Understanding your child’s IBD medications

When your child is diagnosed with IBD, one of the biggest adjustments can be learning about their medications.

You may suddenly hear words like:

Aminosalicylates. Steroids. Immunomodulators. Biologics. Biosimilars. Induction. Maintenance.

It can feel like learning a completely new language.

And then there are the practical questions:

What does this medication actually do?

How long will my child need it?

What are the side effects?

Why are there so many different treatments?

What happens if it doesn’t work?

Understanding the basics can make IBD treatment feel much less overwhelming.

Your child’s gastroenterologist and IBD team will choose treatment based on your child’s individual circumstances, including whether they have Crohn’s disease or ulcerative colitis, how active the inflammation is, where the inflammation is located, their age, growth, other health factors and how they respond to treatment.

🌍 Medication availability varies between countries

One important thing to know is that IBD medications are not necessarily available, approved or prescribed in the same way in every country.

Medication names, formulations, approved ages, treatment guidelines, prescribing rules, funding and access can all vary depending on where you live.

This guide focuses on the general types of IBD medications used in children. Your child’s local IBD team will recommend treatments that are appropriate for their age, condition and healthcare system.

💊 Why does my child need IBD medication?

IBD causes ongoing inflammation in the digestive tract.

Treatment aims to control that inflammation and help your child feel well.

Depending on the medication, treatment may be used to:

• Bring an active flare under control

• Reduce inflammation

• Help symptoms improve

• Achieve remission

• Maintain remission

• Prevent future flares

• Support healthy growth and development

• Heal inflammation in the bowel

An important thing to understand is that feeling better doesn’t always mean the inflammation has completely gone.

Your child’s IBD team may use symptoms, blood tests, stool tests such as faecal calprotectin, imaging or endoscopy to assess how well treatment is working.

🔥 Induction treatment: calming a flare

When your child’s IBD is active, their doctor may prescribe treatment designed to bring the inflammation under control.

This is sometimes called induction treatment.

The aim is to get the disease into remission.

The medication used for induction depends on the type and severity of IBD and your child’s individual circumstances. Treatment options can also vary between countries.

Some children may need a short course of steroids.

Others may start or change to another treatment designed to control inflammation more effectively.

🌿 Maintenance treatment: staying well

Once your child’s IBD is under control, they may continue treatment to help maintain remission.

This is called maintenance treatment.

Maintenance medication is important because IBD can become active again even when a child feels completely well.

That’s why your child may continue taking medication when they don’t have obvious symptoms.

Feeling well is the goal — but continuing the prescribed treatment can be part of staying well.

What are the main types of IBD medications?

There are several different groups of medicines used to treat Crohn’s disease and ulcerative colitis.

Not every child will use every type, and the medicines available can differ between countries.

Aminosalicylates

Aminosalicylates, sometimes called 5-ASAs, are anti-inflammatory medicines.

One commonly used medicine is mesalazine.

They are particularly important in the treatment of ulcerative colitis, although their use depends on the individual situation.

They can be available in different forms, including tablets, capsules, granules, liquid or medicines delivered directly into the bowel.

The exact products and formulations available depend on where you live.

Corticosteroids

Steroids are powerful anti-inflammatory medicines.

They can work quickly and may be used to help bring an active IBD flare under control.

Examples include:

• Prednisolone

• Budesonide

Steroids are generally used for limited periods rather than as a long-term maintenance treatment because prolonged steroid use can cause significant side effects.

Your child’s doctor will give you specific instructions about the dose and how the medication should be reduced or stopped.

Never stop steroid medication suddenly unless your child’s healthcare team tells you to.

Immunomodulators

Immunomodulators are medicines that alter the activity of the immune system.

Examples include:

• Azathioprine

• Mercaptopurine

• Methotrexate

They may be used in some children with IBD, depending on their individual circumstances and local treatment guidelines.

These medications can require regular blood monitoring.

Your child’s IBD team will explain what monitoring is needed and what symptoms you should report.

Biologics

Biologic medicines are treatments made using biological substances and are designed to target specific parts of the immune system involved in inflammation.

Several biologic medicines are used to treat paediatric IBD.

Depending on the medication, they may target specific inflammatory pathways involved in IBD.

Biologics can be given by:

• Injection under the skin

• Intravenous infusion

The specific medicines available, approved ages and treatment schedules can vary between countries.

Biosimilars

You may also hear the term biosimilar.

A biosimilar is a biological medicine that is highly similar to an existing biological medicine and has no clinically meaningful differences from the reference medicine in terms of quality, safety and effectiveness for its approved uses.

Biosimilars are used in many healthcare systems, but availability and prescribing practices vary between countries.

If your child is offered a biosimilar, ask their IBD team why it has been recommended and whether there is anything you need to know about changing between treatments.

Why are there so many different medications?

There isn’t one medication that works for every child with IBD.

Crohn’s disease and ulcerative colitis can affect children differently.

Your child’s treatment may depend on:

• Their type of IBD

• Where inflammation is located

• How severe the inflammation is

• Their symptoms

• Growth and nutrition

• Previous treatments

• Other health conditions

• How they respond to medication

• Side effects

• Blood and stool test results

• Their age

• What treatments are approved and available where they live

Your child’s treatment plan may also change over time.

That doesn’t necessarily mean something has gone wrong.

Sometimes the IBD team changes treatment because they want to achieve better control of inflammation, maintain remission or reduce medication-related problems.

What does “response” mean?

You may hear your child’s doctor talk about whether they are responding to treatment.

This generally means the treatment is having the desired effect.

You might notice:

• Fewer bowel movements

• Less diarrhoea

• Less blood

• Less abdominal pain

• Better appetite

• More energy

• Improved weight or growth

Your child’s healthcare team may also look for improvement in objective measures of inflammation, such as blood or stool tests.

What does remission mean?

Remission generally means the IBD is under control.

But remission can be assessed in different ways.

Your child’s symptoms may improve significantly while tests still show inflammation.

That’s why your IBD team may monitor more than just how your child feels.

You may hear terms such as:

• Clinical remission

• Biochemical remission

• Endoscopic remission

Your child’s gastroenterologist can explain what these terms mean in relation to their treatment goals.

What are side effects?

Every medication can have potential side effects.

The important thing is to understand the difference between:

A common or expected side effect

and

A symptom that needs medical attention.

Your child’s IBD team should explain the important side effects associated with their medication and what you should do if they occur.

Medication information can differ between countries, so use the information provided by your child’s healthcare team and the official information supplied with their medication.

Don’t stop an IBD medication because you’re worried about a possible side effect without speaking to the healthcare team first, unless you have been given specific instructions to do so.

🧪 Why does my child need blood tests?

Some IBD medications require regular blood monitoring.

Blood tests may be used to check:

• Blood cell counts

• Liver function

• Kidney function

• Inflammation

• Medication-related effects

• Nutritional markers

The exact tests and frequency depend on the medication your child is taking and their individual circumstances.

If your child has regular blood tests, ask their IBD team what they are monitoring and when you should expect the results.

🦠 What about infections?

Some IBD medications affect the immune system.

This can change how your child’s body responds to infections.

Before starting certain treatments, your child’s healthcare team may check vaccination history, screen for particular infections and perform other tests depending on the medication and local clinical guidelines.

If your child develops a significant infection or becomes unexpectedly unwell, contact their healthcare team for advice.

The advice can differ depending on the medication your child is taking, so don’t assume that every treatment should be handled in exactly the same way.

💉 What about vaccines?

Vaccination advice can depend on your child’s medication and whether it affects the immune system.

Some vaccines can be given routinely, while certain live vaccines may require special consideration for children taking particular immunosuppressive treatments.

Vaccination schedules and recommendations also vary between countries.

Always tell your child’s healthcare team which medications they are taking before receiving a vaccine, and ask what vaccination schedule is appropriate for them where you live.

🏫 What should I tell the school?

Your child’s school doesn’t necessarily need to know every detail about their medical treatment.

However, it can be helpful for relevant staff to know:

• That your child has IBD

• Who to contact if they become unwell

• Whether they need medication during school hours

• Whether they have special toilet access

• What to do if they develop symptoms

• Any relevant emergency plan

The specific school support available will depend on where you live.

Your child should also have a say in what information is shared with other people, particularly as they become older.

🧳 What about holidays and travel?

If your child takes regular IBD medication, planning ahead can make travelling easier.

Before travelling, ask your healthcare team about:

• Medication supplies

• Storage requirements

• Injection or infusion schedules

• What to do if medication is lost

• Travel documentation

• Carrying medication through airports

• Vaccinations

• What to do if your child becomes unwell while away

Travel and medication rules can vary between countries.

Check the requirements for both your home country and your destination well before travelling.

Make sure you have enough medication for the trip and any unexpected delays, according to your healthcare team’s advice.

❓ What if my child refuses their medication?

Medication can be difficult for children, especially if they have to take tablets, injections or regular treatments for a condition they can’t always see or feel.

Try to understand why they are refusing it.

Is it:

• The taste?

• Difficulty swallowing?

• Fear of needles?

• Side effects?

• Embarrassment?

• Forgetting?

• Feeling angry about having IBD?

• Feeling like they don’t need medication because they feel well?

The solution may be different depending on the reason.

Talk to your child’s IBD team rather than turning medication into a daily battle.

There may be alternative formulations, techniques or support available, depending on what is available where you live.

👧 Help your child understand their medication

As children get older, they can gradually take more responsibility for their own IBD medications.

Start with simple information:

“This medicine helps keep the inflammation under control.”

As they get older, you can teach them:

• The names of their medications

• What each medication does

• When they take it

• How they take it

• What side effects to watch for

• Who to contact if there is a problem

• How to order or collect prescriptions

• How to keep track of doses

This gradual process can help prepare them for managing their IBD independently.

📋 Keep a medication list

It can be helpful to keep an up-to-date list of your child’s medications.

Include:

Medication

Dose

How often

Why they take it

You could also record:

• Allergies

• Previous medication reactions

• Recent medication changes

• Other medicines or supplements

• Your child’s IBD team’s contact details

Take the list to appointments and update it whenever something changes.

🌍 Where can I find information about medications in my country?

Because IBD medication availability and healthcare systems differ around the world, your country’s IBD organisation, medicines regulator, pharmacist and healthcare team can provide information specific to where you live.

On IBD Kids, country-specific medication pages can help explain:

• Medicines commonly used in that country

• Local medication names

• How prescriptions work

• Medication access and funding

• Where families can get further information

Always check local guidance before making decisions about your child’s medication.

Questions to ask your child’s IBD team

You don’t need to remember everything from an appointment.

Consider asking:

• What does this medication do?

• Is it for induction or maintenance?

• How long will my child need it?

• When should we expect it to start working?

• How will we know if it is working?

• What side effects should we watch for?

• Which symptoms should make us call you?

• Does my child need regular blood tests?

• Are there any vaccination considerations?

• What should we do if a dose is missed?

• What should we do if my child vomits after taking it?

• Can my child play sport normally?

• Are there medication considerations when travelling?

• What happens if this treatment doesn’t work?

• Are there alternative treatments available if this medication isn’t suitable?

❤️ You don’t need to understand everything at once

Being given a list of IBD medications can feel overwhelming.

You don’t need to memorise every drug name or understand every medical term immediately.

Start with the basics:

What is my child taking?

What does it do?

When do they take it?

What should I watch for?

Who do I contact if I have concerns?

Your child’s IBD treatment may change as they grow and as their disease changes.

The specific medications available to your child will also depend on where you live, their age, their condition and the treatments approved and available in your healthcare system.

The goal is not simply to treat symptoms. It is to control inflammation, support healthy growth and development and help your child live as normally as possible.

If you don’t understand why your child is taking a particular medication, ask. You are an important part of the IBD team.