Supporting Your Child on Difficult IBD Days

Living with Crohn’s disease or ulcerative colitis can be challenging for children, even when their condition is usually well managed. Some days, your child might feel exhausted, frustrated, worried or overwhelmed by symptoms, appointments, medication or the feeling of being different from their friends.

As a parent, it can be difficult to know what to say or do. You might want to fix the problem, cheer them up or reassure them that everything will be okay. Sometimes, though, what your child needs most is to feel understood, supported and safe to express how they feel.

There is no perfect way to parent a child through IBD. What matters is helping them feel that they do not have to face the difficult days alone.

🌧️ Recognising when your child is having a difficult day

Not every difficult day looks the same. Your child might tell you directly that they are struggling, or you might notice changes in their behaviour.

They may:

• Become quieter, more withdrawn or unusually irritable.

• Get upset over things that would not normally bother them.

• Feel frustrated about missing school, sport or time with friends.

• Worry about pain, needing the toilet or having an accident.

• Feel angry about taking medication or attending appointments.

• Struggle with tiredness, concentration or motivation.

• Compare themselves with other children and feel that life is unfair.

Sometimes, these changes may be related to physical symptoms, poor sleep or active inflammation. At other times, your child may be dealing with emotions that have built up over several days or weeks.

Try not to assume that every change in mood is simply part of having IBD. Ask gentle questions, listen to what your child says and consider whether their symptoms or treatment need reviewing.

👂 Listen before trying to fix things

When your child is upset, it is natural to want to make the situation better straight away. You might offer solutions, remind them how strong they are or explain why things could be worse.

Although these responses come from a place of love, your child may first need the opportunity to talk without being interrupted or reassured too quickly.

You could try saying:

• “It sounds like today has been really hard.”

• “You don't have to pretend you're okay with me.”

• “Do you want to tell me what's bothering you?”

• “Would you like me to listen, or would you like help working out what to do?”

• “It's okay to feel angry or upset about having IBD.”

You do not need to have the perfect words. Giving your child your attention and showing that their feelings matter can be more helpful than trying to find an immediate solution.

If they do not want to talk, let them know you are available when they are ready.

❤️ Validate their feelings without trying to make them positive

Children with IBD may experience feelings that are difficult to talk about, including anger, embarrassment, jealousy, sadness and frustration.

They might wonder why they have to deal with a chronic illness when their friends do not. They may feel guilty about missing family activities or worry that their illness is making life harder for everyone.

Rather than trying to turn every negative feeling into a positive one, acknowledge what your child is experiencing.

For example:

If they say, “It's not fair that I have IBD.”

You could respond, “You're right. It isn't fair that you have to deal with this. I wish things were easier for you, too.”

If they say, “I'm sick of being different.”

You could say, “I understand why you feel that way. Having IBD can make you feel different sometimes, and that can be really hard.”

If they say, “Nobody understands.”

You might respond, “It can feel lonely when people haven't experienced what you're going through. I'm here to listen, and we can work out how to help other people understand, too.”

You do not have to agree with every thought your child expresses to validate their feelings. You are showing them that their emotions are understandable and that they do not need to hide them from you.

🛋️ Make difficult days a little easier

When your child is struggling, small adjustments can make the day feel more manageable.

Depending on how they are feeling, you might:

• Reduce expectations around chores, homework or other responsibilities.

• Allow extra rest without making your child feel lazy or guilty.

• Offer quiet activities, such as reading, drawing, listening to music or watching a favourite film.

• Make sure they have easy access to the toilet, comfortable clothing and anything they need to manage symptoms.

• Offer familiar foods and drinks that they can comfortably tolerate.

• Keep plans flexible if symptoms or fatigue make activities difficult.

• Spend time together without expecting your child to talk about their illness.

You do not need to turn every difficult day into a special event. Sometimes, a quiet afternoon together or a little extra understanding is enough.

At the same time, try to maintain normal routines where your child feels able to participate. The goal is to respond to their needs without making illness the centre of every family interaction.

🧠 Help your child manage overwhelming emotions

Children may not always have the words to explain what they are feeling. They might express distress through anger, tears, withdrawal or refusing to do something.

Rather than focusing only on the behaviour, try to understand what might be underneath it.

You could ask, “Is something worrying you, or are you feeling uncomfortable or exhausted today?”

Simple strategies may help your child feel more in control:

• Name the feeling: Help them identify whether they feel worried, frustrated, embarrassed, sad or overwhelmed.

• Break things into smaller steps: If the day feels too much, focus on what needs to happen next rather than the whole day.

• Offer choices: Let them decide between two manageable options, such as resting with a book or watching a film.

• Try a calming activity: Slow breathing, gentle movement, music or a quiet space may help when emotions feel intense.

• Remind them that feelings change: They do not need to solve everything while they are upset.

These strategies will not remove the challenges of IBD, but they can help children develop ways to cope with difficult moments.

🏫 When IBD makes everyday life harder

Sometimes, your child's difficult day may be connected to something specific, such as missing a school activity, worrying about a flare or feeling embarrassed about needing the toilet.

Try to understand what is making the situation difficult before deciding what support they need.

For example, if your child is upset about missing a birthday party, acknowledge their disappointment rather than immediately suggesting another activity.

If they are worried about returning to school after an absence, talk through what might help them feel more comfortable. This could include arranging a catch-up plan with teachers, identifying a trusted adult at school or making sure they can access a toilet when needed.

If your child feels embarrassed about their symptoms, reassure them that IBD is a medical condition and that they have nothing to be ashamed of.

Where possible, involve your child in decisions about the support they receive. Having some control over what happens can help them feel more confident and less overwhelmed.

🤝 When your child pushes you away

Children sometimes direct their frustration towards the people they feel safest with. Your child might snap at you, refuse help or insist that you leave them alone.

This can be upsetting, especially when you are trying hard to support them.

If it is safe to do so, give them some space while making it clear that you are still available.

You could say, “I can see you need some time to yourself. I'll give you some space, and I'm here if you need me.”

You can also set reasonable boundaries around how family members speak to one another without dismissing the feelings behind the behaviour.

For example, “It's okay to be angry, but it's not okay to hurt someone with your words. Let's take a break and talk when we're both calmer.”

If your child's distress is frequent, intense or affecting family life, consider seeking additional support rather than assuming it is something you simply need to manage at home.

🌱 Encourage independence without expecting too much

As children grow, they gradually learn to recognise their symptoms, communicate their needs and take part in decisions about their care.

On difficult days, they may need more support than usual. That does not mean they are going backwards or failing to become independent.

You can support their developing independence by asking what they think would help, offering choices and involving them in practical decisions when appropriate.

For younger children, this might mean choosing a quiet activity or telling you when they need help.

For older children and teenagers, it might involve explaining their needs to a teacher, preparing questions for an appointment or deciding how much they want to tell their friends about IBD.

Allowing your child to take manageable steps towards independence can help them develop confidence while knowing that support is still available.

🩺 Know when your child needs extra support

Emotional distress is understandable when a child is living with a chronic illness, but ongoing difficulties deserve attention.

Consider speaking with your child's IBD team or another appropriate healthcare professional if you notice:

• Persistent sadness, anxiety or irritability.

• Increasing withdrawal from friends, family or activities they previously enjoyed.

• Frequent worries about symptoms, accidents or leaving home.

• Significant changes in sleep, appetite or behaviour.

• Refusal to attend school because of distress.

• Difficulty coping with treatment, appointments or the impact of IBD on daily life.

A psychologist or counsellor experienced in working with children and chronic illness may be able to help your child develop coping strategies and process difficult emotions.

It is also important to check whether physical symptoms are contributing to how they feel. Pain, fatigue, poor sleep, nutritional deficiencies and active inflammation can all affect wellbeing.

If your child talks about wanting to hurt themselves or not wanting to be alive, take this seriously and seek urgent professional help.

💚 Remember to look after yourself, too

Supporting a child with IBD can be emotionally demanding. You may be managing appointments, medications, school concerns and the uncertainty of not knowing when the next difficult day will come.

You might feel worried, exhausted, helpless or frustrated, even when you are doing everything you can to help your child.

Those feelings do not make you a bad parent.

Try to give yourself the same understanding you offer your child. Talk to someone you trust, seek support from other families living with IBD or ask your child's healthcare team about resources for parents and carers.

You do not have to be endlessly patient or always know what to say. Repairing a difficult moment, apologising when needed and showing up again are all part of supporting your child.

❤️ What to remember on the difficult days

You cannot take away every painful, frustrating or unfair part of living with IBD. But you can help your child know that their feelings are welcome, their needs matter and they do not have to face the hard days alone.

Some days, support will mean helping them solve a problem. Other days, it will mean listening, offering a hug, making things a little easier or simply sitting beside them.

Your child does not need you to make every day okay. They need to know that when a day is not okay, they can turn to you.

Sometimes, the most powerful thing you can say is, “I know today is hard. You don't have to get through it on your own.”

📚 Further reading

• Crohn’s & Colitis Foundation — Resources for families navigating the emotional and practical challenges of IBD.

• Crohn’s & Colitis UK — Information and support for people living with Crohn’s disease and ulcerative colitis.

• Crohn’s & Colitis Canada — Resources for individuals and families affected by IBD.

• International Foundation for Gastrointestinal Disorders (IFFGD) — Information about digestive disorders and their impact on daily life.