Worrying about IBD

Living with Crohn’s disease or ulcerative colitis can bring up lots of different feelings. Sometimes you might feel happy and well, and other times you might feel worried, scared, frustrated or overwhelmed.

You might worry about having a flare, needing the toilet at school, taking medicine or missing out on things your friends are doing. You might even worry about what will happen in the future.

If you feel this way, you're not alone. Worry is a normal part of living with IBD, and you don't have to deal with it all by yourself.

Let's look at some common worries and things you can try to help you feel calmer and more in control.

🧠 Why do I worry so much?

When you have IBD, there can be lots of things to think about. You might not always know when your tummy will hurt, when you'll need the toilet or whether you'll feel well enough to do something fun.

Sometimes, your brain tries to protect you by thinking about all the things that might go wrong. It can feel like your mind won't switch off, even when everything is okay.

You might notice that you:

• Keep thinking about your symptoms.

• Worry about getting sick when you're away from home.

• Feel nervous before school, sport or social events.

• Find it hard to fall asleep because you're thinking about tomorrow.

• Ask lots of questions because you want to know everything will be okay.

These feelings can be tiring, especially when you're already dealing with a health condition.

Remember, worrying doesn't mean you're doing anything wrong. It means something is bothering you, and you deserve help with it.

🚽 What if I need the toilet when I'm out?

One common worry for kids with IBD is needing the toilet urgently when they're away from home.

You might worry about being in class, visiting a friend's house, going shopping or being somewhere you don't know.

A little planning can help you feel more confident.

• Know where the toilets are. When you arrive somewhere new, find out where the nearest toilet is.

• Have a backup plan. Keep spare underwear, wipes or anything else you might need in your bag.

• Tell someone you trust. A parent, teacher or friend can help if you feel worried.

• Remind yourself that it's okay to go. You don't need to wait for permission when you urgently need the toilet.

You can't control everything your body does, but you can make a plan for what to do if something unexpected happens.

And remember, needing the toilet is nothing to be ashamed of.

🔄 What if I have another flare?

When you've experienced a flare before, it can be scary to think about going through it again.

You might notice every little tummy ache or change in how you feel and wonder whether your IBD is getting worse.

It's understandable to feel worried, especially if a previous flare was difficult.

Here are some things that might help:

• Notice your feelings without jumping to conclusions. A tummy ache doesn't automatically mean you're having a flare.

• Talk to an adult. Tell your parent or carer what you're noticing and what you're worried about.

• Follow your care plan. If you have symptoms that concern you, ask your parent or carer to contact your IBD team.

• Focus on what you know right now. Try not to let worries about what might happen take over your whole day.

You don't have to figure out whether you're having a flare by yourself. Your family and medical team can help you work out what's happening.

🏫 What if something embarrassing happens at school?

You might worry about having an accident, needing to leave class suddenly or having your classmates ask questions about your IBD.

These worries can make school feel stressful, even on days when you're feeling well.

One helpful thing you can do is make a plan with your parent or carer and school.

You could arrange a toilet pass, identify a trusted teacher and keep spare clothes somewhere safe.

It can also help to think about what you would say if someone asked a question.

For example:

• “I have a health condition that sometimes means I need the toilet quickly.”

• “I'm not feeling well, so I need to take a break.”

• “I'd rather not talk about that.”

You don't owe everyone an explanation about your health.

Having a plan doesn't mean something embarrassing will happen. It simply means you'll know what to do if you need help.

🌬️ How can I calm my mind when I feel worried?

When you're worried, your thoughts can sometimes feel really big. You might feel restless, have butterflies in your tummy or find it difficult to concentrate.

Here are a few things you can try when your worries start to build.

🌬️ Try slow breathing

Find somewhere comfortable to sit. Breathe in gently through your nose, then breathe out slowly.

Repeat a few times without forcing your breath. Let your shoulders relax as you breathe out.

You don't need to make every worry disappear. Just give yourself a moment to slow down.

🖐️ Use your five senses

If your mind is racing, try bringing your attention back to what's around you.

• Name five things you can see.

• Notice four things you can feel.

• Listen for three things you can hear.

• Notice two things you can smell.

• Name one thing you can taste.

This can help bring your attention back to the present moment instead of getting caught up in worrying about what might happen.

✏️ Write your worries down

Sometimes, worries feel bigger when you keep them all inside your head.

Try writing down what's bothering you. You could use a notebook, draw a picture or tell someone about it.

Then ask yourself: “Is there something I can do about this right now?”

If there is, think of one small step you can take. If there isn't, try reminding yourself that you don't have to solve everything today.

🎨 Do something you enjoy

Listen to music, draw, read a book, play with your pet or spend time with a friend.

Doing something enjoyable won't always make your worries disappear, but it can give your brain a break.

You are allowed to have fun, even when you're worried about your health.

💭 What if I can't stop thinking about my IBD?

Sometimes, worries keep coming back even when you try to distract yourself.

You might find yourself checking how your tummy feels over and over, imagining the worst or asking the same questions because you need reassurance.

When this happens, try to be kind to yourself.

You could say to yourself:

• “It's okay that I'm feeling worried.”

• “I don't have to work everything out right now.”

• “I can ask for help if I need it.”

• “I'm allowed to enjoy today, even if I can't predict what will happen tomorrow.”

You don't have to pretend you aren't worried. The goal isn't to never feel anxious. It's to learn ways to handle those feelings so they don't take over everything you do.

If your worries keep coming back or stop you from doing things you enjoy, it's okay to ask for extra support.

💬 How do I tell someone I'm worried?

Sometimes, talking about your worries can feel harder than keeping them to yourself.

You might not want to upset your parents, or you might think other people won't understand what you're going through.

But you deserve to be listened to.

You could start by talking to:

• A parent or carer.

• A trusted teacher or school counsellor.

• Your IBD nurse or doctor.

• Another adult who makes you feel safe.

You don't need to know exactly what to say. You could simply tell them, “I've been worrying a lot about my IBD, and I don't really know how to deal with it.”

If talking feels difficult, you could write your feelings down or send a message instead.

Your IBD team can also help you find someone who understands the emotional side of living with a long-term health condition.

❤️ When should I ask for extra support?

Everyone worries sometimes, but you shouldn't have to feel worried all the time.

It's a good idea to tell a trusted adult if:

• You worry so much that it's hard to enjoy things.

• You avoid school, sport or seeing friends because you're scared.

• You have trouble sleeping because of your worries.

• You feel upset, overwhelmed or frightened most days.

• You keep your feelings to yourself because you don't know how to explain them.

A counsellor or psychologist can teach you ways to manage anxiety and cope with the challenges of living with IBD. Getting help doesn't mean you're weak. It means you're taking care of your emotional health, too.

If your worries are about new or worsening physical symptoms, tell your parent or carer so they can help you get appropriate medical advice.

🌈 Remember, you don't have to face your worries alone

Living with IBD can sometimes feel unpredictable, and it's okay to have days when you're scared, frustrated or fed up.

You don't have to be brave every minute of every day. You don't have to hide your feelings or pretend everything is fine.

Talk to someone you trust, make a plan for the things that worry you and give yourself permission to enjoy the good moments.

Your IBD is one part of your life, but it isn't your whole life. You deserve to laugh, play, make friends, try new things and look forward to the future.

One worry at a time. One day at a time. You've got this. 💙