medical history and overall health , working out what investigations may be needed and deciding what happens next. You don’t need to have all the answers. 🩺 What is a paediatric gastroenterologist? A paediatric gastroenterologist is a doctor who specialises in conditions affecting the digestive system in babies, children and teenagers. They may see children with symptoms such as: Ongoing diarrhoea Abdominal pain Blood or mucus in the stool Constipation Poor appetite Weight loss Difficulty gaining weight Poor growth Persistent vomiting Unexplained fatigue Possible inflammatory bowel disease (IBD) If your child is being investigated for Crohn’s disease or ulcerative colitis, the paediatric gastroenterologist will help determine what may be causing their symptoms and whether further testing is needed. 📋 Before the appointment A little preparation can make the appointment much easier. You may want to write down your child’s symptoms. Include: When the symptoms started How often they happen Whether they are getting better or worse Bowel movement frequency Diarrhoea or constipation Blood or mucus in the stool Abdominal pain Urgency to use the toilet Appetite Energy levels Weight changes Sleep Any symptoms outside the digestive system Don’t worry about making your notes perfect. Even a few brief notes can be helpful. 💊 Bring a medication and supplement list Write down everything your child takes, including: Prescription medications Over-the-counter medications Vitamins Iron supplements Probiotics Other supplements Include the dose and how often your child takes each one if you know it. If you’re unsure about a medication or supplement, bring the packaging or take a photo of the label. 🧪 Bring any test results you have Depending on why your child has been referred, they may already have had blood tests, stool tests or other investigations. If you have copies of the results, take them with you. Your child’s doctor may be particularly interested in things such as: Full blood count Iron studies Inflammatory markers such as CRP and ESR Faecal calprotectin Stool infection testing Coeliac testing Liver and kidney tests You don’t need to understand the results yourself. The gastroenterologist can explain what they mean. 👩⚕️ What happens during the appointment? Every appointment is different, but your child’s first gastroenterology appointment will usually involve a detailed conversation and physical examination. The doctor may ask about your child’s medical history. They may ask about previous illnesses, infections, hospital admissions, medications and other medical conditions. Family history You may be asked whether anyone in your family has: IBD Crohn’s disease Ulcerative colitis Coeliac disease Other autoimmune conditions Other gastrointestinal conditions Bowel symptoms Expect questions about your child’s bowel movements. This might feel awkward, but these details are important. The doctor may ask: How often does your child poo? What does it look like? Is there blood? Is there mucus? Is there urgency? Does your child have accidents? Does your child wake during the night to use the toilet? Does your child have pain before or during bowel movements? Try to be as honest and specific as possible. There are no embarrassing questions when it comes to your child’s health. 📈 Your child’s growth will probably be checked Because children are still growing, growth is an important part of paediatric gastroenterology . The doctor may check your child’s: Height Weight Growth pattern Body mass index Pubertal development, depending on their age They may compare these measurements with previous measurements to see whether your child is growing as expected. This is particularly important when investigating possible IBD because ongoing inflammation can sometimes affect appetite, nutrition and growth. 🩺 Your child may have a physical examination The doctor may examine your child’s abdomen and check for things such as tenderness or swelling. Depending on your child’s symptoms, they may also examine other parts of the body. This doesn’t necessarily mean that something serious has been found. A physical examination is simply one part of understanding the bigger picture. 🧪 Will my child need more tests? Possibly. The gastroenterologist will decide what investigations are appropriate based on your child’s symptoms, examination and previous test results. Tests may include: Blood tests These can provide information about inflammation, anaemia, iron levels, nutrition and your child’s general health. Stool tests A stool sample may be used to look for infection and to measure faecal calprotectin, which can provide information about inflammation in the intestines. Ultrasound or MRI Imaging may be recommended depending on your child’s symptoms and what the doctor needs to investigate. Sometimes the ultrasound may be done at your appointment with your gastroenterologist if they have a machine available. Endoscopy or colonoscopy Some children may need an endoscopy, colonoscopy or both. These procedures allow doctors to look inside the digestive tract and take small tissue samples called biopsies. Not every child will need every test. Your gastroenterologist will explain which investigations they recommend and why. 🔎 What if my child hasn’t been diagnosed with IBD yet? This is important to remember. Being referred to a gastroenterologist doesn’t automatically mean your child has IBD . There are many different conditions that can cause digestive symptoms in children. Your gastroenterologist will consider your child’s symptoms, medical history, examination and test results before deciding what needs to happen next. If IBD is suspected, they may recommend further testing to determine whether your child has Crohn’s disease, ulcerative colitis or another condition. 💬 What should I ask? It can be difficult to remember questions during an appointment, so write them down beforehand. You could ask: What do you think is causing my child’s symptoms? Are you concerned about IBD? What other conditions could cause these symptoms? What tests does my child need? What will each test tell us? Does my child need a colonoscopy or endoscopy? How long will it take to get the results? Is my child’s growth on track? Are there any foods we should avoid? Should my child see a dietitian? Can my child continue normal activities and sport? What symptoms should make us contact you? What should we do if their symptoms suddenly get worse? When should we come back? You don’t need to ask all of these. Choose the questions that are most relevant to your child. 📝 What should I write down during the appointment? There can be a lot of information to take in. Consider keeping a note on your phone or bringing a notebook. Write down: What the doctor thinks What are the possible causes of your child’s symptoms? What tests are being ordered Write down what each test is for. What happens next Make sure you know what you are waiting for and when you should expect to hear back. Who to contact Ask who you should contact if your child’s symptoms get worse before the next appointment. The next appointment Write down the date and time before you leave. 👧 Should my child be involved? Yes, when appropriate for their age. Even young children can be included in conversations about their health. Older children and teenagers may appreciate being given the opportunity to answer some questions themselves. It can also help them begin learning how to talk about their symptoms and understand their own healthcare. You can ask the gastroenterologist to explain things directly to your child in language they understand. This can be an important first step towards independence with their IBD care if they are eventually diagnosed. ❤️ What if the appointment feels overwhelming? It can be a lot. You may hear unfamiliar words, be asked questions you haven’t thought about and leave with more questions than you arrived with. That’s okay. You can ask: “Can you explain that in simpler terms?” “Can you write that down for me?” “What are the most important things I need to remember?” “Who should I contact if I think my child’s symptoms are getting worse?” You don’t need to understand everything before you leave. 🎒 What to bring to your child’s first gastro appointment Here’s a simple checklist: ☐ List of medications and supplements ☐ Recent blood test results ☐ Stool test results ☐ List of symptoms ☐ Notes about bowel movements ☐ Questions you want to ask ☐ Your child’s Medicare or healthcare information, if required ☐ A notebook or phone for taking notes ☐ Something for your child to do while waiting ☐ Any relevant letters or referral information ⭐ One thing to remember Your first gastroenterology appointment is not a test that you have to pass. You don’t need to know all the medical terminology. You don’t need to remember every detail of your child’s symptoms. And you don’t need to have everything figured out. Your job is simply to share what you’ve noticed, ask questions and work with the healthcare team to understand what happens next . If your child is being investigated for IBD, the first appointment may be the beginning of a longer process of testing and monitoring. And if your child is eventually diagnosed with Crohn’s disease or ulcerative colitis, their gastroenterology team will help you understand the diagnosis and develop a treatment plan. Take your questions with you. Take notes. And don’t be afraid to ask for something to be explained again. You are your child’s most important advocate. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

School What should I tell my child’s school? What to share about Crohn’s disease or ulcerative colitis, including toilet access, fatigue, flares, medication, absences, exams, PE and emotional wellbeing. Your child has IBD — but how much does the school actually need to know? Here’s what parents should consider sharing about Crohn’s disease, ulcerative colitis, symptoms, treatment and the support your child may need. Telling your child’s school that they have IBD can feel complicated. You may wonder: “Do I need to tell all their teachers?” “What if my child doesn’t want other people to know?” “How much medical information should I share?” There is no one-size-fits-all answer. Your child’s privacy matters, but sharing the right information with the right people can make school much easier and safer for your child. The goal isn’t to give the school your child’s entire medical history. It’s to make sure the people who need to support your child understand what they may experience, what they need and what to do if they become unwell. 🏫 Who needs to know? You don’t necessarily need to tell every person at school. Depending on your child’s age and needs, it may be helpful to speak with: their classroom teacher year-level or pastoral care staff the school principal or relevant coordinator the school nurse, where available PE and sports teachers staff responsible for excursions and camps staff who may administer medication. For younger children, you may take the lead in communicating with the school. Older children and teenagers may want more control over who knows about their IBD. Where possible, involve your child in deciding what information is shared. 🩺 Start with the basics Teachers don’t need a medical textbook. Start with a simple explanation. You might explain that your child has inflammatory bowel disease (IBD) , which includes Crohn’s disease and ulcerative colitis. IBD is a chronic condition that can cause inflammation in the digestive system. Your child may have periods when they feel well and periods when symptoms become more difficult. You can then explain how IBD affects your child specifically . For example: “My child has Crohn’s disease. Most of the time they are able to participate normally at school, but during periods of active disease they may experience abdominal pain, diarrhoea, urgency and fatigue.” Keeping the explanation focused on your child’s needs can be more useful than giving the school lots of general medical information. 🚽 Explain their toilet needs For many children with IBD, toilet access is one of the most important things the school needs to understand. During an IBD flare, your child may suddenly need to use the toilet. They may not be able to wait until the end of a lesson or ask permission in the usual way. Make sure the relevant staff know: your child needs immediate toilet access whether they need a toilet pass or another arrangement which toilets they can use who they should speak to if there is a problem what to do if your child has an accident. Your child should not have to repeatedly explain their medical condition every time they need to leave the classroom. 😴 Explain fatigue Fatigue can be an important symptom of IBD, but it isn’t always obvious. Your child may look perfectly well while still feeling exhausted. Fatigue can affect: concentration memory learning participation homework PE and physical activities their ability to cope with a full school day. Let the school know if fatigue is something your child experiences. You might explain: “Fatigue is one of my child’s IBD symptoms. If they are unusually tired, it may affect their concentration and ability to complete work.” This helps teachers understand that changes in performance aren’t necessarily about motivation or behaviour. 🔥 Explain what happens during a flare Your child’s school should know what an IBD flare may look like for them. This could include: more frequent bowel movements diarrhoea urgency abdominal pain blood or mucus in the stool fatigue reduced appetite nausea difficulty concentrating. Your child’s symptoms may be different from another child’s symptoms. Tell the school what they should expect from your child and what you would like them to do if symptoms suddenly become worse. 💊 Tell them about medication If your child takes medication during school hours, the school needs clear instructions about the arrangements. Depending on your child’s medication and school policies, this may include: what medication they take when it needs to be taken who administers it where it is stored what happens if a dose is missed who to contact if there is a problem. You don’t necessarily need to explain every medication your child takes if it isn’t relevant to school. Focus on what school staff need to know to support your child safely. 🧪 What about medical appointments? IBD can involve regular appointments, blood tests, stool tests, scans, procedures and hospital visits. Your child may therefore miss school even when they aren’t experiencing a flare. It can help to explain that some absences are related to ongoing medical care. Ask the school how you should communicate planned appointments and how your child can access missed work. 📚 Explain what happens when they miss school One of the most helpful things you can do is agree on a plan for missed work. Ask: How will my child access missed classwork? Who will provide it? Can teachers prioritise essential work? What happens with homework? Can deadlines be extended? What happens if my child misses an assessment? Who should we contact if they are away for several days? Your child may already be worried about falling behind. Having a clear process can take some of that pressure away. 📝 Talk about exams and assessments If your child has frequent symptoms, significant fatigue or regular medical appointments, it may be useful to discuss assessment arrangements before a problem occurs. Depending on the school and your child’s circumstances, support might include: extra time rest breaks access to a toilet alternative assessment arrangements extensions catch-up assessments flexibility when your child is experiencing significant symptoms. Available adjustments vary between countries and schools, so ask what support your child’s school can provide. 🏃 What about PE and sport? Your child doesn’t automatically need to avoid PE because they have IBD. However, their ability to participate may change during a flare or when they are experiencing significant fatigue or pain. Let the school know if your child needs to: take breaks access water use the toilet immediately modify an activity sit out when they are genuinely unwell return to exercise gradually after illness. If your child’s IBD team has given specific advice about physical activity, share this with the relevant staff. 🏕️ Don’t forget camps and excursions School camps and excursions can create extra worries for children with IBD. Before a trip, consider discussing: toilet access medication food requirements emergency contacts what happens if symptoms suddenly worsen access to a bathroom overnight privacy when changing or showering what happens if your child needs to go home. Planning ahead can help your child participate without feeling like their IBD is stopping them from joining in. 🤐 What if my child doesn’t want anyone to know? This can be one of the hardest parts. Older children and teenagers may be very protective of their privacy. They may worry about being treated differently, being teased or having classmates find out about their bowel symptoms. Try to understand what your child is actually worried about . You could ask: “Who would you be comfortable knowing?” “What are you worried might happen if they know?” “What information would you like me to keep private?” You can then work together on what needs to be shared. Your child may be happy for the year coordinator to know but not want their entire class told. They may want teachers to know they need unrestricted toilet access but not want anyone discussing their diagnosis with classmates. Those preferences are worth discussing. 💬 Give your child a simple explanation Some children prefer to tell friends themselves. It can help to practise a short explanation they can use if someone asks questions. For example: “I have IBD, which affects my gut. Sometimes I need the toilet more often or have to miss school.” They can then decide whether they want to say more. They don’t owe anyone a detailed explanation of their symptoms, treatment or medical history. 🧠 Talk about emotional wellbeing IBD can affect more than your child’s physical health. School can become stressful if your child is worried about: having an accident needing the toilet being away from friends falling behind being different medication body changes eating at school PE or swimming being asked questions about their illness. Let the school know if your child is experiencing significant anxiety or distress. A trusted staff member can provide an important point of contact during the school day. 📋 Put important information in writing After talking with the school, it can be useful to have the key arrangements written down. A simple school support plan might include: Medical information diagnosis relevant symptoms medications needed at school emergency contacts. Toilet access unrestricted access toilet pass or agreed arrangement preferred toilets. During a flare symptoms to watch for who to contact what your child needs. Learning missed-work arrangements assessment adjustments communication with teachers. Sport and activities when your child may need to modify activities access to breaks, water and toilets. Emotional support who your child can speak to if they are worried or struggling. You can update the plan as your child’s needs change. 👩🏫 Give teachers practical information A teacher may never have taught a child with IBD before. A short, practical explanation can be more useful than a long list of medical information. Make sure they understand these key points: IBD can be unpredictable. Your child’s symptoms may change over time. Your child may need the toilet urgently. They should not be made to wait. Your child may experience fatigue. This can affect concentration and learning. Your child may need medical appointments. Absences aren’t necessarily related to poor attendance or lack of engagement. Your child may look well. IBD symptoms aren’t always visible. Accidents can happen. They should be handled privately and respectfully. Your child’s needs may change. Support that isn’t needed today may become important during a flare. ❤️ Protect your child’s dignity One of the most important things to communicate to school staff is that your child should be treated with dignity. They should not be singled out unnecessarily. They should not be publicly questioned about their symptoms. They should not be embarrassed for needing the toilet. And they should not feel that having IBD means they are incapable of participating in school life. Small details can make a big difference. A teacher quietly allowing a child to leave the classroom can be much less stressful than making them ask publicly. A private conversation after an accident can be much less distressing than drawing attention to what happened. 📥 Download the IBD School Support Plan We’ve created a practical IBD School Support Plan that you can use to communicate your child’s needs with their school. It provides space to record important information about: your child’s IBD symptoms toilet access medication flares fatigue learning and absences PE and activities camps and excursions emotional wellbeing emergency contacts additional support needs. IBD School Support Plan for Parents .pdf Download PDF • 328KB Take the completed plan to your child’s school and use it as a starting point for a conversation about how they can best support your child. 📝 A simple checklist for parents Before speaking with the school, think about these questions: ☐ What does my child need the school to know about their IBD? ☐ Who needs to know? ☐ Does my child need unrestricted toilet access? ☐ Do they need medication during school hours? ☐ What symptoms might affect their school day? ☐ What happens when they are having an IBD flare? ☐ How will missed work be managed? ☐ Do they need support with fatigue? ☐ Are there any PE or sport considerations? ☐ What support might they need for exams or assessments? ☐ What happens if they have an accident? ☐ Who should my child go to if they feel unwell or overwhelmed? ☐ What does my child want kept private? ☐ Do we need a written school support plan? 💛 You don’t have to tell them everything You don’t need to give the school every detail about your child’s IBD. Think about what they need to know to support your child well. Start with the practical things: toilet access, symptoms, fatigue, medication, absences and what to do if your child becomes unwell. Then consider your child’s privacy, age and preferences. The aim is to create a school environment where your child can say: “My teachers understand what I need, and I don’t have to be embarrassed about it.” That’s what good school support should look like. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Food & Nutrition What should my child eat with IBD? Wondering what your child should eat with IBD? Learn about food and nutrition for children with Crohn’s disease and ulcerative colitis, including eating during flares, supporting growth, avoiding unnecessary restrictions and when to see an IBD dietitian. “What should my child eat?” is one of the first questions many parents ask after an IBD diagnosis. It can be especially difficult when your child has Crohn’s disease or ulcerative colitis and certain foods seem to make their symptoms worse. The good news is that there isn’t one universal IBD diet for children . What works for one child may not work for another, and what your child tolerates can change depending on whether their IBD is active or in remission. For children with IBD, the goal isn’t simply to find foods that don’t cause symptoms. Good nutrition is also about getting enough energy, protein, vitamins and minerals to support growth, development, healing and everyday life. 🥗 There isn’t one “IBD diet” Crohn’s disease and ulcerative colitis affect children differently, and food tolerance can vary enormously. There is currently no single diet that every child with IBD should follow. Your child’s food choices may depend on: whether their IBD is active or in remission where their inflammation is located their symptoms whether they have complications such as a narrowing of the bowel their growth and weight nutritional deficiencies food allergies or intolerances their medications cultural and family food preferences. Some specialised nutrition approaches can be used in paediatric IBD, including exclusive enteral nutrition (EEN) for some children with Crohn’s disease. These should only be undertaken with guidance from your child’s IBD team and dietitian. 🌱 What should my child eat when they are well? When your child’s IBD is well controlled, the aim is generally to have as varied and nutritious a diet as they can comfortably tolerate. A balanced diet can include foods from a range of food groups. 🍗 Protein Protein helps children grow and repair body tissues. Depending on what your child eats and tolerates, protein can come from: chicken and other poultry fish and seafood eggs meat dairy or dairy alternatives tofu and other soy foods beans and lentils nuts and nut butters seeds. Children with active IBD may have increased nutritional needs, so adequate protein and overall energy intake can be particularly important. 🍞 Carbohydrates and grains Carbohydrates provide energy for growing bodies. Depending on your child’s tolerance, these might include: bread rice pasta oats cereals potatoes sweet potatoes other grains. There is no need to automatically remove gluten or grains from your child’s diet unless their healthcare team has identified a specific reason to do so. 🍎 Fruit and vegetables Fruit and vegetables provide important vitamins, minerals and fibre. Some children tolerate them easily, while others may find certain types difficult during an IBD flare. You may find that your child tolerates: cooked vegetables better than raw peeled fruit better than fruit with skin softer foods better than crunchy foods smaller portions better than large amounts. This doesn’t mean your child needs to avoid fruit and vegetables permanently. Sometimes changing the type, texture or amount can make a food easier to tolerate. 🥑 Healthy fats Fats provide energy and help the body absorb certain vitamins. Depending on tolerance, examples include: avocado olive oil nut butters nuts and seeds oily fish. For children who are struggling to maintain their weight, adding energy-dense foods can sometimes help increase calories without requiring a much larger meal. Your child’s dietitian can help you work out what is appropriate. 🔥 What about food during an IBD flare? Eating during a flare can be difficult. Your child may have: diarrhoea abdominal pain nausea urgency reduced appetite fatigue weight loss. Some foods may make symptoms feel worse, even though the food itself isn’t causing the underlying inflammation. During a flare, some children find that smaller, more frequent meals are easier to manage than large meals. Softer or lower-fibre versions of foods may also be better tolerated temporarily. For example, your child might tolerate: cooked vegetables rather than raw vegetables smooth nut butter rather than whole nuts peeled or cooked fruit rather than fruit with tough skins white rice or pasta potatoes without skins eggs fish or tender chicken soups or smoothies, if tolerated. These are examples rather than a required “flare diet.” Your child’s individual tolerance matters. 💧 Don’t forget fluids Diarrhoea and vomiting can increase the risk of dehydration. Encourage your child to drink regularly, and ask their healthcare team what fluids or oral rehydration products are appropriate if they are losing a lot of fluid. Signs of dehydration can include: very dark urine urinating less often dry mouth dizziness unusual sleepiness or weakness. If your child is significantly dehydrated or unable to keep fluids down, seek medical advice promptly. 🚫 Does my child need to avoid certain foods? This is one of the hardest parts of IBD nutrition. You may hear that children with IBD should avoid: dairy gluten sugar spicy foods fruit vegetables fibre processed foods red meat. But there isn’t a universal list of foods that every child with Crohn’s disease or ulcerative colitis needs to avoid. Some foods can worsen symptoms for an individual child, particularly during a flare, but that doesn’t necessarily mean the food is causing their IBD or intestinal inflammation. If you notice a consistent pattern with a particular food, talk to your child’s IBD team or dietitian before removing it permanently. 📝 Keep a food and symptom diary If you’re struggling to work out whether certain foods are affecting your child’s symptoms, a simple food and symptom diary can be useful. You could record: Food: What did my child eat? Symptoms: What happened afterwards? Bowel movements: How often? Any blood or mucus? Pain: Was there abdominal pain or cramping? Other: Appetite, energy, nausea or urgency. Try to look for patterns over time , rather than assuming that one difficult day means a particular food is a problem. A food diary can also help your dietitian identify whether removing a food has created a nutritional gap. ⚖️ Be careful about restrictive diets It’s understandable to want to try anything that might help your child. But removing lots of foods can create problems, particularly for growing children. Restrictive diets can increase the risk of: inadequate calorie intake vitamin and mineral deficiencies weight loss malnutrition anxiety around food disordered eating. This is particularly important in children because nutrition supports both growth and development . If you’re considering a specific IBD diet, speak with your child’s IBD team or an IBD-focused paediatric dietitian first. 📈 What about weight and growth? Growth is an important part of managing paediatric IBD. Your child’s healthcare team may regularly monitor: weight height growth patterns appetite nutritional intake puberty and development iron and other vitamin or mineral levels. Poor growth or unexpected weight loss can sometimes be a sign that your child isn’t getting enough nutrition or that their IBD isn’t adequately controlled. If you’re worried that your child isn’t eating enough, don’t wait until their next routine appointment to ask for help. 🧲 What about vitamins and minerals? Children with IBD can be at risk of nutritional deficiencies. Depending on your child’s IBD, diet and treatment, their healthcare team may monitor nutrients such as: iron vitamin D calcium vitamin B12 folate zinc. Some children may need supplements, but don’t automatically start a long list of vitamins or supplements . The right supplement and dose depend on your child’s age, diet, blood results, medication and individual needs. Some supplements can also interact with medications. 🥛 What if my child can’t eat dairy? Some children with IBD tolerate dairy perfectly well. Others may have lactose intolerance or another reason to avoid dairy. If dairy is removed, it’s important to think about what will replace the nutrients it provides, particularly calcium, vitamin D and protein . A dietitian can help you choose suitable alternatives. The same principle applies to any food group your child needs to avoid. Don’t just remove it — replace the nutrients. 🍽️ What if my child barely wants to eat? A poor appetite can happen during an IBD flare. Rather than expecting your child to eat three large meals, you could try offering smaller meals and snacks throughout the day. Energy and protein can sometimes be increased by adding nutrient-dense foods your child tolerates. For example: nut butter avocado eggs olive oil yoghurt or a suitable alternative cheese or a suitable alternative smoothies nutritional supplements recommended by your healthcare team. If your child is losing weight, eating very little or struggling to meet their nutritional needs, ask for help from their IBD team or dietitian. Some children may need nutritional support therapy , including oral nutritional supplements or, in some circumstances, enteral nutrition. 🧒 Let your child have a say Food can quickly become a source of stress after an IBD diagnosis. Where possible, involve your child in decisions about food. Depending on their age, they can: choose meals help with shopping prepare simple foods read food labels help plan school lunches identify foods they tolerate learn what their body feels like when they’re hungry or full. This can help children gradually develop the skills they’ll need to manage food and nutrition independently as they grow older. 🎂 Can my child still eat birthday cake and have treats? Yes. Having IBD doesn’t mean your child can never enjoy birthday parties, holidays, restaurants or their favourite foods. Food is about much more than nutrition. It’s also about family, friendships, culture, celebrations and enjoyment . If a particular food regularly causes symptoms, you can work with your child and their dietitian to find an alternative. The goal isn’t to make food frightening or complicated. It’s to help your child get the nutrition they need while still enjoying food and participating in everyday life. 🏫 What about school lunches? School can make food more complicated. Your child may need: access to the toilet extra snacks access to fluids a packed lunch medication during the school day flexibility around eating during a flare. If your child has significant dietary or nutritional needs, speak with their school and healthcare team about what support would be helpful. 💬 When should I ask for help? Speak with your child’s IBD team or dietitian if your child: is losing weight isn’t growing as expected has a significant drop in appetite is avoiding many foods has ongoing diarrhoea or vomiting is struggling to eat during a flare has ongoing abdominal pain around meals has suspected food intolerances has nutritional deficiencies is becoming anxious or fearful around food. You don’t have to work this out on your own. ❤️ The most important thing to remember There is no perfect IBD diet for children . Your child’s nutritional needs will change as they grow, and what they tolerate may change between a flare and remission. Rather than focusing on a long list of foods your child can’t eat, try to focus on: Enough food. Enough nutrients. Enough variety. Enough fluids. Enough flexibility to enjoy being a kid. And if you’re worried about your child’s nutrition, ask for help. An IBD-focused paediatric dietitian can work with your child’s gastroenterology team to create a plan that supports growth, nutrition and IBD treatment while fitting your child’s individual needs. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Flares My child might be having a flare: What should I do? Think your child with IBD might be having a flare? Learn what symptoms to look for, what to do next, when to contact your child’s IBD team and when urgent medical care may be needed. Your child has IBD and their symptoms have suddenly changed. Could it be a flare? Here’s what parents should know about recognising a possible IBD flare, what to do next and when to contact your child’s healthcare team. One of the biggest worries after your child is diagnosed with Crohn’s disease or ulcerative colitis is knowing what to do when they suddenly become unwell. Maybe they’re going to the toilet more often. Perhaps you’ve noticed blood or mucus in their stool. They might be complaining about tummy pain, feeling unusually tired or losing their appetite. And you’re wondering: “Is this an IBD flare?” You don’t need to work that out on your own. The most important thing is to recognise changes, know your child’s usual symptoms and contact their IBD team when you’re concerned. 🔥 What is an IBD flare? An IBD flare is a period when the disease becomes more active and there is increased inflammation in the digestive tract. A flare can look different from one child to another. Some children have obvious symptoms, while others may have changes that are more subtle. Symptoms can include: More frequent bowel movements Diarrhoea Blood in the stool Mucus in the stool Abdominal pain or cramping Increased urgency Accidents or difficulty getting to the toilet in time Reduced appetite Fatigue Weight loss Fever Waking during the night to use the toilet Your child’s symptoms may not be exactly the same each time. 🧐 First: look for a change from your child’s normal You know your child best. If they are usually having two bowel movements a day and suddenly they’re having six, that’s important information. If they normally have plenty of energy but suddenly they’re exhausted, that’s worth paying attention to. If they’ve been in remission and new symptoms have appeared, tell their IBD team. You don’t need to wait until symptoms become severe before asking for advice. 💩 Keep track of bowel movements If you think your child may be having a flare, it can help to keep a simple record. Write down: How often? How many bowel movements are they having? What does it look like? Is it formed, loose or watery? Is there blood? Note whether you see blood and how much. Is there mucus? Note whether you see mucus and whether it is new or happening more often than usual. Is there urgency? Are they suddenly struggling to get to the toilet in time? Are they waking overnight? You don’t need to become obsessed with tracking every bowel movement. A simple record for a few days can give your healthcare team useful information. 🩸 What if there is blood? Blood in the stool can occur with ulcerative colitis and Crohn’s disease, particularly when the bowel is inflamed. If your child has IBD and you notice new or increasing blood in their stool, contact their healthcare team for advice. Tell them: When you first noticed it How often it is happening Whether it is getting worse Whether your child has other symptoms Whether they are having more bowel movements than usual Blood in the stool doesn’t always mean your child is having an IBD flare. Infections and other problems can also cause bleeding. Your child’s healthcare team can help determine what needs to happen next. 🤢 Could it be a stomach bug instead? This is one of the hardest things for parents to work out. Diarrhoea, abdominal pain, nausea and fever can happen with infections as well as IBD flares . This is why your child’s doctor may recommend stool testing when symptoms suddenly change. Don’t assume every episode of diarrhoea is an IBD flare — and don’t assume it is a stomach bug either. Contact your child’s healthcare team if you’re unsure. 📞 Contact your IBD team If your child’s symptoms are changing, your IBD team is the best place to get advice about what to do next. They may want to know about: Bowel movement frequency Blood or mucus Abdominal pain Appetite Energy Weight Fever Medication Recent infections How long symptoms have been happening Depending on the situation, they may recommend monitoring your child, arranging blood or stool tests, reviewing their medication or seeing them in clinic. 💊 Don’t change medication on your own If you think your child is having a flare, you may be tempted to increase their medication or restart an old medication that worked previously. Don’t make medication changes without speaking with your child’s healthcare team. Your child’s treatment plan may depend on what is causing their symptoms and how active the inflammation is. Some medications also need to be changed carefully rather than suddenly stopped or restarted. If you have been given a specific flare plan by your child’s IBD team, follow that plan and contact them if you are unsure what to do. 💧 Keep an eye on hydration Diarrhoea and frequent bowel movements can cause children to lose fluids. Encourage your child to drink regularly. Watch for signs that they may be becoming dehydrated, such as: Very dark urine Passing urine much less often Dry mouth Dizziness Unusual sleepiness Weakness Being unable to keep fluids down If you’re concerned that your child may be dehydrated, seek medical advice promptly. 🍽️ What should my child eat during a possible flare? There isn’t one food or diet that is right for every child with IBD. When your child is unwell, the priority is generally making sure they can drink and maintain adequate nutrition , while following any advice your child’s healthcare team has already given you. Your child may temporarily tolerate some foods better than others. Try not to introduce a highly restrictive diet without guidance from your child’s gastroenterologist or IBD dietitian. If your child is eating very little, losing weight or struggling to maintain nutrition, contact their healthcare team. 😴 What about fatigue? Fatigue can be an important symptom of active IBD. Your child may: Sleep more than usual Struggle to get through the school day Have difficulty concentrating Stop wanting to play Need more rest after normal activities Fatigue can have many causes, including active inflammation and anaemia. If your child’s energy levels have changed significantly, tell their healthcare team. 📚 What about school? If your child is having increased symptoms, they may need some flexibility at school. You may need to arrange: Easy access to a toilet Extra bathroom breaks Rest breaks Reduced workload temporarily Help catching up after absences Flexibility around appointments You don’t have to wait until your child has missed a lot of school before talking to their teacher or school support team. Your child’s needs may change depending on how they’re feeling. 🚨 When should I seek urgent medical help? Your child’s IBD team should give you specific instructions about when to seek urgent care. In general, seek urgent medical attention if your child is very unwell or deteriorating , particularly if they have symptoms such as: Severe or worsening abdominal pain Significant or persistent bleeding Repeated vomiting Severe dehydration Fainting or significant dizziness A very high or persistent fever A swollen or unusually distended abdomen Severe weakness or unusual drowsiness Inability to keep fluids down Rapid deterioration If you are seriously concerned about your child’s condition, seek urgent medical care rather than waiting for the next appointment. 🧪 Your child’s doctor may order tests If a flare is suspected, your child’s healthcare team may recommend tests to work out what is happening. These may include: Blood tests Blood tests can look for signs of inflammation, anaemia, dehydration and other changes. Stool tests A stool sample may be used to check for infection and measure faecal calprotectin, which can provide information about intestinal inflammation. Other investigations Depending on your child’s symptoms and medical history, the team may recommend additional tests, imaging or an appointment. Not every suspected flare requires every test. 📊 How will we know if it really is a flare? Your child’s healthcare team may look at several pieces of information. This can include: Symptoms What has changed? Blood tests Are there signs of inflammation or anaemia? Stool tests What does the faecal calprotectin show? Is there evidence of infection? Growth and weight Has your child been gaining weight and growing as expected? Examination What does your child’s physical examination show? Previous results How does this compare with your child’s previous symptoms and test results? There isn’t always one test that gives a simple yes-or-no answer. 📝 Make a simple flare plan with your child’s team If your child has had IBD for a while, ask their gastroenterologist: “Can we make a plan for what to do if we think my child is having a flare?” Write down: ☐ What symptoms should make us call? ☐ Who should we contact? ☐ What number should we use during clinic hours? ☐ Who do we contact outside clinic hours? ☐ What tests might be needed? ☐ What should we do about medication? ☐ When should we go to hospital? Having these answers written down can make a stressful situation much easier to manage. 💛 What if you’re not sure? You don’t have to be certain that your child is having a flare before contacting their IBD team. If something has changed and you’re worried, it’s okay to ask. You might simply say: “My child has IBD and this isn’t their usual pattern. Could you tell me what we should do?” That’s enough. Your child’s healthcare team would rather know about a change in symptoms than have you sit at home worrying about whether you’re overreacting. ❤️ Remember: you know your child’s normal You will gradually become familiar with your child’s own IBD pattern. You’ll learn what their normal bowel habits look like, how much energy they usually have and what symptoms tend to happen when they’re unwell. But you don’t have to become an expert at diagnosing flares. Your role is to notice changes, keep your child’s healthcare team informed and follow the plan you’ve been given . If your child has IBD and you think something isn’t right, don’t wait until you have all the answers. Notice the change. Write it down. Contact the team. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Tests & Procedures What is faecal calprotectin? Learn what faecal calprotectin is, how the stool test works, what your child’s results mean, and how it helps doctors monitor inflammation in the gut. A simple guide to one of the most common stool tests used to monitor inflammation in children with IBD. If your child has IBD, you may have heard their healthcare team talk about faecal calprotectin , sometimes shortened to calprotectin or FC . The name sounds complicated, but the idea behind the test is quite simple. Faecal calprotectin is a protein that can be measured in poo. When there is inflammation in the bowel, the amount of calprotectin can increase. This makes it a useful tool for helping your child's IBD team understand what is happening inside the bowel. Why is my child's doctor checking it? One of the tricky things about IBD is that symptoms don't always tell the whole story . Your child might feel well while there is still some inflammation present. Equally, tummy pain or diarrhoea doesn't always mean that IBD inflammation is the cause. Faecal calprotectin gives the healthcare team another piece of information. It can help them: Look for evidence of inflammation in the bowel Assess how active IBD may be Monitor how well treatment is working Look for changes over time Help decide whether further investigation may be needed Monitor children who have previously had active disease It is usually considered alongside your child's symptoms, examination, blood tests and other investigations rather than being used on its own. What exactly is calprotectin? Calprotectin is a protein found inside certain types of white blood cells. When inflammation occurs in the bowel, these cells can move into the intestinal lining and release calprotectin. Some of that calprotectin passes into the stool. A laboratory can measure the amount of calprotectin in a stool sample. More calprotectin can suggest more inflammation — but it doesn't tell you exactly what is causing the inflammation. How does my child collect the sample? The test requires a small sample of poo . Your child's healthcare team or pathology laboratory will provide instructions and a collection container. Usually, the important thing is to make sure the sample is collected as instructed and doesn't become contaminated with urine or toilet water. It can feel awkward at first, particularly for an older child or teenager, but it's a very routine test for children with IBD. If your child is embarrassed about collecting the sample, help them and reassure them that this is a normal part of monitoring their condition . What does the result mean? Your child's result will usually be reported as a number, often in micrograms per gram (µg/g) . Generally, a higher result suggests more intestinal inflammation . But there isn't one number that can tell you: “Your child is definitely having a flare.” Different laboratories and clinical situations can use different reference ranges, and the result needs to be interpreted in context. Your child's IBD team will consider the result alongside their symptoms, previous results and other tests. A low result A low faecal calprotectin result generally suggests that there isn't a significant amount of intestinal inflammation at the time the sample was collected. This can be reassuring, but it doesn't mean that every possible cause of symptoms has been ruled out. A higher result A raised result suggests that there may be inflammation somewhere in the gastrointestinal tract. For a child with known IBD, this may indicate that the disease is active. However, a raised result does not automatically mean an IBD flare . There are other reasons calprotectin can be elevated, including gastrointestinal infections and other inflammatory conditions. That's why your child's healthcare team may repeat the test or arrange other investigations. Why might my child's result change? Calprotectin can change over time. If your child's IBD becomes more active, the level may increase. If treatment reduces inflammation, the level may decrease. This means your child's doctor may compare their results over time rather than looking at one result in isolation. For example: Previous result → current result → symptoms → blood tests → treatment Together, these pieces of information help create a much clearer picture of how your child's IBD is behaving. What if my child feels well but their calprotectin is high? This can happen. A child can have ongoing bowel inflammation without having many noticeable symptoms . This is one reason faecal calprotectin can be so useful in IBD monitoring. If your child's result is higher than expected, their IBD team may want to repeat the test, check other markers of inflammation, review their treatment or investigate further. Don't make changes to your child's medication based on the calprotectin result alone. What if my child feels terrible but their calprotectin is normal? This can happen too. A normal or low calprotectin result makes significant intestinal inflammation less likely, but it doesn't mean your child's symptoms aren't real. Tummy pain, diarrhoea, constipation, fatigue and other symptoms can have causes other than active IBD. Your child's healthcare team can help work out what might be happening. Can infections affect calprotectin? Yes. Faecal calprotectin is a marker of inflammation , not a test specifically for IBD. A gastrointestinal infection can cause inflammation and increase the calprotectin level. This is one reason your child's doctor may sometimes arrange stool tests for infections as well. If your child has recently had a stomach bug, tell their healthcare team, as it may be relevant when interpreting the result. How often will my child need the test? There isn't one schedule that applies to every child. Your child's IBD team may request calprotectin: Around the time of diagnosis When symptoms change During or after a suspected flare After starting or changing treatment As part of routine monitoring When they want to check whether inflammation has settled The frequency will depend on your child's individual situation. Is calprotectin the same as a colonoscopy? No. A colonoscopy allows doctors to directly look at the bowel lining and, when needed, take small tissue samples for testing. Faecal calprotectin is a non-invasive stool test that provides information about inflammation. The two tests answer different questions. Because calprotectin is much easier and less invasive, it can be particularly useful for monitoring children over time and deciding whether further investigation may be necessary. What should I do if my child's result is high? Don't panic. A high result is information, not a diagnosis of a flare by itself . Your child's IBD team will interpret the result alongside everything else they know about your child. They may recommend: Repeating the stool test Blood tests Testing for infection Reviewing symptoms Reviewing medication An appointment with the IBD team Further investigations if needed Don't stop, start or change your child's medication unless their healthcare team tells you to. Calprotectin is one piece of the puzzle. Your child's symptoms, growth, examination, blood tests, stool tests and treatment history all matter too. If you're looking at your child's result and wondering “Is this high?” , the best person to interpret it is your child's IBD team, who know your child's diagnosis and usual results. And if you're finding the stool collection part difficult or embarrassing, you're definitely not the only family who has been there. It may not be glamorous — but it can be a very useful tool for keeping track of your child's IBD. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Gut Health & Wellbeing Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. When your child has Crohn’s disease or ulcerative colitis, it is natural to look for ways to help manage their symptoms and support their gut health. Alongside prescribed medication, you may come across products such as Evinature, which are marketed as natural approaches to inflammatory bowel disease (IBD). But what is Evinature , how does it work, and is it suitable for children and teenagers with IBD? Understanding the available evidence, potential risks and limitations can help you make informed decisions about your child’s care. 🌿 What is Evinature? Evinature is a company that develops herbal supplement formulations for digestive health. Its best-known IBD-related product is the CurQD® protocol, which combines two plant-derived ingredients: curcumin and Qing Dai. Curcumin is a compound found in turmeric that has been studied for its anti-inflammatory properties. Qing Dai, also known as indigo naturalis, is a traditional herbal preparation that has been investigated for its potential effects on intestinal inflammation. Evinature developed CurQD to explore whether combining these ingredients could help people with ulcerative colitis. The product is intended to be used as a complementary approach to care rather than as a replacement for conventional medical treatment. 🔬 What does the research say about Evinature? There is some published research into CurQD, including studies involving children and teenagers with ulcerative colitis. However, the amount and quality of evidence need to be considered carefully. A 2024 study published in Frontiers in Pediatrics examined CurQD use in 30 children with mild to moderate ulcerative colitis or IBD-unclassified. The researchers reported improvements in clinical disease activity and, among the smaller group with available stool test results, improvements in faecal calprotectin, a marker of intestinal inflammation. These findings are encouraging, but there are important limitations: The study was retrospective, meaning researchers looked back at existing medical records rather than randomly assigning children to receive CurQD or a placebo. Only 30 children were included. Some children were also receiving conventional IBD treatments, so the study cannot establish that CurQD alone caused the improvements. The findings relate to ulcerative colitis and IBD-unclassified, not all forms of IBD. Larger, well-designed clinical trials are needed to establish how effective and safe the treatment is for children over the longer term. The study suggests that CurQD may have a role worth investigating, but it does not establish that the product is suitable for every child with IBD or that it can replace established treatments. 👧 Is Evinature suitable for children and teenagers? Evinature states that its CurQD protocol is suitable for children aged eight and older. However, a manufacturer's recommended age does not automatically mean that a product is appropriate for every child or that its safety has been established to the same standard as prescribed medicines. Children with IBD have particular needs because ongoing inflammation can affect their growth, puberty, nutrition and bone health. Treatment decisions should take these factors into account, even when a child appears to feel well. Before considering Evinature for your child, speak to their paediatric gastroenterologist or IBD nurse. They can help assess whether the available evidence applies to your child's diagnosis, disease activity, other medications and medical history. ⚠️ What are the potential risks and side effects? Natural ingredients are not necessarily harmless. Herbal supplements can cause side effects, interact with medicines and affect how certain health conditions are managed. CurQD contains Qing Dai, which has been associated in some reports with serious adverse effects, including pulmonary arterial hypertension (a condition involving high blood pressure in the blood vessels of the lungs) and liver problems. Evinature reports that these risks have been investigated in relation to its formulation, but the absence of reported cases in a particular product does not establish that the risk is zero. Evinature's product information also identifies possible side effects and recommends medical supervision and blood tests to monitor liver enzymes after starting treatment. If your child's specialist agrees to consider CurQD, ask about: Whether it is appropriate given your child's medical history and current medicines. What side effects to watch for and what to do if they occur. Whether liver function tests or other monitoring are needed. How your child's response will be assessed objectively. When the treatment should be stopped or reviewed. Seek urgent medical advice if your child develops concerning new symptoms, particularly breathing difficulties, chest pain, yellowing of the skin or eyes, or severe or unusual abdominal pain. 💊 Can Evinature be taken alongside prescribed IBD medication? Some research has investigated CurQD as an additional treatment alongside conventional IBD medication. However, this does not mean it is suitable for every combination of medicines or every child. Do not stop, reduce or delay your child's prescribed medication to try Evinature. Treatments such as biologics, immunomodulators and other prescribed medicines are used to control inflammation and reduce the risk of complications. If you are considering a supplement, tell your child's IBD team exactly which product you are looking at. Give them the ingredient list and proposed dose so they can assess potential interactions and monitoring requirements. 🩺 How would you know if it is helping? One of the challenges with IBD is that symptoms do not always reflect how much inflammation is present in the bowel. A child may feel better while inflammation remains active, or continue to experience symptoms for reasons other than active inflammation. If your child starts taking Evinature, its effects should be assessed using more than symptoms alone. Depending on your child's situation, this may include: Bowel symptoms, including pain, diarrhoea and urgency. Stool tests, particularly faecal calprotectin. Blood tests to assess inflammation, anaemia and nutritional status. Growth, weight and general wellbeing. Further investigations when clinically indicated. Your child's IBD team can determine what monitoring is appropriate and whether the treatment is making a meaningful difference. 💰 How much does Evinature cost? The cost of Evinature can be an important consideration for families, particularly if your child needs to take it over an extended period. As a supplement, it may represent an additional expense alongside prescribed IBD medication, appointments and monitoring tests. Prices can vary depending on the product, dosage, length of treatment and shipping costs. Before starting, check the current prices directly with Evinature and ask how much your child's recommended daily dose would cost over a month or several months. It is also worth considering whether the cost is manageable for your family in the long term. Speak to your child's IBD team about the potential benefits, the strength of the evidence and any additional monitoring costs before making a decision. Remember: Evinature should not replace prescribed IBD medication, and spending more on a supplement does not guarantee better results. 💚 The bottom line for parents Evinature's CurQD protocol is an area of interest in IBD research, and early studies involving children with ulcerative colitis have reported promising results. However, the evidence remains limited, and more research is needed to establish its effectiveness and long-term safety in children. If you are considering it for your child, the safest approach is to discuss it with their paediatric gastroenterologist before starting. A treatment being herbal or marketed as evidence-based does not automatically make it suitable for every child. Your child's growth, development and long-term bowel health remain the priorities. Any complementary treatment should support a carefully monitored IBD care plan, not replace it. 📚 Further reading Read the 2024 study of CurQD in children with ulcerative colitis . Visit the Evinature website for product information and details of its research. This article is for general information and educational purposes only. It is not intended to replace professional medical advice, diagnosis or treatment. Evinature and its products have not been established as safe or effective for every child with IBD. Always consult your child's paediatric gastroenterologist before starting any supplement, and never stop or change prescribed medication without medical advice. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More What should I tell my child’s school? What to share about Crohn’s disease or ulcerative colitis, including toilet access, fatigue, flares, medication, absences, exams, PE and emotional wellbeing. Read More

Growth & Puberty Why is my child not growing as expected? How Crohn’s disease and ulcerative colitis can affect height, weight, nutrition and puberty, what changes to look for, and when to speak with your child’s IBD team. Is your child shorter or smaller than their friends, or have you noticed that their growth seems to have slowed down? For parents of children with IBD, concerns about height and weight are common. Crohn’s disease and ulcerative colitis can sometimes affect growth, particularly when inflammation is active or a child is struggling to get enough nutrition. But being smaller than other children does not automatically mean something is wrong. Children grow at different rates, and genetics, puberty, nutrition and many other factors can influence height and weight. What matters most is often your child’s individual growth pattern over time . 📏 What does “not growing as expected” mean? Growth isn’t simply about being tall or short. Your child’s healthcare team may look at: height weight growth velocity — how quickly they are growing BMI, when appropriate their previous growth pattern their parents’ heights and family growth patterns puberty and development nutrition IBD activity. A child who has always been smaller than their classmates but follows their usual growth curve may not have a growth problem. On the other hand, a child who was growing steadily but suddenly starts growing more slowly may need further assessment. The change in growth pattern can be more important than the actual number on the growth chart. 🩺 How can IBD affect growth? Active IBD can affect growth in several ways. Ongoing inflammation Inflammation from active Crohn’s disease or ulcerative colitis can affect the body’s normal growth processes. Not eating enough Children may eat less because of: abdominal pain nausea diarrhoea feeling full quickly poor appetite fear of eating because food has previously caused symptoms. Increased nutritional needs When inflammation is active, the body may need additional energy and nutrients. Nutrient deficiencies Some children with IBD can develop deficiencies in nutrients needed for healthy growth, including iron, vitamin D, calcium, vitamin B12, folate and zinc. Problems absorbing nutrients Some children, particularly those with certain types of Crohn’s disease, may have difficulty absorbing nutrients properly. Delayed puberty If growth and nutrition have been affected, puberty can sometimes occur later. This can also make a child appear smaller than their peers for a period of time. 🍎 Could it simply be that my child isn’t eating enough? Sometimes. Children with IBD may struggle to meet their nutritional needs, especially during a flare. They might: skip meals eat very small portions avoid foods they associate with pain have a poor appetite become full quickly avoid eating at school because of toilet worries. However, poor growth shouldn’t automatically be blamed on picky eating or not eating enough. If your child’s growth has slowed, their healthcare team may want to understand why before simply recommending that they eat more. 🔥 Could an IBD flare affect growth? Yes. A prolonged or poorly controlled IBD flare can affect appetite, nutrition and the body’s ability to grow normally. Symptoms such as diarrhoea, abdominal pain, bleeding and fatigue can make eating difficult and increase nutritional demands. If your child has a change in bowel habits, weight loss or other symptoms alongside slowing growth, tell their IBD team. Sometimes growth changes can be an important clue that inflammation isn’t fully controlled — even when other symptoms seem relatively mild. ⚖️ What if my child’s weight is okay but their height isn’t increasing? This is an important distinction. A child can maintain their weight while their height growth slows. That’s why IBD teams generally monitor both height and weight over time . Your child’s doctor may look at their growth velocity and compare it with their previous measurements rather than focusing on one appointment’s height or weight. 🌱 What about puberty? Puberty naturally causes major changes in height, weight and body composition. Some children with IBD may experience delayed puberty, particularly when they have had significant or prolonged inflammation or nutritional difficulties. If your child seems to be developing later than their peers, don’t assume that IBD is definitely responsible. Family genetics and normal differences in puberty timing are also important. Your child’s doctor can assess whether their development is within the expected range. 🧪 What tests might be needed? If your child’s growth is slower than expected, their healthcare team may review several things. Depending on your child’s situation, this could include: growth measurements and growth charts weight and nutritional intake blood tests iron and ferritin vitamin D and other nutritional markers inflammatory markers such as CRP and ESR faecal calprotectin assessment of IBD symptoms and disease activity puberty and hormone assessment other investigations if needed. Not every child will need all of these tests. The aim is to work out whether the growth pattern is related to IBD, nutrition, puberty, genetics or another cause. 🥗 How can nutrition support healthy growth? Children need enough energy, protein, vitamins and minerals to support normal growth. If your child isn’t gaining weight or growing as expected, an IBD dietitian can be particularly helpful. They may recommend: increasing energy and protein in meals smaller, more frequent meals nutrient-rich snacks nutritional supplements when appropriate strategies for eating during a flare checking for nutritional deficiencies working around food intolerances or symptoms. It’s important not to put your child on a restrictive diet without professional advice. Removing large numbers of foods can make it even harder for a growing child to get enough nutrients. 💊 Can IBD treatment help growth? If active inflammation is contributing to poor growth, controlling the underlying IBD is an important part of helping your child grow. Your child’s gastroenterologist may review their treatment if inflammation is still active. The goal isn’t simply to make your child gain weight or grow taller — it’s to control the underlying disease while supporting healthy nutrition and development. Never change or stop your child’s IBD medication without speaking with their healthcare team. ❤️ How can I support my child? Growth can become a sensitive topic, particularly as children get older. Try to focus on health, strength and development rather than body size . You can help by: offering regular meals and snacks keeping food as positive and relaxed as possible avoiding comments about your child’s body or weight supporting their prescribed IBD treatment attending regular appointments keeping track of changes in appetite or symptoms asking for dietitian support when needed giving your child opportunities to talk about how they feel about their growth. If your child is worried about being smaller than their friends, reassure them that children grow at different rates and that their healthcare team is keeping an eye on their development. 📞 When should I talk to the IBD team? Contact your child’s IBD team if you notice: their height growth has slowed or stopped unexplained weight loss difficulty gaining weight a significant change in appetite persistent diarrhoea ongoing abdominal pain frequent vomiting blood in the stool significant fatigue difficulty eating signs of delayed puberty concerns about your child’s relationship with food or body image. You don’t need to wait until the next routine appointment if you’re concerned about a noticeable change. 💛 Remember: every child has their own growth pattern Being smaller than other children doesn’t automatically mean your child isn’t healthy. What matters is how your child is growing over time and whether their growth, nutrition, puberty and IBD activity are progressing as expected. If your child’s growth has slowed, it is worth raising it with their IBD team. They can look at the bigger picture and work out whether your child needs further assessment or additional nutritional or medical support. You don’t have to work out your child’s growth on your own. Your IBD team and paediatric IBD dietitian can help you understand what your child’s growth pattern means and what, if anything, needs to be done. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Flares When should I call the IBD team? Not sure when to call your child’s IBD team? Learn which symptoms and changes to watch for, when to seek advice, and when urgent medical care may be needed. One of the hardest parts of having a child with IBD can be knowing when to call the healthcare team . Is this just a bad day? A stomach bug? A food that didn’t agree with them? Or could their IBD be becoming active again? You don’t need to be able to answer those questions yourself. Your child’s IBD team is there to help you work out what is happening and what to do next. As you get to know your child’s Crohn’s disease or ulcerative colitis, you’ll also become more familiar with what is normal for them. A change from their usual pattern is often worth paying attention to. 📞 Call the IBD team if you notice a change You should contact your child’s IBD team if they develop new or worsening symptoms that could be related to their IBD. This might include: More frequent or looser poos than usual Diarrhoea that continues or is getting worse Blood in their poo New or increasing mucus Increased urgency or accidents New or worsening tummy pain Your child waking at night to use the toilet A noticeable drop in appetite Ongoing nausea or vomiting Increased fatigue or a significant drop in energy Unexplained weight loss Poor weight gain or concerns about growth Fever or feeling generally unwell New joint pain or swelling New mouth ulcers, skin changes or eye symptoms Your child simply seeming different from their usual self One symptom doesn’t necessarily mean your child is having an IBD flare. However, a persistent or noticeable change is worth discussing with their healthcare team. 🚽 Changes in bowel habits For many children with IBD, changes in their poo can be one of the first signs that something is changing. Pay attention to changes in: How often they poo How loose or formed their stools are Whether they are rushing to the toilet Whether they are waking overnight to poo Blood or mucus Accidents Feeling like they still need to go after using the toilet Try to think about what is normal for your child , rather than comparing them with someone else. For example, if your child normally has one or two bowel movements a day and suddenly starts having six, that change is important even if you don’t know whether it is a flare. 🩸 What if there is blood? Blood in your child’s poo should be discussed with their healthcare team, particularly if they have known IBD. Your team may want to know: How much blood there is Whether it is happening every time they poo Whether the blood is mixed through the stool or appears on the toilet paper Whether there is mucus Whether your child has diarrhoea or urgency Whether they have tummy pain Whether they have a fever or feel unwell If there is heavy bleeding, severe pain, fainting, significant weakness or your child appears seriously unwell , seek urgent medical attention rather than waiting for a routine response from the IBD team. 🤕 What about tummy pain? Children with IBD can experience abdominal pain for many different reasons. Call the IBD team if your child’s tummy pain is: New Becoming more frequent More severe than usual Affecting eating or drinking Waking them at night Preventing normal activities Happening alongside diarrhoea, blood, vomiting or fever Severe or rapidly worsening abdominal pain needs urgent medical assessment. 😴 Don’t overlook fatigue Fatigue can be easy to dismiss, especially in children who are busy with school and activities. But if your child suddenly seems much more tired than usual, struggles to get through the school day, stops wanting to participate in activities or needs significantly more sleep, let their healthcare team know. Fatigue can have many causes, including active inflammation, anaemia, poor sleep, infection and nutritional problems. Your IBD team can help work out what needs checking. 🍽️ If they’re eating less A temporary change in appetite isn’t necessarily a reason to panic. But contact the IBD team if your child is consistently: Eating much less than usual Avoiding meals because of pain Feeling sick when they eat Losing weight Struggling to maintain their usual growth Drinking less because they feel unwell Children with IBD have additional nutritional and growth needs, so ongoing changes in eating deserve attention. 🌡️ What if my child has a fever? A fever doesn’t automatically mean an IBD flare. Children can develop fevers from common infections, and infections can sometimes cause symptoms that look similar to a flare. Tell your IBD team if your child has a fever alongside new or worsening gastrointestinal symptoms, particularly if they are taking medicines that affect the immune system. If your child has a high or persistent fever or looks significantly unwell, seek medical advice promptly. 💊 What if my child misses their medication? If your child vomits after taking medication, misses a dose, cannot keep their medication down or you are unsure what to do with their medication during an illness, contact their healthcare team or pharmacist for advice. Don’t double a dose or stop IBD medication unless you have been advised to do so. Some medicines have specific instructions about missed doses or infections, so it’s important to check rather than guess. 🧪 What if their symptoms are mild? You don’t necessarily need to wait until symptoms become severe before contacting the team. If you’re noticing a pattern or a change that is continuing , it’s reasonable to ask for advice. Your IBD team may recommend monitoring symptoms, arranging blood or stool tests, such as faecal calprotectin, or bringing your child in for assessment. Sometimes the most useful thing you can tell the team is simply: “This isn’t normal for my child.” You know your child’s usual behaviour and routines better than anyone. 🚨 When should I seek urgent medical care? Some situations need more immediate attention than a routine call to the IBD team. Seek urgent medical care if your child: Has severe or rapidly worsening abdominal pain Has significant or heavy rectal bleeding Is repeatedly vomiting or unable to keep fluids down Has signs of significant dehydration Is fainting, extremely weak or difficult to wake Has a severe or persistent fever and appears very unwell Has a swollen or very tender abdomen Has difficulty breathing Has a significant change in their level of alertness Or you are seriously concerned about their condition If you believe your child is seriously unwell or it is an emergency, seek emergency medical care rather than waiting for the IBD team to respond. 📱 What should I tell the IBD team? When you call or send a message, having a few details ready can make the conversation easier. You could write down: Symptoms What has changed? When did it start? Is it getting better, worse or staying the same? Bowels How many times have they pooed? What are the stools like? Is there blood or mucus? Is there urgency? Other symptoms Tummy pain Fever Vomiting Appetite Energy levels Weight changes Joint or other symptoms Medication What medications are they taking? Have they missed any doses? Have they vomited after taking medication? Have there been any recent medication changes? You don’t need to have all the answers. Give the team the information you have and let them guide you. 📝 Keep a simple symptom record If your child has recurring symptoms, a simple IBD symptom tracker can be incredibly useful. You might record: Bowel movements Number and consistency Blood None, small amount or more noticeable Mucus Whether it is present Urgency How difficult it is to wait and whether it is waking them during the night Tummy pain When it happens and how severe Appetite Normal or reduced Energy Usual or noticeably lower Temperature Any fever Weight Changes over time Medication Doses taken or missed You don’t need to track every detail forever. The goal is to help you and your child’s healthcare team spot patterns and changes. What if you’re not sure? This is one of the most important things to remember: You don’t need to know whether it’s a flare before you call. That’s what the IBD team is there for. You might be worried that you’re calling about something minor. That’s okay. It’s better to ask when you’re unsure than to feel like you have to work it out alone. Over time, you’ll become more familiar with your child’s symptoms, their usual bowel pattern and their early warning signs. Make a plan before you need it If you haven’t already, ask your child’s IBD team for a clear plan that explains: Which symptoms should prompt a call Who to contact during clinic hours Who to contact after hours What tests might be needed What to do if your child becomes unwell What to do if medication is missed When your child should be seen urgently Where to go for emergency care Keep this information somewhere easy to find. It can also help to share the plan with other people who care for your child, such as grandparents, babysitters or school staff where appropriate. ❤️ Trust the change you notice You don’t need to become an expert in IBD to care for your child. You just need to notice when something is different. A change in bowel habits, blood, tummy pain, fatigue, appetite, weight or your child’s overall wellbeing can all be reasons to check in with their healthcare team. And if you’re thinking, “I’m not sure if this is important enough to call about,” that’s a perfectly reasonable reason to ask. You know your child. Your IBD team is there to help you work out what comes next. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Medication Understanding your child’s IBD medications Understand your child’s IBD medications, including treatments for Crohn’s disease and ulcerative colitis, steroids, biologics, biosimilars, side effects and monitoring. When your child is diagnosed with IBD, one of the biggest adjustments can be learning about their medications. You may suddenly hear words like: Aminosalicylates. Steroids. Immunomodulators. Biologics. Biosimilars. Induction. Maintenance. It can feel like learning a completely new language. And then there are the practical questions: What does this medication actually do? How long will my child need it? What are the side effects? Why are there so many different treatments? What happens if it doesn’t work? Understanding the basics can make IBD treatment feel much less overwhelming. Your child’s gastroenterologist and IBD team will choose treatment based on your child’s individual circumstances, including whether they have Crohn’s disease or ulcerative colitis, how active the inflammation is, where the inflammation is located, their age, growth, other health factors and how they respond to treatment. 🌍 Medication availability varies between countries One important thing to know is that IBD medications are not necessarily available, approved or prescribed in the same way in every country . Medication names, formulations, approved ages, treatment guidelines, prescribing rules, funding and access can all vary depending on where you live. This guide focuses on the general types of IBD medications used in children. Your child’s local IBD team will recommend treatments that are appropriate for their age, condition and healthcare system. 💊 Why does my child need IBD medication? IBD causes ongoing inflammation in the digestive tract. Treatment aims to control that inflammation and help your child feel well. Depending on the medication, treatment may be used to: Bring an active flare under control Reduce inflammation Help symptoms improve Achieve remission Maintain remission Prevent future flares Support healthy growth and development Heal inflammation in the bowel An important thing to understand is that feeling better doesn’t always mean the inflammation has completely gone . Your child’s IBD team may use symptoms, blood tests, stool tests such as faecal calprotectin, imaging or endoscopy to assess how well treatment is working. 🔥 Induction treatment: calming a flare When your child’s IBD is active, their doctor may prescribe treatment designed to bring the inflammation under control. This is sometimes called induction treatment . The aim is to get the disease into remission. The medication used for induction depends on the type and severity of IBD and your child’s individual circumstances. Treatment options can also vary between countries. Some children may need a short course of steroids. Others may start or change to another treatment designed to control inflammation more effectively. 🌿 Maintenance treatment: staying well Once your child’s IBD is under control, they may continue treatment to help maintain remission. This is called maintenance treatment . Maintenance medication is important because IBD can become active again even when a child feels completely well. That’s why your child may continue taking medication when they don’t have obvious symptoms. Feeling well is the goal — but continuing the prescribed treatment can be part of staying well. What are the main types of IBD medications? There are several different groups of medicines used to treat Crohn’s disease and ulcerative colitis. Not every child will use every type, and the medicines available can differ between countries. Aminosalicylates Aminosalicylates, sometimes called 5-ASAs , are anti-inflammatory medicines. One commonly used medicine is mesalazine . They are particularly important in the treatment of ulcerative colitis, although their use depends on the individual situation. They can be available in different forms, including tablets, capsules, granules, liquid or medicines delivered directly into the bowel. The exact products and formulations available depend on where you live. Corticosteroids Steroids are powerful anti-inflammatory medicines. They can work quickly and may be used to help bring an active IBD flare under control. Examples include: Prednisolone Budesonide Steroids are generally used for limited periods rather than as a long-term maintenance treatment because prolonged steroid use can cause significant side effects. Your child’s doctor will give you specific instructions about the dose and how the medication should be reduced or stopped. Never stop steroid medication suddenly unless your child’s healthcare team tells you to. Immunomodulators Immunomodulators are medicines that alter the activity of the immune system. Examples include: Azathioprine Mercaptopurine Methotrexate They may be used in some children with IBD, depending on their individual circumstances and local treatment guidelines. These medications can require regular blood monitoring. Your child’s IBD team will explain what monitoring is needed and what symptoms you should report. Biologics Biologic medicines are treatments made using biological substances and are designed to target specific parts of the immune system involved in inflammation. Several biologic medicines are used to treat paediatric IBD. Depending on the medication, they may target specific inflammatory pathways involved in IBD. Biologics can be given by: Injection under the skin Intravenous infusion The specific medicines available, approved ages and treatment schedules can vary between countries. Biosimilars You may also hear the term biosimilar . A biosimilar is a biological medicine that is highly similar to an existing biological medicine and has no clinically meaningful differences from the reference medicine in terms of quality, safety and effectiveness for its approved uses. Biosimilars are used in many healthcare systems, but availability and prescribing practices vary between countries . If your child is offered a biosimilar, ask their IBD team why it has been recommended and whether there is anything you need to know about changing between treatments. Why are there so many different medications? There isn’t one medication that works for every child with IBD. Crohn’s disease and ulcerative colitis can affect children differently. Your child’s treatment may depend on: Their type of IBD Where inflammation is located How severe the inflammation is Their symptoms Growth and nutrition Previous treatments Other health conditions How they respond to medication Side effects Blood and stool test results Their age What treatments are approved and available where they live Your child’s treatment plan may also change over time. That doesn’t necessarily mean something has gone wrong. Sometimes the IBD team changes treatment because they want to achieve better control of inflammation, maintain remission or reduce medication-related problems. What does “response” mean? You may hear your child’s doctor talk about whether they are responding to treatment . This generally means the treatment is having the desired effect. You might notice: Fewer bowel movements Less diarrhoea Less blood Less abdominal pain Better appetite More energy Improved weight or growth Your child’s healthcare team may also look for improvement in objective measures of inflammation, such as blood or stool tests. What does remission mean? Remission generally means the IBD is under control. But remission can be assessed in different ways. Your child’s symptoms may improve significantly while tests still show inflammation. That’s why your IBD team may monitor more than just how your child feels. You may hear terms such as: Clinical remission Biochemical remission Endoscopic remission Your child’s gastroenterologist can explain what these terms mean in relation to their treatment goals. What are side effects? Every medication can have potential side effects. The important thing is to understand the difference between: A common or expected side effect and A symptom that needs medical attention. Your child’s IBD team should explain the important side effects associated with their medication and what you should do if they occur. Medication information can differ between countries, so use the information provided by your child’s healthcare team and the official information supplied with their medication. Don’t stop an IBD medication because you’re worried about a possible side effect without speaking to the healthcare team first, unless you have been given specific instructions to do so. 🧪 Why does my child need blood tests? Some IBD medications require regular blood monitoring. Blood tests may be used to check: Blood cell counts Liver function Kidney function Inflammation Medication-related effects Nutritional markers The exact tests and frequency depend on the medication your child is taking and their individual circumstances. If your child has regular blood tests, ask their IBD team what they are monitoring and when you should expect the results. 🦠 What about infections? Some IBD medications affect the immune system. This can change how your child’s body responds to infections. Before starting certain treatments, your child’s healthcare team may check vaccination history, screen for particular infections and perform other tests depending on the medication and local clinical guidelines. If your child develops a significant infection or becomes unexpectedly unwell, contact their healthcare team for advice. The advice can differ depending on the medication your child is taking, so don’t assume that every treatment should be handled in exactly the same way. 💉 What about vaccines? Vaccination advice can depend on your child’s medication and whether it affects the immune system. Some vaccines can be given routinely, while certain live vaccines may require special consideration for children taking particular immunosuppressive treatments. Vaccination schedules and recommendations also vary between countries. Always tell your child’s healthcare team which medications they are taking before receiving a vaccine, and ask what vaccination schedule is appropriate for them where you live. 🏫 What should I tell the school? Your child’s school doesn’t necessarily need to know every detail about their medical treatment. However, it can be helpful for relevant staff to know: That your child has IBD Who to contact if they become unwell Whether they need medication during school hours Whether they have special toilet access What to do if they develop symptoms Any relevant emergency plan The specific school support available will depend on where you live. Your child should also have a say in what information is shared with other people, particularly as they become older. 🧳 What about holidays and travel? If your child takes regular IBD medication, planning ahead can make travelling easier. Before travelling, ask your healthcare team about: Medication supplies Storage requirements Injection or infusion schedules What to do if medication is lost Travel documentation Carrying medication through airports Vaccinations What to do if your child becomes unwell while away Travel and medication rules can vary between countries. Check the requirements for both your home country and your destination well before travelling. Make sure you have enough medication for the trip and any unexpected delays, according to your healthcare team’s advice. ❓ What if my child refuses their medication? Medication can be difficult for children, especially if they have to take tablets, injections or regular treatments for a condition they can’t always see or feel. Try to understand why they are refusing it. Is it: The taste? Difficulty swallowing? Fear of needles? Side effects? Embarrassment? Forgetting? Feeling angry about having IBD? Feeling like they don’t need medication because they feel well? The solution may be different depending on the reason. Talk to your child’s IBD team rather than turning medication into a daily battle. There may be alternative formulations, techniques or support available, depending on what is available where you live. 👧 Help your child understand their medication As children get older, they can gradually take more responsibility for their own IBD medications. Start with simple information: “This medicine helps keep the inflammation under control.” As they get older, you can teach them: The names of their medications What each medication does When they take it How they take it What side effects to watch for Who to contact if there is a problem How to order or collect prescriptions How to keep track of doses This gradual process can help prepare them for managing their IBD independently. 📋 Keep a medication list It can be helpful to keep an up-to-date list of your child’s medications. Include: Medication Dose How often Why they take it You could also record: Allergies Previous medication reactions Recent medication changes Other medicines or supplements Your child’s IBD team’s contact details Take the list to appointments and update it whenever something changes. 🌍 Where can I find information about medications in my country? Because IBD medication availability and healthcare systems differ around the world , your country’s IBD organisation, medicines regulator, pharmacist and healthcare team can provide information specific to where you live. On IBD Kids, country-specific medication pages can help explain: Medicines commonly used in that country Local medication names How prescriptions work Medication access and funding Where families can get further information Always check local guidance before making decisions about your child’s medication. Questions to ask your child’s IBD team You don’t need to remember everything from an appointment. Consider asking: What does this medication do? Is it for induction or maintenance? How long will my child need it? When should we expect it to start working? How will we know if it is working? What side effects should we watch for? Which symptoms should make us call you? Does my child need regular blood tests? Are there any vaccination considerations? What should we do if a dose is missed? What should we do if my child vomits after taking it? Can my child play sport normally? Are there medication considerations when travelling? What happens if this treatment doesn’t work? Are there alternative treatments available if this medication isn’t suitable? ❤️ You don’t need to understand everything at once Being given a list of IBD medications can feel overwhelming. You don’t need to memorise every drug name or understand every medical term immediately. Start with the basics: What is my child taking? What does it do? When do they take it? What should I watch for? Who do I contact if I have concerns? Your child’s IBD treatment may change as they grow and as their disease changes. The specific medications available to your child will also depend on where you live, their age, their condition and the treatments approved and available in your healthcare system . The goal is not simply to treat symptoms. It is to control inflammation, support healthy growth and development and help your child live as normally as possible. If you don’t understand why your child is taking a particular medication, ask. You are an important part of the IBD team. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Food & Nutrition Eating during an IBD flare Practical tips for managing food, fluids, appetite and nutrition during a Crohn’s disease or ulcerative colitis flare, including foods that may be easier to tolerate, hydration, weight and growth, and when to seek help from your IBD team or dietitian. When your child is having an IBD flare , food can suddenly become difficult. They may have diarrhoea, abdominal pain, nausea, urgency or a poor appetite. Foods they normally enjoy may seem harder to tolerate, and you may find yourself wondering: “What should I feed my child during an IBD flare?” There isn’t one diet that works for every child with Crohn’s disease or ulcerative colitis. During a flare, the goal is usually to help your child stay hydrated, maintain nutrition and eat foods they can comfortably tolerate while their IBD team treats the underlying inflammation. Food can affect symptoms, but avoiding a particular food does not necessarily mean that food is causing the flare. 🔥 Why eating can be difficult during a flare Active IBD can affect appetite, digestion and how your child feels after eating. Your child may experience: diarrhoea abdominal cramps or pain nausea bloating urgency fatigue reduced appetite feeling full quickly weight loss. They may also start avoiding foods because they are worried about needing the toilet or developing pain afterwards. This can make it difficult to get enough energy and nutrients — particularly when your child is growing. 💧 Fluids come first If your child has frequent diarrhoea or vomiting, keeping them hydrated is particularly important. Offer fluids regularly rather than waiting until your child is very thirsty. Depending on your child’s situation, their healthcare team may recommend: water oral rehydration solutions other suitable fluids. If your child is losing a lot of fluid, ask their IBD team what they recommend. Signs of dehydration Contact your child’s healthcare team promptly if you are concerned about dehydration. Signs can include: passing urine less often dark urine dry mouth dizziness unusual tiredness or weakness sunken eyes being unusually sleepy or difficult to wake. If your child cannot keep fluids down, is severely dehydrated or appears very unwell, seek urgent medical care. 🍽️ Small meals can be easier Your child may find three large meals difficult during a flare. Try offering smaller meals and snacks more frequently if that feels more manageable. For example: breakfast morning snack lunch afternoon snack dinner evening snack. Don’t worry if your child’s usual meal pattern changes temporarily. The priority is helping them get enough nutrition in a way they can tolerate. 🥔 Choose foods your child tolerates There is no universal “flare food list”. Some children find softer, lower-fibre foods easier to tolerate temporarily, particularly if they are experiencing diarrhoea or abdominal discomfort. Depending on your child’s individual tolerance, this might include: rice pasta bread or toast potatoes without skins oats eggs chicken or other tender meats fish smooth nut butter yoghurt or a suitable alternative cooked vegetables peeled or cooked fruit. These are examples — not rules . Your child may tolerate foods that another child with IBD cannot, and vice versa. 🥕 What about fruit and vegetables? Fruit and vegetables are an important part of a nutritious diet, but their texture and fibre content can sometimes be difficult to tolerate during a flare. Your child may find that: cooked vegetables are easier than raw peeled fruit is easier than fruit with skin soft fruit is easier than harder or fibrous fruit smaller portions are easier than large amounts. If your child is struggling with fibre during a flare, ask their IBD team or dietitian what changes would be appropriate. Avoiding all fruit and vegetables for a prolonged period without professional advice can make it harder to meet nutritional needs. 🧈 Don’t forget energy and protein Children need enough energy and protein to grow and develop. During an IBD flare, your child may be eating less than usual while their nutritional needs remain high. Try to include protein and energy-dense foods your child tolerates. These might include: eggs chicken fish meat tofu yoghurt cheese nut butter avocado olive oil suitable nutritional supplements recommended by your healthcare team. If your child is struggling to eat enough, ask for help early rather than waiting for significant weight loss. 🥛 What about dairy? You don’t automatically need to remove dairy because your child has IBD. Some children tolerate dairy without any problems. Others may have lactose intolerance or find dairy harder to tolerate during certain periods. If you think dairy is contributing to your child’s symptoms, speak with their healthcare team or dietitian before removing it completely. If dairy is removed, make sure your child still gets enough calcium, vitamin D, protein and energy from other foods or supplements if recommended. 🚫 Should I avoid certain foods? You may hear lots of advice about foods that supposedly “cause IBD flares”. Be cautious about making major dietary changes based on general advice from social media or the internet. There isn’t a universal list of foods that children with Crohn’s disease or ulcerative colitis need to avoid. A food can also make symptoms feel worse without actually causing the intestinal inflammation that is driving the flare. For example, a particular food might increase diarrhoea or abdominal discomfort while your child’s underlying IBD remains the same. If you notice a consistent food-and-symptom pattern, discuss it with your child’s IBD team or dietitian. 📝 Keep track of patterns A simple food and symptom diary can sometimes help you and your healthcare team understand what’s happening. You could record: What they ate What foods and drinks did they have? Bowel movements How often? Any blood or mucus? Symptoms Pain, nausea, bloating or urgency? Appetite Were they hungry, eating less or refusing food? Fluids How much were they drinking? Medication Were doses taken as prescribed? You don’t need to record every bite of food forever. The purpose is to identify useful patterns and give your healthcare team helpful information. ⚖️ Don’t let food restrictions take over When a child is unwell, it can be tempting to keep removing foods until you find something that seems “safe”. But long lists of food restrictions can make it difficult for a growing child to get enough nutrition. Restrictive eating can increase the risk of: inadequate calorie intake nutritional deficiencies weight loss poor growth anxiety around food missing out on social activities involving food. If your child is avoiding many foods, ask for help from an IBD-focused paediatric dietitian. 🥤 What if my child isn’t eating much? A temporary drop in appetite can happen during a flare. You can try: small portions frequent snacks favourite foods that your child tolerates energy-dense additions where appropriate drinks or smoothies if your child tolerates them eating together without pressure. Try not to turn every meal into a battle. If your child consistently can’t eat enough, is losing weight or is becoming increasingly weak or tired, contact their healthcare team. They may recommend nutritional support, such as an oral nutritional supplement or, in some children with Crohn’s disease, exclusive enteral nutrition (EEN) . EEN is a specific medical nutrition treatment and should only be undertaken under the guidance of the child’s IBD team and dietitian. 💩 What if eating makes diarrhoea worse? It can be frightening when your child eats and then quickly needs the toilet. Remember that this doesn’t necessarily mean the food has “gone straight through them”. Eating can naturally stimulate bowel activity, and an inflamed bowel can be particularly sensitive. If your child’s diarrhoea is worsening, especially if there is blood, significant pain, fever or dehydration, contact their IBD team. Don’t assume that changing their diet alone will treat an IBD flare. 🩺 Food doesn’t replace IBD treatment One of the most important things to remember is that food and IBD treatment are not the same thing . A child may eat a very nutritious diet and still have active intestinal inflammation. If your child is having an IBD flare, their healthcare team may need to assess their symptoms and arrange blood tests, faecal calprotectin or other investigations. Their treatment may also need to be adjusted. Don’t stop, reduce or change your child’s IBD medication because of food or dietary changes unless their healthcare team tells you to. 🚩 When should I contact the IBD team? Contact your child’s IBD team if they are: having significantly more diarrhoea than usual passing blood experiencing increasing abdominal pain refusing most food drinking very little losing weight unusually tired or weak vomiting repeatedly having symptoms that are getting worse rather than better. Your child’s team may want to determine whether their symptoms are due to active IBD, an infection, medication effects or another cause. 🚨 When is urgent medical care needed? Seek urgent medical attention if your child has symptoms such as: severe or rapidly worsening abdominal pain a swollen or very tender abdomen heavy or persistent rectal bleeding repeated vomiting with an inability to keep fluids down signs of significant dehydration fainting or severe weakness being difficult to wake or unusually confused a high or persistent fever with your child appearing very unwell. If you’re unsure whether your child’s symptoms are urgent, seek medical advice. ❤️ Keep food as normal as possible A flare can make life feel very medical very quickly. If you can, try to keep some normality around food. Let your child choose between foods they tolerate. Eat together when possible. Keep favourite foods available. Allow treats when appropriate. Your child doesn’t need to feel like every meal is another part of their treatment. Food should still be food — something that provides nourishment, comfort, connection and enjoyment. 🌱 When the flare improves As your child’s symptoms settle, you may be able to gradually return to a wider range of foods. You don’t necessarily need to stay on a restrictive “flare diet” once your child is feeling better. Your child’s IBD dietitian can help you work towards a varied diet that supports: growth energy nutrition healthy development school and activities family meals enjoyment of food. The takeaway When your child is having an IBD flare, focus on the basics: 💧 Keep them hydrated. 🍽️ Offer small, manageable meals and snacks. 🥚 Include energy and protein where tolerated. 🥕 Adapt texture and fibre if your child needs to. 🚫 Avoid unnecessary long-term food restrictions. 🩺 Stay connected with their IBD team. 📈 Keep an eye on weight, growth and overall nutrition. There is no perfect flare diet for every child. The right approach is the one that helps your child stay nourished and hydrated while their healthcare team manages the underlying IBD. This article is for general education and does not replace personalised medical or nutritional advice. Dietary needs can vary depending on your child’s Crohn’s disease or ulcerative colitis, symptoms, growth, nutritional status, complications and treatment. Speak with your child’s IBD team or a qualified paediatric dietitian before making significant dietary changes or starting a restrictive diet. This article is for general information and education. It is not a substitute for medical advice from your child’s doctor, paediatric gastroenterologist or IBD team. 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 Can dietary changes help induce IBD remission? Can dietary changes help induce IBD remission? Learn about nutritional therapies, anti-inflammatory diets and how food can support children with Crohn’s disease and ulcerative colitis. Read More Evinature for children with IBD: exploring natural support Explore Evinature as a natural approach to IBD, including the research, potential benefits, safety considerations and costs parents should know before considering it for their child. Read More My child has just been diagnosed with IBD. What happens now? A practical guide for parents covering Crohn’s disease, ulcerative colitis, treatment, medications, tests, nutrition, school, flares and supporting your child in the early days. Read More Creating an IBD school support plan Learn how to create a practical school support plan for your child with IBD, covering toilet access, flares, fatigue, medication, absences, learning, PE, camps and emotional wellbeing. Read More

Explore IBD topics for parents and carers, including Crohn’s disease, ulcerative colitis, symptoms, treatment, flares, food, school, growth and everyday life. Gut Health & Wellbeing Explore how nutrition, gut health, lifestyle changes and complementary approaches may support your child’s wellbeing with IBD. Learn about probiotics, supplements and emerging research to help you make informed decisions. More to explore Gut Health & Wellbeing Family & Relationships Tests & Procedures Parent Wellbeing Managing day to day Appointments Mental Wellbeing Growth & Puberty School Food & Nutrition Medication New Diagnosis Flares Some topics on IBD Kids are written directly for kids and teens. Looking for information for your child? Explore Kids & Teens Can't find what you're looking for? We're here to help. Ask a question Ask a question Search Can't find what you're looking for? Search IBD Kids Australia

Hospital & Appointments What to expect when you need an iron infusion Find out why you might need an iron infusion, what happens during the appointment, possible side effects, and how it can help you feel better when you have IBD. If you have Crohn’s disease or ulcerative colitis, your doctor might tell you that your iron levels are low and you need an iron infusion. You might be wondering what that means, whether it will hurt, or what happens during the appointment. First, take a deep breath! An iron infusion is a way of giving your body iron through a drip into a vein. It can help build up your iron levels when you don't have enough, especially if iron tablets haven't helped or aren't suitable for you. Let's walk through what happens, step by step, so you know what to expect. 🩸 Why might you need an iron infusion? Iron helps your body make haemoglobin, a protein in your red blood cells that carries oxygen around your body. When you have IBD, your iron levels can become low for several reasons, including: Losing blood through your bowel. Inflammation making it harder for your body to use iron properly. Not getting enough iron from the food you eat. Having trouble absorbing enough iron from your digestive system. Low iron can sometimes lead to iron deficiency anaemia, which means your body doesn't have enough healthy red blood cells or haemoglobin to carry oxygen around properly. You might notice that you're feeling extra tired, dizzy, weak, or short of breath. You may also find it harder to concentrate at school or keep up with your usual activities. An iron infusion can help restore your iron levels and may help you feel better as your body recovers. 💉 What is an iron infusion? An iron infusion is a treatment that delivers iron directly into your bloodstream through a small tube called a cannula. Unlike iron tablets, which you swallow, an infusion allows iron to enter your bloodstream without needing to be absorbed through your gut first. Your doctor might recommend an infusion if: Your iron levels are very low. Iron tablets haven't worked well enough. Iron tablets cause tummy pain, nausea, constipation, or other side effects. Your IBD makes it difficult to absorb enough iron. You need to replace iron more quickly. Depending on your iron levels, your weight, and the type of iron used, you may need one infusion or more than one. 🏥 Where will you have your iron infusion? Your infusion will usually take place at a hospital or an infusion clinic, where healthcare professionals can look after you during the treatment. You might have your infusion in a day treatment unit, which means you can usually go home afterwards rather than staying overnight. Your doctor or nurse will explain where you need to go, how long your appointment is likely to take, and whether you need to do anything to prepare. 📝 How to prepare for your appointment Before your infusion, your healthcare team will give you instructions about what to do. Here are a few things that might help you get ready: Eat and drink as advised. You can usually eat and drink normally before an iron infusion unless your healthcare team tells you otherwise. Wear comfortable clothes. Choose something with sleeves that can be rolled up easily so the nurse can reach your arm. Bring something to do. A book, headphones, a tablet, or a game can help pass the time. Ask someone to come with you. A parent or trusted adult can help you feel more comfortable. Tell your team about allergies or previous reactions. It's important that they know about any medicines or treatments that have caused problems before. If you're worried about needles, let your nurse know before the appointment. They can help you work out ways to make the experience less stressful. 💉 What happens during an iron infusion? Knowing what will happen can make the appointment feel less scary. Here's what usually happens. 1. Checking your details Your nurse will check your details, ask about your health and any allergies, and explain the treatment. They may check your temperature, pulse, and blood pressure. 2. Putting in a cannula The nurse will place a small plastic tube called a cannula into a vein, usually in your hand or arm. You'll feel a quick pinch when the needle goes in, but the needle is removed, leaving the soft plastic tube in place. 3. Giving you the iron The iron is given through the cannula, usually mixed with a fluid in a drip or administered according to the instructions for that particular product. The infusion may take around 15 minutes to an hour or longer, depending on the type of iron you're given. 4. Keeping an eye on you Your healthcare team will monitor you during the infusion and check how you're feeling. Tell your nurse straight away if you notice anything unusual, such as itching, dizziness, a rash, or difficulty breathing. 5. Removing the cannula Once the treatment is finished and your team is happy that you're okay, the cannula will be removed. A small dressing will be placed over the spot. You can usually go home afterwards, but you'll need to follow your team's instructions about how long to stay for observation. 😬 Does an iron infusion hurt? The infusion itself shouldn't usually hurt. You might feel a quick sting when the cannula is inserted, and you may notice some discomfort while it is in your arm. Tell your nurse if the area around the cannula becomes painful, swollen, or uncomfortable during the infusion. Iron leaking outside the vein can sometimes irritate the skin and may cause long-lasting staining, so it's important to speak up straight away. If you're nervous about the cannula, you can ask your healthcare team whether numbing cream is an option. 🤢 Can you get side effects? Most people tolerate iron infusions well, but side effects can happen. Some people experience: A headache. Feeling sick or nauseous. Dizziness. Flushing or feeling warm. Muscle or joint aches. Changes in blood pressure. These symptoms are often mild, but you should tell your healthcare team if you feel unwell during or after your infusion. Serious allergic reactions are rare but can happen. Get urgent medical help if you develop difficulty breathing, swelling of your lips or throat, or feel as though you're going to collapse. Sometimes, tiredness, muscle aches, or joint aches can develop after the infusion rather than during it. Your healthcare team can explain what to look out for and what to do if you feel unwell at home. 🏡 What happens after your iron infusion? After your infusion, you can usually go home the same day. You might feel completely fine, or you may feel a little tired or have a headache. Follow any instructions your healthcare team gives you about resting, drinking fluids, and returning to your usual activities. Your iron levels won't necessarily improve overnight. It can take days to weeks for your body to use the extra iron, and it may take longer for symptoms such as tiredness to improve. Your doctor may arrange follow-up blood tests to check your iron levels and see how well the treatment has worked. If you continue to feel very tired, dizzy, or short of breath, let your healthcare team know rather than assuming you just need to wait longer. 💪 Will an iron infusion give you more energy? If low iron is causing your tiredness, an iron infusion may help you feel more energetic as your iron levels recover. You might find it easier to concentrate at school, take part in sport, or enjoy your usual activities again. However, if your tiredness is also caused by active IBD, poor sleep, or another problem, an iron infusion might not fix everything on its own. Your IBD team can help work out what else might be contributing to how you feel. 💙 Remember, it's okay to ask for help Having an iron infusion might feel a little scary if you've never had one before, but your healthcare team will explain what they're doing and help you feel as comfortable as possible. You don't have to pretend you're not nervous. It's okay to ask questions, bring something to distract you, or tell your nurse if you need some reassurance. The most important thing to remember is that you're not expected to know everything or handle it all on your own. Your healthcare team is there to help you, and your questions and feelings matter. 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

Hospital & Appointments What to pack in your hospital bag Find out what to pack for a hospital stay when you have IBD, from comfortable clothes and toiletries to entertainment and essentials that help you feel more at home. If you have Crohn’s disease or ulcerative colitis, you might need to stay in hospital sometimes. It could be for tests, treatment, surgery, or because your symptoms have become difficult to manage at home. Staying in hospital can feel a little scary, especially if you don't know how long you'll be there. Packing a bag with the things you need can help you feel more comfortable and make your stay a little easier. You don't need to pack everything you own! Here are some ideas to help you get ready. 🎒 The essentials These are the things you'll probably want to pack first. Comfortable clothes: Pack loose-fitting tops, trousers, shorts, and underwear. Soft waistbands can be especially helpful if your tummy feels sore or swollen. Pyjamas: Bring something comfortable to sleep in. Slippers or comfortable footwear: These make walking around your hospital room easier. Toiletries: Pack your toothbrush, toothpaste, hairbrush, deodorant, and any other everyday items you use. Glasses or contact lenses: If you need them to see clearly, remember to bring them and their case. A phone and charger: Your phone can help you stay connected with family and friends. Headphones: These are useful for listening to music, watching videos, or having some quiet time. If you know how long you'll be staying, you can pack enough clothes and toiletries for that time. If your admission is unexpected, don't worry. Your parent, carer, or another trusted person can often bring extra things later. 🧸 Things to help you feel comfortable Hospitals can feel unfamiliar, and it's normal to miss the comfort of your own home. Packing a few familiar things can help make your hospital room feel more like your own space. Consider bringing: Your favourite pillow or a small blanket, if the hospital allows it. A soft toy or comfort item, especially if it helps you feel calmer. A favourite book or magazine. A small photo of your family, friends, or pets. Your own cosy socks or a comfortable dressing gown. Lip balm and moisturiser, if you like using them. You don't have to stop bringing comfort items just because you're getting older. If something helps you feel safe and relaxed, it's worth considering. 🎮 Things to keep you entertained There can be quite a bit of waiting in hospital, especially when you're having tests or waiting for doctors to visit. Bring a few things to keep you occupied when you're feeling well enough. Your phone or tablet: Download games, music, podcasts, or videos before you go in, in case the internet is slow or unavailable. Books or comics: Great for when you want a break from screens. Colouring books or drawing supplies: Useful if you enjoy being creative. A notebook or journal: You could write down your thoughts, draw pictures, or keep track of questions for your doctors. Small games or puzzles: These can help pass the time and give you something to do with visitors. You might not always feel like doing much, particularly if you're tired or unwell. That's completely okay. Resting is important, too. 🩺 Things to bring for your IBD Because you have IBD, there are a few extra things that may be useful to pack. Your medication list: Write down the medicines you take, including doses and how often you take them. Your medication details: Bring information about your current treatment and any allergies or previous reactions to medicines. Your IBD team's contact details: These may come in handy if your family needs to contact your usual healthcare team. Comfortable underwear and extra clothes: These can be helpful if you have diarrhoea, accidents, or unexpected changes in your symptoms. Period products: If you have periods, pack the products you normally use. A water bottle: Bring one if the hospital allows it and your healthcare team hasn't given you different instructions. Always check with your hospital about whether you should bring your own medication. Some hospitals prefer to supply and manage your medicines during your stay. 🚽 Things that can help with toilet worries If you have IBD, you might worry about needing the toilet urgently or having an accident while you're away from home. Packing a few extra items can help you feel more prepared. Extra underwear: Having spare pairs can give you peace of mind. Spare trousers or shorts: Useful if you have an accident or spill something. Wet wipes or soft toilet paper: These may help if your bottom is sore, but check with your hospital before flushing wipes. A small bag for dirty clothes: This can keep used clothing separate from clean items. Your usual gentle skin-care products: If you use a barrier cream or another product recommended by your healthcare team, ask whether you should bring it. You don't need to feel embarrassed about packing these things. Hospital staff understand that bowel symptoms are part of living with IBD, and they are there to help you. 🧴 Toiletries and personal-care items Having your usual toiletries can help you feel more like yourself while you're in hospital. You might want to pack: Toothbrush and toothpaste. Shampoo and conditioner. Body wash or soap. Hairbrush or comb. Deodorant. Moisturiser and lip balm. Hair ties or clips. Sanitary products, if needed. Any other personal-care items you use regularly. Travel-sized products can save space in your bag. If your skin is sensitive, bring products you already know work well for you. 👕 What should you wear to hospital? Choose clothes that are easy to put on and take off. You may need to change into a hospital gown for certain tests or procedures. Good options include: Loose-fitting T-shirts. Soft trousers or shorts. Comfortable underwear. Slip-on shoes or slippers. A warm jumper or dressing gown. If your tummy is painful or bloated, tight waistbands might feel uncomfortable. Choose clothes that don't press against your abdomen. It's also helpful to have an outfit ready for going home, so you don't have to think about what to wear when you're ready to leave. 📄 Important things your parent or carer may need If you're going into hospital with a parent or carer, they may need to organise some practical things, too. These might include: Hospital admission information. Medicare details and other relevant documents. A list of your medications and allergies. Contact details for your family and healthcare team. Phone chargers and other essential items. Your parent or carer can check with the hospital about what paperwork is needed and whether there are any special instructions for your admission. 🚫 What not to pack You don't need to bring everything from home. Some things are better left behind. Try to avoid packing: Expensive jewellery or valuables. Large amounts of cash. Too many toys, books, or electronic devices. Strongly scented products that might bother other patients. Food or drinks that your healthcare team has told you not to have before a test or procedure. Hospitals may have different rules about electrical devices, food, and personal belongings, so check before you go. 💙 Remember, you don't have to pack alone Preparing for a hospital stay can feel overwhelming, especially if you're already feeling unwell. You don't need to organise everything yourself. Ask your parent, carer, or another trusted person to help you make a list and pack your bag. If your admission is unexpected, it's okay if you don't have everything with you. The hospital can help with many basic needs, and someone can often bring extra items later. The most important things to bring are the essentials, a few comforts, and anything that helps you feel more like yourself. You don't need a perfect hospital bag to get through your stay. 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

Hospital & Appointments Blood tests explained: what are doctors looking for? Learn why blood tests are important when you have IBD, what doctors are looking for, and how they help monitor inflammation, nutrition, and medication safety. If you have Crohn’s disease or ulcerative colitis, you’ll probably have blood tests from time to time. You might have them during a hospital appointment, at a local blood collection centre, or before starting a new medication. Blood tests help your IBD team understand what’s happening inside your body. They can check for signs of inflammation, see whether you’re getting the nutrients you need, and make sure your medication is safe. You might wonder why you need blood tests when you’re already feeling better. That’s because IBD can sometimes cause changes inside your body even when you don’t notice any symptoms. Let’s look at what your doctors are checking for. 🩹 Checking for inflammation Crohn’s disease and ulcerative colitis cause inflammation in your digestive system. Blood tests can help your doctor look for signs that inflammation might be happening. Two things doctors often check are: CRP (C-reactive protein): This is a substance your liver makes when there is inflammation in your body. A higher level can be a sign that inflammation is present. ESR (erythrocyte sedimentation rate): This test looks at how quickly your red blood cells settle in a tube. A higher result can sometimes indicate inflammation. If these levels are high, your doctor may want to investigate further or check whether your treatment needs adjusting. However, blood tests don’t always show inflammation, even when your IBD is active. That’s why your team looks at your symptoms and other test results, too. 🩸 Checking for anaemia and low iron Have you ever felt unusually tired, dizzy, weak, or short of breath? Sometimes, these feelings can be caused by anaemia. Anaemia happens when your body doesn’t have enough healthy red blood cells or haemoglobin to carry oxygen around your body. Your IBD team may check: Haemoglobin: A protein in red blood cells that carries oxygen around your body. Red blood cell count: This measures how many red blood cells you have. Ferritin: A protein that stores iron in your body. Low ferritin can mean your iron stores are running low. IBD can contribute to anaemia because inflammation can affect how your body uses iron, and bleeding from your bowel can cause you to lose it. You might also struggle to get enough iron from food. If your iron levels are low, your doctor may recommend changes to your diet, iron supplements, or iron given through a drip, depending on what you need. 🥗 Checking your vitamins and nutrients Your body needs vitamins and minerals to grow, repair itself, and give you energy. Sometimes, IBD can make it harder for your body to absorb certain nutrients, especially if your small intestine is affected. Eating less when you feel unwell can also make it harder to get everything you need. Your doctor may check nutrients such as: Vitamin B12: Helps keep your nerves and blood cells healthy. Folate: Helps your body make new cells and red blood cells. Vitamin D: Helps your body absorb calcium and keep your bones strong. Albumin: A protein in your blood that can give your doctor information about inflammation, nutrition, and your general health. Not everyone needs all these tests at every appointment. Your IBD team will decide which ones are useful for you. If your levels are low, they can help you work out how to get the nutrients your body needs. 💊 Making sure your medication is safe Some IBD medications need regular blood tests to make sure they’re working safely and aren’t causing problems. Depending on your medication, your doctor may check: Liver function: To see whether your liver is working properly. Kidney function: To check how well your kidneys are working. White blood cells: These help your body fight infections. Platelets: These help your blood clot when you have a cut or injury. Certain medications can affect your liver, kidneys, or blood cells, so these checks help your team spot possible problems early. You may need blood tests more often when you first start a medication or change your dose. Once things are stable, you might not need them as frequently. Even if you feel completely fine, it’s important to attend your blood tests when your team recommends them. 📊 Understanding your blood test results When you receive your results, you might see lots of numbers and medical words that don’t make much sense. Most blood tests have a reference range, which shows the range of results usually expected in a particular group of people. Your results may be marked as high or low if they fall outside this range. But a result outside the reference range doesn’t automatically mean something is wrong. Your age, medication, symptoms, and other results all help your doctor understand what it means. Your doctor will look at the whole picture rather than relying on just one number. It’s also helpful to compare results over time. For example, if your inflammation markers are getting lower, this may suggest your treatment is helping. 😟 Does having a blood test hurt? It's normal to feel nervous about having blood taken, especially if you've had lots of tests already. A healthcare professional will usually clean a small area of your arm, place a tight band around it, and insert a small needle into a vein to collect your blood. You might feel a quick scratch or pinch, but the uncomfortable part usually doesn't last long. Afterwards, they'll remove the needle and put a small plaster over the spot. Here are some things that might help: Tell the person taking your blood if you're worried or have felt faint during a blood test before. Look away if watching the needle makes you uncomfortable. Bring headphones and listen to music or a podcast. Take slow breaths and try to relax your arm. Ask to lie down if you feel faint or think you might become dizzy. If you're allowed to drink before your test, having water can sometimes make it easier to find a vein. Some blood tests require fasting, so check your instructions beforehand. ⏰ How often will you need blood tests? How often you need blood tests depends on your IBD, your symptoms, and the medication you take. You might need them more frequently if: You've recently been diagnosed with IBD. You're starting a new medication. Your doctor is checking whether a treatment is working. You've been having more symptoms than usual. Your previous results showed something that needs monitoring. If your IBD is stable and your medication doesn't require frequent monitoring, you may have fewer blood tests. Your IBD team will let you know when your next tests are due. If you're unsure, it's always okay to ask. 💙 Remember, blood tests help your team look after you Blood tests are an important part of managing Crohn’s disease and ulcerative colitis. They help your doctors check for inflammation, monitor your nutrition, spot anaemia, and make sure your medication is safe. You don't need to understand every number on your results. Your healthcare team can explain what they mean and what, if anything, needs to happen next. If you have questions about your results, write them down and take them to your next appointment. Understanding a little more about your blood tests can help you feel more confident about looking after your health. Previous Next Found this helpful? Share it with a friend, parent, teacher, or someone who might need it. 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Growth & Puberty Why your body needs extra nutrients while growing Discover why your growing body needs extra nutrients, which vitamins and minerals matter most, and how IBD can affect nutrition, growth and development. Growing up takes a lot of energy! As you get taller, build muscles, develop bones and go through puberty, your body needs the right nutrients to help everything work properly. If you have Crohn’s disease or ulcerative colitis (IBD), getting enough nutrients can be especially important. IBD can sometimes make it harder for your body to absorb nutrients, eat enough food or keep up with the extra energy it needs. The good news is that there are ways to support your body as it grows. Let's look at why nutrients matter and how you can get what you need. 🌱 Why does my body need extra nutrients? Your body is constantly growing and changing, especially during childhood and puberty. Nutrients help your body do all sorts of important jobs, including: Building strong bones and teeth. Helping your muscles grow and repair. Giving you energy to learn, play and enjoy your favourite activities. Supporting your immune system, which helps protect you from infections. Making new blood cells that carry oxygen around your body. Helping your brain and nervous system work properly. Think of nutrients as the building blocks your body uses to grow, repair and stay healthy. If you don't get enough of certain nutrients over time, your growth and development can be affected. 🥗 Which nutrients are important for growing? Your body needs a mixture of nutrients, and each one has a different job to do. 🥚 Protein Protein helps build and repair muscles and other body tissues. You need it as you grow, recover from illness and stay active. You can find protein in foods such as eggs, chicken, fish, meat, beans, lentils, tofu and yoghurt. 🦴 Calcium and vitamin D Calcium helps build strong bones and teeth, while vitamin D helps your body absorb calcium. Your bones grow and strengthen throughout childhood and adolescence, so getting enough of both is important. Calcium is found in dairy products, calcium-fortified plant milks, tofu made with calcium and some other foods. Vitamin D can be found in foods such as oily fish, eggs and fortified products. Your healthcare team can help you work out whether you're getting enough, especially if you avoid dairy or have difficulty eating a variety of foods. 🩸 Iron Iron helps your body make haemoglobin, a protein in red blood cells that carries oxygen around your body. If you don't get enough iron, you may feel tired, weak or less able to concentrate. Iron is found in foods such as meat, beans, lentils, tofu and iron-fortified cereals. Some kids with IBD develop low iron levels because of inflammation, bleeding from the bowel or not getting enough iron from food. Your doctor may check your iron levels with blood tests. 🍞 Carbohydrates and healthy fats Carbohydrates provide energy for your everyday activities, while fats provide energy, help your body absorb certain vitamins and support brain development. Foods such as bread, rice, potatoes, oats, fruit, olive oil, avocado, nuts and seeds can help supply these nutrients. Your body needs enough energy to grow, so you don't need to avoid carbohydrates or fats to be healthy. 🍊 Vitamins and minerals Your body also needs nutrients such as zinc, folate, vitamin B12 and vitamin C. They help with growth, making new cells, supporting your immune system and keeping different parts of your body working properly. Eating a variety of foods can help you get many of these nutrients. However, some people with IBD need extra support if their bodies aren't absorbing enough or their diets are limited. 🩺 Why can getting enough nutrients be harder with IBD? IBD can sometimes make it more difficult to get all the nutrients your body needs. Here are a few reasons why: Inflammation: When your bowel is inflamed, your body may need more energy and protein. Less appetite: Stomach pain, nausea or feeling full quickly can make eating difficult. Diarrhoea: Frequent diarrhoea can cause your body to lose extra fluid and minerals. Trouble absorbing nutrients: Inflammation or surgery affecting parts of your digestive system can make it harder to absorb certain nutrients. Food restrictions: If you avoid certain foods because they make your symptoms worse, you might miss out on some important nutrients unless you find suitable alternatives. This doesn't mean you will automatically have nutrient deficiencies because you have IBD. It simply means your healthcare team may pay extra attention to your nutrition and growth. 🚀 What happens if I don't get enough nutrients? If your body doesn't get enough energy or particular nutrients over time, you might notice that you're more tired than usual, find it harder to concentrate or struggle to keep up with your usual activities. Not getting enough nutrients can also affect your growth, bone strength and development during puberty. Sometimes, there aren't any obvious signs at first. That's one reason why your IBD team may monitor your height, weight and blood tests even when you're feeling okay. If you're worried about your growth, appetite or energy levels, tell your healthcare team. They can help work out whether your body is getting what it needs. 🍽️ How can I give my body the nutrients it needs? You don't have to eat perfectly to support your growth. Small, manageable habits can make a difference. Here are some things you can try: Eat regularly: Meals and snacks help provide energy throughout the day. Include different foods: When you can tolerate them, try a variety of protein foods, grains, fruit, vegetables and sources of healthy fats. Choose foods you enjoy: Eating should be enjoyable, not something that makes you feel stressed. Find alternatives that work for you: If certain foods trigger symptoms or you avoid them for another reason, ask your dietitian about suitable replacements. Drink enough fluids: This is especially important if you have diarrhoea. Ask for help when eating is difficult: Your healthcare team can suggest ways to get enough nutrition when your appetite is low or your symptoms are active. During a flare, you may need to adjust what you eat depending on your symptoms. There isn't one diet that works for every person with IBD, so it's best to get advice that suits your needs. 💊 Do I need vitamins or supplements? Not everyone with IBD needs supplements. Some people get everything they need from food, while others may need extra vitamins, minerals, iron or other nutritional support. Your healthcare team might recommend blood tests to check for deficiencies and help decide whether a supplement is needed. It's important not to start taking lots of supplements on your own. Some can be harmful in large amounts, and not every supplement is suitable for everyone. If you're struggling to eat enough, your dietitian may also suggest nutritional drinks or other ways to help you meet your body's needs. 💙 What if I'm worried about my growth? If you're shorter than your friends, losing weight, feeling exhausted or worried that your body isn't developing as expected, it's okay to ask for help. Your IBD team can check your growth over time, look for nutritional deficiencies and help you find ways to support your body. You haven't done anything wrong if you're finding it difficult to eat enough or get the nutrients you need. IBD can make things more complicated, and you deserve support. ⭐ Remember Your body is doing lots of important work as you grow, and nutrients help it build strong bones, develop muscles, produce energy and support puberty. Having IBD can sometimes make getting enough nutrients more challenging, but your healthcare team can help you work out what your body needs. You don't need to eat perfectly. The goal is to give your growing body the nourishment, care and support it needs to help you feel your best. 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

Growth & Puberty How steroids can change your appearance Learn how steroids used to treat IBD can affect your face, weight and skin, why these changes happen, and how to cope with side effects and body image worries. If you have Crohn’s disease or ulcerative colitis (IBD), you might take steroid medicines such as prednisolone to help calm inflammation during a flare. Steroids can be really helpful when your IBD symptoms are making you feel unwell. But they can also cause changes to your appearance, especially if you take them at higher doses or for several weeks or longer. You might notice your face looks rounder, your skin changes or your weight goes up. These changes can feel strange or upsetting, especially if you weren't expecting them. Remember, these changes aren't your fault, and they don't change who you are. Let's look at why they happen and what you can do if they bother you. 💊 What are steroids? Steroids are medicines that reduce inflammation in your body. Doctors sometimes prescribe them to help control Crohn’s disease or ulcerative colitis when symptoms get worse. One steroid used for IBD is called prednisolone. It can help reduce symptoms such as diarrhoea and stomach pain while your treatment plan gets your inflammation under control. Steroids are usually used for a limited time because taking them for longer periods can cause side effects. Your doctor will explain how to take them and how to reduce the dose safely. Never stop taking steroids suddenly or change your dose without medical advice. 😊 Why can steroids make my face look different? One change some people notice is that their face becomes rounder or puffier. Steroids can change how your body stores fat and how much fluid it holds. This can make your cheeks look fuller and your face appear rounder than usual. You might notice the change when you look in the mirror or see photographs of yourself. Other people might notice it too, which can feel uncomfortable. It's important to know that this is a recognised side effect of steroids. It doesn't mean you've done anything wrong, and it isn't necessarily a sign that your IBD is getting worse. ⚖️ Can steroids make me gain weight? Yes, steroids can sometimes cause weight gain. They can make you feel hungrier than usual, so you might want to eat more often. They can also cause your body to hold on to extra fluid and change where fat is stored. You might notice: Your face looks fuller. Your tummy or waist looks different. Your clothes fit differently. Your weight increases more quickly than you expected. These changes can be frustrating, particularly if your weight was already changing because of IBD. Try not to blame yourself or feel that you need to change your eating to make the weight go away. Your body needs enough food and energy to grow, recover and stay healthy. If you're worried about your weight, your doctor or dietitian can help you understand what's happening and support you through treatment. 🧴 Can steroids affect my skin? Steroids can sometimes cause changes to your skin, particularly when you take them for several weeks or longer. You might notice: Spots or acne: Your skin may become more spotty than usual. Easier bruising: You might bruise more easily, even after a small bump. Stretch marks: You may develop lines on your skin, especially if your body changes size quickly. Thinner skin: Your skin may become more delicate with longer-term steroid use. These changes don't happen to everyone. If you notice a skin change that worries you, let your healthcare team know. Try not to pick at spots or use strong skin treatments without checking that they're suitable for you. 💙 What if I feel embarrassed about how I look? It can be hard when your appearance changes because of medication, especially if you feel like your body no longer looks the way it did before. You might worry about what your friends think, feel uncomfortable in photographs or wish the changes would disappear. All these feelings are understandable. You can be grateful that a medicine is helping your IBD and still feel upset about its side effects. Here are some things that might help: Talk about how you feel. A parent, carer, friend, school counsellor or IBD nurse can listen and help you work through your worries. Give yourself time. Your appearance may change as your treatment progresses, and some side effects can improve after steroids are reduced or stopped. Wear clothes that feel comfortable. You don't need to hide your body or fit into your old clothes. Take a break from comparisons. Your body is dealing with a health condition, and comparing yourself with other people may make you feel worse. Remember what your body is doing for you. It is working hard to recover, even when the changes are difficult to accept. You don't have to pretend you're happy about every side effect. It's okay to ask for help if the changes are affecting your confidence. ⏳ Will my appearance go back to normal? For many people, some appearance-related side effects improve after their steroid dose is reduced or treatment ends. For example, facial puffiness and fluid retention may gradually settle, while appetite and weight may change over time. Skin changes can take longer to improve, and some stretch marks may not disappear completely. Everyone is different, so it's difficult to predict exactly how quickly your body will change. Your doctor will work with you to manage your IBD and reduce steroid treatment safely when appropriate. They may also discuss other treatments to help keep your IBD under control and reduce the need for repeated steroid courses. Never stop steroids suddenly just because you don't like the changes to your appearance. Your doctor can help you find the safest way forward. 🩺 When should I talk to my IBD team? Tell your IBD team if changes to your appearance are worrying you or affecting how you feel about yourself. You should also let them know if you experience side effects that are difficult to manage, such as significant weight changes, troublesome acne or unusual bruising. Your team can explain which changes may be related to steroids, check for other possible causes and discuss ways to help. If you're struggling with how you look, you can ask for emotional support too. Looking after your confidence is an important part of looking after your health. 💬 What if people ask why I look different? Sometimes, people ask questions because they're curious. Other times, their comments can feel hurtful, even if they don't mean to upset you. You don't have to explain your medication or share personal health information if you don't want to. You could say: "It's a side effect of some medicine I'm taking." "My body has changed a bit because of my treatment." "I'd rather not talk about how I look." You can keep your answer short, change the subject or talk to a trusted adult if someone's comments are upsetting you. ⭐ Remember Steroids can change your face, weight and skin, but these changes don't define you. The medicine is being used to help manage your IBD, and your healthcare team can support you with side effects along the way. It's okay to have days when you feel frustrated or don't recognise yourself in the mirror. You deserve kindness and support while your body goes through these changes. You are still you, no matter what your medication does to your appearance. This article is for general information only and is not a substitute for medical advice. Steroid side effects can vary from person to person. Always speak to your IBD team about concerns or changes to your medication. Never stop taking steroids or change your dose without medical 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

Growth & Puberty Understanding puberty when you have Crohn’s disease or ulcerative colitis Understand how Crohn’s disease and ulcerative colitis can affect puberty, why your body might develop differently, and how to feel confident and supported as you grow. Puberty is a time when your body starts changing from a child's body towards an adult body. You might grow taller, notice changes in your body shape, develop body hair, or experience new feelings and emotions. Everyone goes through puberty at their own pace. But if you have Crohn’s disease or ulcerative colitis (IBD), some of these changes might happen a little later than they do for your friends. If you've ever wondered why your body seems to be changing differently, you're not alone. Let's look at what puberty means when you have IBD and what you can do to look after yourself. 🌱 What happens during puberty? Puberty is a normal part of growing up. Your body produces hormones that help you develop and mature. During puberty, you might notice changes such as: Growing taller and gaining weight. Your body shape changing. Hair growing under your arms and around your private parts. Your skin becoming oilier or developing spots. Feeling different emotions or experiencing mood changes. Your voice getting deeper, if you have a voice that deepens during puberty. Your breasts developing and your periods starting, if you have periods. Your penis and testicles growing, if you have them. These changes don't all happen at once. Some people start puberty earlier, while others start later. Both can be completely normal. 🦋 Can IBD affect puberty? Yes, IBD can sometimes affect when puberty starts and how quickly your body develops. When your bowel is inflamed, your body needs extra energy to manage that inflammation. You might also have trouble absorbing nutrients, lose your appetite or struggle to eat enough when you're feeling unwell. This can make it harder for your body to get everything it needs for growth and development. Some IBD medications, particularly steroids such as prednisolone, can also affect growth when used for long periods or in repeated courses. As a result, some kids and teens with IBD go through puberty later than their friends. This doesn't mean you'll always be behind. When your IBD is well controlled and your body gets the nutrition it needs, growth and puberty may catch up. 📏 Why is everyone developing before me? It can be hard when your friends suddenly seem taller, look older or start talking about changes you haven't experienced yet. You might wonder if something is wrong with you or feel embarrassed about looking younger than other people your age. Remember that everyone has their own timeline. Some people start puberty early, while others develop later. Having IBD can sometimes affect this timing, but it doesn't mean your body is broken or that you've done anything wrong. If you're worried that you're not developing as expected, your IBD team can check your growth and help you understand what's happening. 💙 What if I feel embarrassed about my changing body? Puberty can bring lots of feelings, even without IBD. When your body changes differently from your friends' bodies, it can feel even more complicated. You might feel uncomfortable getting changed for sport, worry about what people think or feel frustrated when your clothes fit differently. Here are some things that might help: Be patient with yourself. Your body is developing in its own time. Wear clothes that make you comfortable. You don't have to dress like everyone else. Talk to someone you trust. A parent, carer, school counsellor or IBD nurse can help if you're feeling worried. Remember that bodies are different. There isn't one correct way to look during puberty. Take a break from comparisons. Everyone's body develops differently, even if it doesn't always look that way. You don't have to feel confident about every change. It's okay to have questions, feel awkward or need some time to adjust. 🥗 How can I support my body during puberty? Your body needs extra energy and nutrients while you're growing. Looking after yourself can help support healthy development and make it easier to manage your IBD. Try to: Eat regular meals and snacks to give your body enough energy. Include a variety of foods that you tolerate well. Take your IBD medication as prescribed. Tell your healthcare team if symptoms make it difficult to eat. Attend your check-ups so your team can monitor your growth and development. Get enough sleep and rest when you need it. If you're struggling to eat enough or your growth has slowed, your healthcare team might recommend seeing a dietitian or checking whether you need extra nutritional support. You don't need to follow a perfect diet. The goal is to give your body the support it needs. 🩺 How can my IBD team help? Your IBD team can monitor your height, weight and development as you grow. They may ask questions about puberty, check blood tests and look at your growth over time. If they notice that puberty is happening later than expected, they can investigate possible reasons and discuss what support might help. Sometimes, they may recommend seeing a specialist who focuses on hormones, growth and puberty. It's important to tell your team if you're worried, even if you feel embarrassed asking questions. They are used to talking about these changes and want to help you feel comfortable and healthy. 💬 What questions can I ask my doctor? You can ask anything you're curious or worried about. For example: "Could my IBD be affecting my puberty?" "Is my growth happening at the right pace?" "Will I catch up with my friends?" "Could my medication be affecting my development?" "Is there anything I can do to help my body grow?" If you'd prefer to talk without your parent or carer in the room, you can ask your healthcare team whether you can have some time to speak privately. There are no silly questions when it comes to understanding your body. ⭐ Remember Puberty can feel confusing, especially when you're also managing Crohn's disease or ulcerative colitis. Your body might develop at a different pace from your friends, but that doesn't mean you've done anything wrong. With the right treatment, nutrition and support, your healthcare team can help you look after your growth and development. Your body has its own timeline. You deserve to feel supported, respected and comfortable with who you are at every stage of growing 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

Growth & Puberty Coping with weight changes caused by IBD or its medication Learn why IBD and its medications can cause weight changes, how to cope with body image worries, and ways to look after yourself with confidence. Having Crohn’s disease or ulcerative colitis (IBD) can sometimes change your weight. You might lose weight during a flare, gain weight when taking certain medications, or notice that your body shape changes as you grow up. These changes can feel confusing or upsetting, especially when your body looks different from your friends' bodies or changes in ways you weren't expecting. Remember, weight changes aren't your fault, and they don't define who you are. ⚖️ Why can IBD affect my weight? IBD can affect your appetite, digestion and the way your body uses energy. This means your weight might go up or down depending on how you're feeling and how active your IBD is. Some reasons for weight changes include: Flare-ups: Stomach pain, diarrhoea, nausea and a reduced appetite can make it harder to eat enough, which may lead to weight loss. Inflammation: Your body may use more energy when it's dealing with inflammation. Medication: Some medicines, particularly steroids such as prednisolone, can increase your appetite and cause weight gain or puffiness. Feeling better: When your symptoms improve, your appetite may return, and you might regain weight you lost during a flare. Growing and puberty: Your body naturally changes shape and weight as you grow, even when your IBD is well controlled. Everyone's experience is different. Some people lose weight, some gain weight, and others notice very little change. 💊 How can medication change my weight? Some IBD medications can affect your appetite, weight or body shape. For example, steroids can make you feel hungrier than usual. They can also cause your body to hold on to more fluid, which may make your face look rounder or your body feel puffier. These changes can be frustrating, especially if they happen quickly. They aren't necessarily permanent, and some changes improve when your treatment changes or your steroid dose is reduced. Never stop taking your medication or change your dose on your own. If you're worried about changes to your weight or appearance, talk to your IBD team. They can explain what might be happening and discuss your options. 💙 What if I feel uncomfortable about my body? It can be difficult when your body changes in ways you didn't choose. You might feel embarrassed, frustrated or worried about what other people think. You might also compare yourself with friends, feel uncomfortable in certain clothes or wish your body looked the way it did before. If this sounds familiar, here are some things that might help: Be kind to yourself. Your body is dealing with a lot, and it deserves care and patience. Focus on how you feel. Think about your energy, strength and how well you're managing your day rather than judging yourself by your weight. Wear clothes that feel comfortable. You deserve clothes that fit your body as it is today. Take a break from comparisons. Everyone's body develops differently, and social media doesn't always show the full picture. Talk to someone you trust. A parent, friend, nurse or counsellor can help you work through difficult feelings. You don't have to love every change your body goes through. It's okay to have mixed feelings while you learn to adjust. 🥗 How can I look after my body? When you have IBD, looking after your body means giving it the energy and nutrients it needs, not trying to force your weight in a particular direction. Here are some ways to support yourself: Eat regularly. Try to have meals and snacks throughout the day, especially if your appetite is low. Choose foods that work for you. During a flare, you might tolerate some foods better than others. Your dietitian can help you find options that suit your needs. Give yourself permission to rest. Fatigue is common with IBD, and you don't have to push through every day. Move in ways you enjoy. Walking, swimming, dancing or playing a sport can help you feel good, as long as it suits your energy levels and symptoms. Ask for support with food. If eating feels difficult or you're worried about your weight, your IBD team or dietitian can help. You don't need to skip meals, follow a restrictive diet or exercise to change your weight. Your body needs enough energy to heal, grow and stay strong. 🩺 When should I talk to my IBD team? Let your healthcare team know if you notice unexpected weight changes, especially if you're losing weight without trying, struggling to eat, feeling unusually tired or experiencing worsening symptoms. It's also worth speaking to them if medication is affecting your appetite, appearance or confidence. Your team can check whether your IBD is under control, review your medication and help you get the nutrition you need. You can also ask to speak privately if you're worried about your body image or find it difficult to talk about weight. You deserve support with how you feel, not just what the scales say. 💬 What if other people comment on my weight? Comments about your body can hurt, even when people don't mean to be unkind. You don't owe anyone an explanation about your weight or medication. If someone comments on your appearance, you could say: "My body has changed because of my IBD and medication." "I'd rather not talk about my weight." "I'm focusing on looking after my health." You can also change the subject or walk away. It's okay to set boundaries about what you're comfortable discussing. ⭐ Remember IBD and its medications can affect your weight and body shape, but these changes don't define you. Your body is doing its best to manage a complicated condition, and it deserves kindness, nourishment and care. You don't have to look a certain way to be healthy, confident or worthy of feeling good about 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

Growth & Puberty How IBD can affect your growth and development Learn how IBD can affect your height, weight and puberty, why everyone develops at a different pace, and how to support healthy growth. Growing up means lots of changes happen to your body. You might get taller, gain weight, develop new features and go through puberty. But if you have Crohn’s disease or ulcerative colitis (IBD), these changes might happen a little differently for you. If you feel like you’re growing slower than your friends or your body is changing at a different pace, you’re not alone. IBD can sometimes affect how your body grows and develops, but there are ways your healthcare team can help. 🌱 How does IBD affect growth? Your body needs energy and nutrients to grow. When you have IBD, a few things can make this harder: Inflammation: When your bowel is inflamed, your body uses extra energy to deal with it. Trouble absorbing nutrients: Inflammation can make it harder for your body to absorb some of the nutrients it needs. Eating less: Stomach pain, nausea or feeling full quickly can make it difficult to eat enough. Flare-ups: When your IBD is active, your body may need more energy while you might be eating less. Some medications: Steroids, such as prednisolone, can affect growth if you need them for a long time or have repeated courses. These things can sometimes mean you grow more slowly, gain weight differently or take longer to reach certain stages of development. 📏 Why am I shorter than my friends? Everyone grows at their own pace, and being shorter than your friends doesn't automatically mean something is wrong. However, some kids and teens with IBD grow more slowly than expected, especially if their inflammation isn't well controlled. You might notice that you're not getting taller as quickly as you used to. Your doctor will check your height and weight over time to see how you're growing. They might compare your growth with previous measurements and look at whether you're following your usual growth pattern. If your growth has slowed down, it doesn't mean you've done anything wrong. It could be a sign that your body needs extra support. 🦋 How can IBD affect puberty? Puberty is when your body starts changing from a child's body towards an adult body. These changes happen at different times for everyone. If you have IBD, especially if it's active, puberty might start later than it does for some of your friends. You might notice that: Your friends are growing taller or developing faster than you. Your voice, body shape or other physical features are changing later. Your periods start later than expected, if you have periods. You feel younger or look younger than people your age. This can feel frustrating or embarrassing, especially when everyone around you seems to be changing. But being a late bloomer doesn't mean you'll always be behind. When inflammation is controlled and your body gets the nutrition it needs, growth and puberty may catch up. If you're worried about your development, tell your IBD team. They can check whether everything is progressing as expected. 🥗 What can help me grow? Your body needs the right support to grow, develop and stay strong. Here are some ways to help: Eat enough: Try to eat regular meals and snacks to give your body the energy it needs. Get a variety of nutrients: Protein, calcium, vitamin D, iron and other nutrients all help support healthy growth. Take your medication as prescribed: Keeping inflammation under control can help your body grow and develop. Tell your team about symptoms: If you're struggling to eat, losing weight or having frequent flare-ups, let your healthcare team know. Keep up with check-ups: Your doctor can monitor your growth and check whether you need extra nutritional support. You might sometimes need supplements or special nutritional drinks. Your healthcare team can help you work out what's right for you. You don't need to follow a perfect diet or change your body to look like your friends. The goal is to give your body what it needs to grow in its own way. 🩺 How can my IBD team help? Your healthcare team can monitor your growth and puberty as part of your regular appointments. They might measure your height and weight, check blood tests or ask questions about your development. If they notice that you're growing more slowly than expected, they can investigate why and help you get the support you need. Sometimes, they may recommend seeing a dietitian or a specialist who focuses on growth and puberty. The earlier a problem is identified, the sooner they can help. 💙 What if I feel different from everyone else? It's completely understandable to feel upset, embarrassed or frustrated if your body looks different from your friends' bodies. You might feel left behind when everyone else seems to be growing taller, developing faster or talking about changes you haven't experienced yet. Remember: Your body isn't doing anything wrong. Everyone develops at a different pace. Having IBD doesn't mean you won't grow or develop. You don't have to explain your body to anyone unless you want to. It's okay to talk about your feelings with someone you trust. If comparing yourself with others is getting you down, try to remember that you can't always see what someone else is going through. Your body has its own timeline, and you deserve to feel good about yourself at every stage. 💬 When should I talk to my doctor? Talk to your IBD team if you're worried about your height, weight, puberty or the way your body is changing. It's especially important if you've stopped growing as expected, are losing weight without trying or haven't started puberty when expected. You don't need to wait until your next appointment if something is worrying you. You could say, "I'm worried that I'm not growing or developing like my friends. Can we talk about it?" Your healthcare team is there to help, and there are ways to support your growth and development. ⭐ Remember Having IBD can sometimes affect how quickly you grow and go through puberty, but it doesn't mean your body can't develop and thrive. With the right treatment, nutrition and support, you can give your body the best chance to grow and become the person you're meant to be. You are more than your height, your weight or your stage of puberty. You're still you, and you're growing in your own 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

Friends & Relationships How to recognise people you can trust Learn how to recognise trustworthy friends and adults, spot warning signs, protect your privacy, and build relationships with people who respect and support you while living with IBD. Living with Crohn’s disease or ulcerative colitis can sometimes feel lonely. You might have questions, worries or difficult days that you don’t want to share with everyone. Having people you can trust makes a big difference, whether you need someone to talk to, help with school or simply a friend who understands. But how do you know who you can trust? Sometimes, it takes time to work that out. Trust isn't just about what someone says — it's also about how they treat you and whether their actions match their words. 💛 What does it mean to trust someone? Trust means feeling safe enough to be yourself around another person. You feel that they will listen to you, treat you with respect and try to understand how you feel. Someone you trust doesn't have to understand everything about IBD. They might not know what a flare feels like or why you're sometimes too tired to hang out. What matters is that they care enough to listen and respect what you tell them. Trust can look different with different people. You might trust one friend with your feelings, another with personal information about your health, and a parent or teacher to help you with bigger worries. 🌟 Signs someone is trustworthy There isn't one perfect way to tell whether someone can be trusted, but there are some helpful signs to look for. They listen to you. They let you talk without making fun of you, interrupting you or immediately telling you what to do. They respect your privacy. If you share something personal about your IBD, they don't spread it around school or tell other people without a good reason. They respect your boundaries. If you say you don't want to talk about your symptoms or need to cancel plans because you're unwell, they don't pressure you or make you feel guilty. They care about how you feel. They notice when you're struggling and check in on you, rather than only thinking about their own needs. They are kind even when nobody is watching. They don't act like your friend in private but embarrass you or make jokes about you in front of others. They keep their promises when they can. They try to do what they say they'll do. If something changes, they are honest with you. They admit when they're wrong. Everyone makes mistakes. A trustworthy person can apologise, take responsibility and try to do better. 🚩 Signs someone might not be safe to trust Sometimes, people seem friendly but don't treat your feelings or privacy with care. Pay attention to how you feel around them and how they behave over time. Be cautious if someone: Shares your private information or tells others about your IBD without your permission. Makes jokes about your symptoms, medication, hospital visits or bathroom needs. Pressures you to tell them things you want to keep private. Makes you feel guilty for being unwell or cancelling plans. Uses personal information to embarrass, threaten or control you. Is kind when they want something but regularly puts you down afterwards. Ignores your boundaries even after you've asked them to stop. One mistake doesn't automatically mean someone can never be trusted again. What matters is whether they recognise the problem, take responsibility and change their behaviour. If someone repeatedly makes you feel unsafe, ashamed or pressured, it's okay to create some distance and talk to a trusted adult. 🧩 How can you work out if someone is trustworthy? You don't have to decide straight away. Trust can grow slowly as you get to know someone. Start with something small. You could share a minor worry or tell them something that isn't too personal. Notice whether they listen and respond kindly. Watch what they do. Someone might promise to keep a secret, but their behaviour over time tells you more than their words alone. Notice how they react when you say no. A trustworthy person might feel disappointed, but they should still respect your decision. Pay attention to how you feel around them. Do you feel accepted and comfortable being yourself, or do you often worry about being judged or embarrassed? Your feelings can give you useful clues. Give yourself time. You don't have to share your biggest worries or most personal information just because someone has been nice to you. Remember, you can change your mind about what you share as you get to know someone better. 🫶 Who can you talk to about your IBD? You might have different people you trust for different reasons. Think about who makes you feel safe, respected and supported. These people could include: A close friend: Someone who listens, respects your privacy and wants you to feel included. A parent or caregiver: Someone who can help you work through worries and make decisions about your health. A teacher or school counsellor: Someone who can help if you're struggling at school, being teased or feeling overwhelmed. A healthcare professional: Someone on your IBD team who can answer questions about your condition and help you find support. Another trusted adult: This could be a relative, coach or family friend who treats you with care and respect. You don't have to tell one person everything. It's okay to have different people supporting different parts of your life. 💬 What if someone breaks your trust? It can really hurt when someone shares something private, makes fun of you or doesn't support you the way you hoped they would. If this happens, remember that someone else's behaviour is not your fault . You were not wrong for wanting to trust someone. You might decide to talk to them about what happened, share less personal information with them in the future or take a break from the friendship. You don't have to forgive someone straight away or pretend everything is fine. If the situation involves bullying, threats, pressure or the sharing of sensitive information, talk to a trusted adult who can help you work out what to do next. And if someone breaks your trust, it doesn't mean nobody else can be trusted. There are people who will treat you with kindness and respect. ❤️ You deserve people who make you feel safe You don't need a huge group of friends to feel supported. Even one or two people who listen, respect your boundaries and accept you as you are can make a real difference. You also don't need to prove that you're trustworthy by sharing private information, keeping secrets that make you uncomfortable or doing things you don't want to do. Trust should grow through kindness, respect and consistent actions. You deserve relationships where you can be yourself, including on the difficult days when IBD makes life feel a little harder. 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 Handling questions from classmates about hospital visits Learn how to handle questions from classmates about hospital visits, decide what to share about your IBD, and set boundaries when questions feel personal or uncomfortable. If you have Crohn’s disease or ulcerative colitis, you might sometimes miss school because you need to go to the hospital for appointments, tests or treatment. When you come back, your classmates might notice you were away and ask where you’ve been. Sometimes, these questions come from genuine curiosity or concern. Other times, they might feel awkward or difficult to answer, especially if you don’t want everyone knowing about your IBD. The most important thing to remember is that you get to choose what you share. You don’t owe anyone a detailed explanation about your health, and it’s okay to keep some things private. 💬 Why do classmates ask questions? Your classmates might ask why you were away because they’re curious, worried about you or simply trying to understand what happened. They might not know much about IBD or why someone your age would need hospital visits. Sometimes, people ask questions without realising they’re personal. They might not understand that talking about medical tests, medication or hospital treatment can feel uncomfortable. Their questions don’t automatically mean they’re being unkind. But even if someone means well, you don’t have to answer anything you don’t feel comfortable sharing. 🗣️ What can you say when someone asks? You can decide how much information you want to give. You might prefer to keep things simple, explain a little about your IBD or share more with a friend you trust. Here are some ideas you can try: If you want to keep it private: “I had a medical appointment.” “I needed to go to the hospital, but I’m okay.” “It’s just something I need to do for my health.” “I’d rather not talk about it, thanks.” If you’re happy to explain a little: “I have IBD, which means my gut sometimes needs extra care.” “I go to the hospital to check how my condition is going.” “I have regular appointments to help keep my IBD under control.” “Sometimes I need treatment to help me feel better.” If a friend wants to know more: “I have Crohn’s disease/ulcerative colitis. It’s a condition that affects my digestive system.” “Sometimes I need tests or treatment, so I have to go to the hospital.” “I don’t mind answering questions, but I might not want to talk about everything.” You don’t have to memorise these answers. Choose words that feel natural to you. 😳 What if someone asks an embarrassing question? Sometimes classmates might ask questions about your symptoms, bowel movements, medication or other personal details. You might feel embarrassed, especially if they ask in front of other people. You can set a boundary without being rude. Try saying: “That’s a bit personal, and I don’t want to talk about it.” “I know you’re curious, but that’s private.” “I’d rather talk about something else.” “You can ask me about IBD, but I don’t want to discuss the details.” You can also change the subject, walk away or talk to a friend who makes you feel comfortable. You don’t need to explain why a question makes you uncomfortable. 🤝 What if people keep asking? If classmates repeatedly ask questions after you’ve told them you don’t want to talk about it, it’s okay to be firmer. You could say, “I’ve already said I don’t want to discuss that. Please stop asking.” If someone keeps bothering you, makes jokes about your hospital visits or shares your private health information with others, speak to a trusted adult. This could be a parent, teacher, school counsellor or another adult you feel safe with. You deserve to have your privacy respected. You shouldn't have to deal with repeated unwanted questions or teasing on your own. ❤️ Do I have to tell everyone about my IBD? No. Your health information belongs to you, and you can choose who knows about your condition. You might want your close friends to understand what you're going through, while keeping the details private from other classmates. You might feel comfortable talking about IBD one day but not another. That's okay, too. There can be benefits to telling people you trust. They may understand why you miss school, need bathroom breaks or sometimes feel unwell. But sharing your diagnosis should be your choice, not something you feel pressured into doing. Remember that some adults at school may need to know certain information to help keep you safe and support your health. A parent or trusted adult can help you work out what needs to be shared and with whom. 🏫 What if I feel awkward coming back to school? Returning to class after a hospital visit can feel strange. You might worry that everyone noticed you were away or wonder what people have been saying. Try to remember that people often move on from these things more quickly than we expect. You don't need to make a big announcement or explain your absence to the whole class. It might help to: Decide in advance what you’ll say if someone asks. Ask a trusted friend to help change the subject if you feel uncomfortable. Talk to a teacher if you’re worried about questions from the class. Give yourself time to settle back into school and catch up on missed work. If you're feeling anxious about returning, let someone you trust know. You don't have to manage those feelings by yourself. 🌟 You’re allowed to have privacy Having IBD can mean dealing with appointments, hospital visits and treatment that other kids your age might not experience. You shouldn't have to explain every part of it to make other people comfortable. You can be honest without sharing everything. You can answer questions, set boundaries or simply say you'd rather not talk about it. Your IBD is one part of your life, not your whole identity. You deserve to feel comfortable at school, spend time with your friends and decide for yourself what you want to share. 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 Dating with Crohn's disease or ulcerative colitis Explore dating with Crohn’s disease or ulcerative colitis, from deciding when to share your diagnosis to managing symptoms and building confidence. Learn how to set boundaries and find relationships where you feel accepted and respected. Dating can feel exciting, confusing, and sometimes a little scary, especially when you have inflammatory bowel disease (IBD). You might have a crush on someone and wonder when to tell them about your condition. Maybe you're worried about having symptoms during a date, needing to use the toilet urgently, or explaining why you sometimes have to cancel plans. You might even wonder whether someone will still like you if they know you have Crohn's disease or ulcerative colitis. If you've had any of these thoughts, you're not alone. Dating can bring up lots of questions, and having IBD can add a few extra things to think about. But here's something important to remember: you deserve to be liked, respected, and cared for exactly as you are. Having IBD doesn't make you less worthy of love or a relationship. 💚 Do I have to tell someone I have IBD? You might wonder whether you need to tell someone about your IBD straight away when you start liking them. The truth is, there is no perfect time to share your diagnosis. It's your personal information, and you get to decide when you're comfortable talking about it. You might choose to tell someone when you start spending more time together, when you feel ready to explain why you sometimes feel unwell, or when you want them to understand something important about your life. You don't have to tell someone everything on the first date, and you don't need to explain every symptom or medical detail. If you decide to share your diagnosis, you could keep it simple: "I have a condition called IBD that affects my digestive system. Sometimes it makes me feel unwell or tired, but I have treatment to help manage it." You can explain more if you want to, but you don't need to give a full medical lesson. Take your time and share what feels right for you. 😟 What if they don't like me because I have IBD? This is a worry that some people with IBD have when they start dating. You might be scared that someone will think your condition is embarrassing, that you're too much work, or that dating you will be difficult. It's understandable to feel nervous about how someone might react when you share something personal. But having IBD doesn't make you less interesting, attractive, funny, kind, or deserving of a relationship. You are a whole person with interests, dreams, friendships, and qualities that have nothing to do with your digestive system. Someone who cares about you should be willing to listen and try to understand your experiences. They don't need to know everything about IBD immediately, but they should treat you with kindness and respect. If someone makes fun of your condition, puts you down, or makes you feel ashamed of being unwell, remember that their behaviour doesn't determine your worth. You shouldn't have to hide an important part of your life just to make someone like you. 🗣️ How do I explain IBD to someone I'm dating? You don't need to use complicated medical words or explain everything at once. You could tell them that IBD is a long-term condition that causes inflammation in your digestive system and that it can affect how you feel from day to day. You might want to explain that: Sometimes you feel well, and sometimes you don't. You might need to use the toilet urgently. Fatigue or pain can occasionally affect your plans. You take medication or attend appointments to manage your condition. You can't always predict when symptoms will happen. You can also explain what helps you feel supported. For example, you might say, "Sometimes I need to change plans if I'm not feeling well. It doesn't mean I don't want to spend time with you." If they have questions, you can answer the ones you're comfortable with. It's okay to say you don't want to discuss something private. You don't have to justify your symptoms or prove how unwell you feel. 🚽 What if I'm worried about symptoms during a date? It's normal to worry about symptoms when you're spending time with someone you like. You might be concerned about needing the toilet, experiencing stomach pain, feeling tired, or having to leave earlier than planned. These worries can feel embarrassing, but you can take steps to help yourself feel more comfortable. Choose a date that suits how you're feeling. You could meet for a movie, visit a familiar café, go for a walk somewhere with toilets nearby, or do an activity you enjoy. Know where the toilets are. If knowing where the nearest toilet is helps you relax, it's okay to check before you arrive. Have a backup plan. You might agree to keep the date flexible or choose somewhere you can leave easily if you start feeling unwell. Remember that you can change your plans. If you're having a difficult symptom day, you can reschedule. You don't need to push through pain or exhaustion to prove that you're interested in someone. Don't be too hard on yourself. If you need to leave a date to use the toilet or because you feel unwell, that doesn't mean you've ruined everything. The right person should understand that your health sometimes needs to come first. 💬 What if I need to cancel a date? Cancelling plans can feel disappointing, especially when you've been looking forward to seeing someone. You might worry that they'll think you're making excuses or that they'll stop asking you out. If you need to cancel, you can explain as much or as little as you feel comfortable sharing. For example: "Hey, I'm really sorry, but I'm not feeling well today because of my IBD. I was looking forward to seeing you. Could we organise another day?" You don't need to provide every detail about your symptoms. If someone is disappointed, that's understandable, but it doesn't mean you've done anything wrong. You can't always control how your body feels. If someone repeatedly makes you feel guilty for being unwell or refuses to respect your health needs, it's worth thinking about whether the relationship feels supportive. 🫂 What does a supportive relationship look like? A healthy relationship should help you feel comfortable being yourself. Someone doesn't need to understand every part of IBD immediately, but they should be willing to learn and respect your boundaries. A supportive person might: Listen when you explain how you're feeling. Understand that you sometimes need to change plans. Avoid making hurtful jokes about your symptoms. Respect your privacy and the information you choose to share. Ask how they can help rather than assuming what you need. Encourage you to look after your health. They should also respect your interests, friendships, opinions, and independence. Remember that a relationship goes both ways. You both deserve kindness, honesty, and respect. You don't have to accept hurtful behaviour because someone is willing to date you. Having IBD doesn't mean you should lower your expectations of how you're treated. 💗 What if I'm embarrassed about my body? IBD and some of its treatments can sometimes affect your weight, skin, hair, or body shape. You might also feel self-conscious about symptoms such as bloating, scars, or needing the toilet frequently. If you're worried about how someone will react to your body, remember that your appearance doesn't determine your value. You don't need to look a certain way to be attractive or worthy of affection. It can take time to feel comfortable sharing personal things with someone, and that's okay. You can decide what you're ready for and move at your own pace. A caring partner should respect your comfort levels and never pressure you to do something you're not ready for. If body image worries are affecting your confidence, talking to someone you trust can help you work through those feelings. 🔐 Remember your boundaries and safety Dating should feel comfortable, respectful, and safe. You never owe someone personal medical information, physical affection, or anything else just because you're dating them. You can say no, change your mind, or decide you're not ready. Someone who respects you should respect those decisions. If you're meeting someone new, especially someone you've only spoken to online, choose a public place, tell a trusted person where you're going, and arrange your own way home if possible. If anyone pressures you, threatens you, shares private information about your health without permission, or makes you feel unsafe, reach out to a trusted adult for help. Your wellbeing matters in every relationship. 🌱 What if I'm not ready to date? That's completely okay, too. You don't need to start dating because your friends are doing it or because you feel like you're supposed to have a boyfriend or girlfriend by a certain age. You can take your time getting to know yourself, building friendships, exploring your interests, and working out what matters to you in a relationship. Having IBD doesn't mean you need to avoid dating, but it also doesn't mean you have to be ready for it right now. There is no deadline for finding someone, and your life doesn't need to look like anyone else's. ⭐ Remember this Dating with Crohn's disease or ulcerative colitis might bring up extra worries, but IBD doesn't stop you from having meaningful relationships. You can choose when to share your diagnosis, set boundaries, plan dates around your needs, and ask for support when you need it. Some people might not understand your condition straight away, and not every relationship will work out. That happens to everyone, whether they have IBD or not. You deserve someone who respects you, listens to you, and makes you feel comfortable being yourself. You are more than your IBD, and you never have to prove that you're worthy of being loved. 💚 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 Learning to say no when you're not feeling well Learn how to say no when you’re not feeling well, set healthy boundaries, and handle disappointment without feeling guilty. Discover ways to protect your energy while maintaining friendships and enjoying the things that matter to you. When you have inflammatory bowel disease (IBD), there might be days when you simply don't have the energy to do everything you want to do. Maybe your friends invite you out, your family has plans, or someone asks you to join an activity at school. You might want to say yes, but your body is telling you that you need to rest. Saying no can feel difficult, especially when you don't want to disappoint anyone or miss out on something fun. You might worry that your friends will think you're boring, your family will be upset, or people will stop inviting you to things. But here's something important to remember: you are allowed to put your health first, even when other people might be disappointed. 💭 Why is saying no so difficult? There are lots of reasons why saying no can feel uncomfortable. You might worry about: Disappointing your friends or family. Missing out on something everyone else is doing. People thinking you're making excuses. Having to explain your symptoms. Feeling left out when everyone talks about what you missed. Being seen as unreliable because you sometimes need to change plans. You might even tell yourself that you should push through because you don't want IBD to stop you from doing things. It's understandable to feel this way. You want to have fun, spend time with people, and enjoy being a kid or teenager. You don't want your health condition to make decisions for you. But ignoring your body's needs doesn't mean you're stronger or braver. Sometimes, recognising when you need a break is one of the best ways to look after yourself. 💚 Listening to what your body needs Living with IBD can mean that your energy levels and symptoms change from day to day. You might feel great one day and exhausted the next. You might have plans you're excited about, only to wake up feeling unwell. Learning to recognise when you need rest can take time. Ask yourself: Am I feeling well enough to do this? Will this activity leave me feeling completely exhausted? Am I saying yes because I genuinely want to, or because I'm afraid of disappointing someone? Could I do a shorter or easier version of the activity instead? You don't need to cancel everything whenever you feel a little tired, and you don't have to avoid activities because you have IBD. The aim is to find a balance between enjoying your life and looking after your health. If you're unsure whether an activity is suitable when you're experiencing symptoms, ask your healthcare team for advice. 🗣️ How to say no without feeling guilty Sometimes, the hardest part of saying no is finding the words. You might feel as though you need a really good excuse or a long explanation to help people understand why you can't do something. But you don't have to justify every decision. Here are a few simple things you could say: "Thanks for inviting me, but I'm not feeling well enough today." "I'd love to come, but I need to rest tonight." "I'm having a rough IBD day, so I need to sit this one out." "I'm sorry, but I need to change my plans. Can we organise another time?" "I can't manage that today, but I'd love to do something quieter instead." You can keep your explanation short. You don't need to share personal details about your symptoms unless you want to. And remember, saying no to one activity doesn't mean saying no to the person. You can still care about your friends and want to spend time with them, even when you can't make it happen that day. 🫂 What if someone gets disappointed? Sometimes, people will be disappointed when you can't join them. Your friends might have been looking forward to seeing you, or your family might have planned something special. It's okay for other people to feel disappointed, but that doesn't automatically mean you've done something wrong. You can acknowledge their feelings without ignoring your own needs. For example, you could say, "I know we were both looking forward to this, and I'm disappointed too. I'm just not feeling well enough today." You don't have to make yourself feel worse by apologising over and over or promising to do something you're not sure you'll manage. If someone cares about you, they should want you to look after yourself, even if they're disappointed that plans have changed. If someone regularly makes you feel guilty, pressures you to ignore your symptoms, or gets angry when you need to rest, it's worth talking to someone you trust about what's happening. 🌱 You don't always have to say no completely Sometimes, there's a middle ground between doing everything and doing nothing. If you're not feeling your best but still want to be involved, you could try changing the plan to make it more manageable. For example: Go to a party for an hour instead of staying all night. Meet a friend somewhere close to home. Choose a quieter activity instead of something physically demanding. Join your friends online if you don't feel well enough to go out. Ask whether you can decide closer to the time, if the plans allow it. Take breaks during an activity instead of pushing through exhaustion. You can also suggest another day when you're feeling better. Of course, there will be times when resting completely is what you need. You don't have to find a compromise every time. The important thing is that you have choices, and you can make decisions based on how you're feeling rather than what you think other people expect from you. 😟 What if people think I'm making excuses? One of the hardest things about having an invisible illness is that people can't always see when you're struggling. You might look fine, even when you're dealing with pain, fatigue, or other symptoms. Someone who doesn't understand IBD might assume you're exaggerating or simply don't want to join in. That can feel frustrating and hurtful. If you feel comfortable, you could explain that IBD symptoms aren't always visible and that your energy and health can change unexpectedly. You might say, "I know I look okay, but I don't always feel okay. Sometimes I need to rest even when it isn't obvious that I'm unwell." You don't need to convince everyone to understand your condition. You know how you're feeling, and your symptoms deserve to be taken seriously. If someone continues to dismiss your health needs, remember that their misunderstanding doesn't mean your decision was wrong. 🩷 Saying no doesn't make you a bad friend You might worry that if you cancel plans too often, your friends will stop inviting you. It's understandable to want to be included. Friendships are important, and missing out can feel lonely. When you're able to, try letting your friends know that you still want to spend time with them, even when your health sometimes gets in the way. You could say, "I might not always be able to come, but please keep inviting me. I still want to be included." You can also suggest activities that are easier to manage or arrange another time to catch up. Good friendships allow room for people to have different needs. You shouldn't have to be available every time to prove that you care about someone. And if a friend struggles to understand at first, a conversation might help them learn more about your situation. ⭐ Remember this Learning to say no takes practice, especially when you want to make other people happy. But you don't have to ignore your symptoms, push through exhaustion, or feel guilty every time you need to rest. You can care about your friends and family while still making choices that protect your wellbeing. You can be disappointed about missing out without blaming yourself. And you can change your mind when your body needs something different. Saying no doesn't mean you're giving up. Sometimes, it means you're listening to your body and giving yourself the care you deserve. 💚 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 When you feel guilty about the impact of IBD on your family Living with IBD can sometimes leave you feeling guilty about the impact on your family, from cancelled plans to extra worry and responsibilities. Learn why these feelings happen, how to stop blaming yourself, and how to remember that you deserve love and support without feeling guilty. Living with inflammatory bowel disease (IBD) can affect more than just your body. It can also affect your family, your routines, and the things you do together. Maybe your parents have to take time off work to take you to appointments. Perhaps your family has cancelled a holiday because you were unwell, or your siblings have missed out on something because plans had to change. You might notice your parents looking worried, feel bad when someone has to help you, or wonder whether life would be easier for everyone if you didn't have IBD. If you've ever had thoughts like these, you are not alone. It can be hard to see the people you love dealing with extra challenges because of your condition. But there's something important you need to remember: you did not choose to have IBD, and you are not responsible for the difficulties it brings to your family. 💭 Why do I feel guilty? Guilt is a feeling that can show up when you worry that you've done something wrong or caused a problem for someone else. When you have IBD, you might feel guilty about things you cannot control. You might think: "My parents have to spend so much time looking after me." "My family can't do the things they want because of my IBD." "My brother or sister misses out because everyone is worried about me." "I hate making everyone worry." "I wish I could just be normal so things would be easier." These thoughts can feel very real, especially when you see your family making sacrifices or changing their plans. But having a health condition is not something you have done wrong. Needing help, missing activities, or having difficult days doesn't make you a burden. Your family might have extra responsibilities because of IBD, but that doesn't mean you are to blame for them. 💚 You are not a burden When people love you, they want to help you when things are difficult. Your parents or carers might spend time taking you to appointments, helping with medication, talking to your school, or looking after you when you're unwell. Sometimes, you might wish you didn't need so much help. But needing care doesn't make you a burden. Think about how you would feel if someone you loved was unwell. Would you want them to feel guilty every time you helped them? Or would you want them to know that they mattered to you and deserved care? You deserve that same kindness. You don't have to earn your family's love by being healthy, doing well at school, or never needing help. You deserve love and support on the difficult days, too. You are a member of your family, not a problem your family has to solve. 🫂 When you worry about your parents Sometimes, seeing your parents worry about your health can be harder than dealing with your own feelings. You might notice them looking tired, worrying about test results, or feeling stressed when your symptoms get worse. You may even try to hide how you're feeling because you don't want to worry them more. It's understandable to want to protect the people you love. But you don't have to hide your feelings or pretend you're okay to make things easier for your parents. Your parents and carers are responsible for looking after you, and that includes helping you when you're unwell or struggling emotionally. They might have difficult days, too, but those feelings are not your fault. If you're worried about them, you could try saying something like: "I'm worried that my IBD is making things difficult for everyone. Sometimes I feel guilty about it, even though I know I can't help being unwell." Talking about these feelings might help your family understand what you're going through. You may discover that they want you to worry less about the impact on them and focus more on looking after yourself. 👨👩👧👦 What about my brothers and sisters? If you have siblings, you might sometimes feel guilty when they miss out because of your IBD. Maybe a family outing gets cancelled, your parents have to spend extra time helping you, or your brother or sister has to wait while you attend an appointment. You might worry that they're getting less attention or that your condition is making life unfair for them. These feelings can be difficult, especially when you love your siblings and want them to be happy. But family life can be complicated for lots of reasons, and it's not your job to make sure everyone always gets exactly the same amount of time or attention. Your parents can help your family find ways to support everyone's needs. You don't have to solve everything yourself. If you're close to your sibling, you might want to talk to them about how you feel. Sometimes, simply explaining what's on your mind can help you understand each other better. And remember, you and your siblings can still have fun together, make memories, and enjoy time as a family, even when IBD means some things need to change. 🌧️ When IBD changes family plans It can be disappointing when your family has to cancel or change something because you're unwell. Perhaps you've missed a birthday celebration, a holiday, a day trip, or an activity everyone was looking forward to. You might feel responsible, even when you know you couldn't control what happened. It's okay to feel disappointed about missing out. It's also okay to feel sad when your family has to change its plans. But try to separate what happened from what you blame yourself for. You didn't choose your symptoms. You didn't decide to have a flare. And you didn't deliberately ruin anyone's plans. Sometimes, bodies don't cooperate, and families have to adapt. When you're feeling better, you might be able to find another way to enjoy the activity or make a new plan together. Sometimes, you won't be able to recreate the original experience, and that's disappointing, too. You don't need to turn every difficult situation into something positive. It's enough to recognise that something was hard and give yourself permission to feel upset without blaming yourself. 🗣️ How to talk to your family about feeling guilty Talking about guilt can feel awkward. You might worry that your family will become upset or that you won't know how to explain what you're feeling. You don't need to have all the answers before starting the conversation. You could try saying: "Sometimes I feel bad about how much time you spend looking after me." "I worry that my IBD makes life harder for everyone." "I feel guilty when we have to cancel plans because I'm unwell." "I know I can't control my IBD, but I still feel bad sometimes." "I don't need you to fix anything right now. I just want to talk about how I'm feeling." If speaking feels too difficult, you could write a message or letter instead. You might also find it helpful to talk to someone outside your family, such as your IBD nurse, a school counsellor, or a psychologist. Sometimes, talking to someone who isn't directly involved can help you make sense of your feelings without worrying about upsetting anyone. 🌱 What can I do when guilt shows up? You might not be able to stop guilty feelings from appearing, but you can learn ways to respond to them. Remind yourself what is and isn't your responsibility. You are responsible for treating people with kindness, but you are not responsible for preventing every inconvenience or disappointment caused by your illness. Notice when you're blaming yourself. If you think, "I've ruined everything," try changing it to, "My IBD meant our plans had to change, and that's disappointing, but it wasn't my fault." Let other people help you. You don't have to refuse support to prove that you're not a burden. Accepting help is a normal part of living with a health condition. Find small ways to connect with your family. You might play a game together, watch a film, chat about your day, or spend time doing something everyone enjoys. You don't need to organise something special or make up for needing care. Be kind to yourself. You would probably comfort a friend who felt guilty about being unwell. Try to offer yourself the same understanding. You don't need to do all these things at once. Start with whatever feels manageable. 🧡 You can care about your family without carrying everyone's worries It's natural to care about how your IBD affects the people you love. You might want to help your parents feel less stressed or wish you could make things easier for your siblings. Those feelings show that you care about your family. But caring about someone doesn't mean you have to take responsibility for their emotions or solve every difficulty they face. Your family can have their own feelings, ask for support, and work through challenges together. You are allowed to be a child or teenager who needs care, not someone who has to make everything okay for everyone else. You can contribute to family life in ways that suit your age and how you're feeling, but you don't have to compensate for being unwell. And if guilt is making you hide your symptoms, avoid asking for help, or feel like you don't deserve support, please tell someone you trust. You deserve help with those feelings, too. ⭐ Remember this IBD can affect the whole family, and it's understandable to feel sad or guilty when you see people you love dealing with extra challenges. But you did not cause your IBD, and you are not responsible for making up for it. You deserve care when you're unwell, patience when things are difficult, and time to enjoy being a kid or teenager without feeling guilty. Your family may have to make changes because of IBD, but those changes don't make you a burden. You are loved for who you are, not for how easy or difficult life happens to be. You don't have to be healthy all the time, make everyone happy, or pretend you're fine to deserve that love. You are allowed to need help. You are allowed to have difficult days. And you are allowed to be cared for without feeling guilty. 💚 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 your body changes because of IBD or medication Learn how IBD and its medications can affect your weight, skin, hair, growth, and body shape, and discover ways to cope with body image worries. Growing up means your body will change in lots of different ways. But when you have inflammatory bowel disease (IBD), you might notice changes that feel confusing, frustrating, or different from what your friends are experiencing. Maybe your weight has changed, your face looks different, you have more spots, or your body doesn't seem to be growing as quickly as you expected. Perhaps you've noticed stretch marks, changes in your hair, or other effects from your medication. These changes can sometimes make you feel uncomfortable in your own skin. You might compare yourself to your friends, worry about what other people think, or wonder whether your body will ever feel like yours again. If this sounds familiar, you're not alone. Let's talk about why these changes can happen, what you can do about them, and how to feel more comfortable with your body. 💭 Why is my body changing? There are lots of reasons your body might change when you have IBD. Some changes happen because you're growing and going through puberty. Others may be connected to IBD itself, how well your body is absorbing nutrients, inflammation, changes in your appetite, or the medication you take. For example, you might notice: Changes in your weight or body shape. Feeling smaller or shorter than some of your friends. Changes in your skin, including spots or stretch marks. Changes in your hair. Puffiness or swelling in your face. Changes in your energy levels or muscle strength. Puberty starting later than you expected. Not everyone with IBD experiences these changes, and everyone's body develops at a different pace. If you notice something new or something that worries you, tell your parent or carer, doctor, or IBD nurse. They can help you understand what's happening and whether anything needs to be checked. Your body isn't doing anything wrong by changing. It's responding to lots of different things, and you deserve support while you work out what those changes mean for you. 💊 How can IBD medication affect my body? Some medications used to treat IBD can cause changes in how your body looks or feels. For example, corticosteroids such as prednisolone can sometimes cause an increase in appetite, weight gain, a rounder-looking face, acne, or stretch marks. They can also affect growth, particularly when used for longer periods. Other medicines can have different side effects, and many do not cause noticeable changes in appearance at all. If you've noticed a change since starting a medication, it can be helpful to tell your healthcare team. They can explain whether it could be a side effect and what options might be available. It is important to remember that medications are prescribed to help manage your IBD, and controlling inflammation can also help your body grow and develop. Never stop taking your medication or change your dose on your own because of changes to your appearance. If something is bothering you, talk to your healthcare team. They can help you weigh up the benefits of treatment and any side effects you're experiencing. 🪞 When you don't recognise your reflection Sometimes, changes to your appearance can affect how you feel about yourself. You might look in the mirror and notice something you wish were different. Maybe your face looks puffier than before, your clothes fit differently, or your skin has changed. You might feel frustrated because you didn't choose these changes. You might also feel embarrassed if other people comment on them. It's okay to have these feelings. You don't have to pretend to love every part of your appearance all the time. But try to remember that your appearance is only one small part of who you are. You are still the person who makes your friends laugh, enjoys your favourite hobbies, cares about other people, and has dreams for the future. If looking in the mirror or comparing photos is making you feel worse, try taking a break from doing it so often. Focus on activities that help you feel comfortable and confident in other ways. You don't have to love every change your body goes through to treat yourself with kindness. 📏 When your body grows differently from your friends It can be difficult when your friends seem to be growing faster than you. Maybe they've suddenly become taller, their bodies have changed, or they've started puberty before you. You might wonder why you're different or worry that you're falling behind. IBD can sometimes affect growth and puberty, especially when inflammation is not well controlled or your body isn't getting enough nutrients. Some young people with IBD grow more slowly or start puberty later than their friends. This doesn't necessarily mean they won't catch up, but it's important for your healthcare team to monitor your growth and development. At your appointments, your doctor may check your height, weight and growth pattern over time. If they have concerns, they can look into possible reasons and discuss what support might help. Try not to judge your progress by comparing yourself with someone else's body. People grow at different times, even without IBD. If you're worried that you're not growing or developing as expected, tell your doctor. You deserve answers rather than having to worry about it on your own. 💬 What if people comment on my appearance? Comments about your body can feel uncomfortable, even when someone doesn't mean to hurt you. Someone might ask why your face looks different, comment on your weight, or tell you that you've changed. They might not realise that your appearance is connected to your health or medication. You don't owe anyone a detailed explanation of your medical history. If you want to respond, you could say: "My medication can sometimes change how my body looks." "I'm dealing with some health stuff, and I'd rather not talk about my appearance." "I'm not comfortable with comments about my body." "Everyone's body changes differently, and I'd prefer you didn't comment on mine." You can also change the subject or walk away if you don't want to discuss it. If people repeatedly make hurtful comments, tease you, or make you feel ashamed of your body, talk to someone you trust. You deserve to be treated with respect. 💚 Taking care of your body without trying to change it When your body changes in ways you don't like, it can be tempting to try to change it back as quickly as possible. You might want to lose weight, skip meals, exercise more than usual, or follow advice you've seen online. But when you have IBD, your body needs enough nourishment, rest and support to grow, heal and manage inflammation. Instead of focusing on changing your appearance, try to focus on looking after yourself. Eat regularly. Your body needs energy and nutrients, especially while you're growing. If eating is difficult or you're worried about your weight, ask your healthcare team or dietitian for help. Rest when you need to. Feeling tired doesn't mean you're lazy. Your body may need extra rest when you're unwell. Move in ways you enjoy. Walking, swimming, dancing, playing sport or stretching can help you feel good, depending on how you're feeling. Wear clothes that feel comfortable. You deserve to feel comfortable in your clothes, whatever your body looks like today. Be careful with advice online. Diets, supplements and products that promise to change your body may not be safe or suitable for someone with IBD. You don't need to earn food, punish yourself for gaining weight, or push through symptoms to prove anything. If you want to make changes to your eating or activity, speak to your healthcare team first so they can help you find an approach that supports your health and growth. 🫂 When body changes affect how you feel Sometimes, the hardest part of a body change isn't the change itself. It's how it makes you feel. You might avoid photos, feel uncomfortable changing for sport, compare yourself with people on social media, or worry that other people will notice your appearance. If this is happening, try talking to someone you trust. This could be a parent or carer, your IBD nurse, a doctor, a school counsellor or a psychologist. You don't have to wait until you're really struggling before asking for help. You can also try following people online who show a realistic range of bodies and experiences, rather than accounts that make you feel you need to look a certain way. And remember, you don't have to feel confident every day. Learning to feel comfortable with your body can take time, particularly when it changes in ways you didn't expect. 🌱 Your body is more than how it looks It can be easy to focus on the parts of your body you wish were different, especially when IBD or medication changes your appearance. But your body does so much more than look a certain way. It carries you through your day, lets you hug people you love, helps you explore the world, and gives you the chance to do things that matter to you. You don't have to love every change or feel positive all the time. You can feel frustrated about your appearance and still recognise that your body deserves care and respect. Your body may look different at different stages of your life. That doesn't make you less worthy, less attractive, or less deserving of friendship. You are not defined by your weight, height, skin, hair, or the side effects of your medication. ⭐ Remember this IBD and its treatments can sometimes change how your body looks, feels, grows and develops. If those changes are upsetting or worrying you, you don't have to deal with them alone. Talk to your healthcare team about changes you're noticing, and ask questions if you're unsure whether something is related to your IBD or medication. Give yourself time to adjust, be kind to yourself on difficult days, and remember that your body deserves nourishment, rest and care. You don't have to look a certain way to be healthy, valuable, or enough. You are more than your IBD, and you deserve to feel comfortable being yourself. 💚 This article is for general information and educational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment. If you notice changes in your body or are concerned about medication side effects, speak to your parent or carer and healthcare team. Never stop or change your medication without medical advice. 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