When should I call the IBD team?

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.