Medication questions to ask your IBD team

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.

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.