What to ask at your child's gastro appointment | IBD checklist

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.