Understanding your IBD medicines

If you have Crohn’s disease or ulcerative colitis, you might need to take medicine to help you feel better and keep your bowel healthy. You might take tablets, swallow capsules, use liquids, have injections or visit the hospital for an infusion.

Sometimes, taking medicine can feel like a lot to deal with. You might wonder why you need it when you feel fine, or why you have to keep taking it when your tummy isn't hurting anymore.

Let's look at what your IBD medicines do, why they are important and how they help you stay well.

🧠 What do IBD medicines actually do?

IBD causes inflammation in your digestive system. Inflammation happens when your body's immune system becomes overactive and causes swelling and irritation in your bowel.

This inflammation can cause symptoms such as tummy pain, diarrhoea, blood in your poo and feeling very tired.

IBD medicines work in different ways to help control this inflammation. Depending on your medicine, it might:

• Calm down inflammation in your bowel.

• Help your bowel lining heal.

• Reduce symptoms such as tummy pain and diarrhoea.

• Help prevent future flares.

• Keep your IBD under control so you can get on with everyday life.

Different medicines do different jobs, and your medical team chooses the ones that are right for you.

🌱 Why do I need medicine if I feel fine?

This is a really good question!

When your IBD is under control, you might feel completely normal. You might have no tummy pain, no diarrhoea and plenty of energy.

But even when you feel well, there can sometimes still be inflammation inside your bowel.

Your medicine helps keep that inflammation under control and gives your bowel the best chance to heal and stay healthy.

Think of it like looking after a garden. Even when the plants look healthy, you still need to water them and take care of them to help them keep growing.

Feeling better doesn't always mean your IBD has disappeared. Keep taking your medicine as prescribed, even when you feel well, unless your medical team tells you otherwise.

🔥 What happens when I have a flare?

A flare happens when your IBD becomes more active. You might notice that your tummy hurts more, you need the toilet more often, or you feel tired and unwell.

During a flare, your medical team might change your treatment or give you extra medicine to help calm the inflammation.

You might need to:

• Have some tests to check how much inflammation is in your bowel.

• Take a different medicine or adjust your treatment.

• Have extra appointments with your IBD team.

• Rest more while your body recovers.

Sometimes, your symptoms improve before the inflammation has completely settled. Your medical team can help check how well your treatment is working.

If your symptoms are getting worse, tell your parent or carer and let your medical team know. Don't change your medicine or take extra doses by yourself.

💊 What are the different types of IBD medicines?

There are several types of medicines used to treat Crohn's disease and ulcerative colitis.

You might take one medicine or a combination of different medicines.

Here are some of the main types.

🩹 5-ASAs

Medicines such as mesalazine help reduce inflammation in the bowel. They are commonly used for ulcerative colitis and may be taken as tablets, granules or rectal treatments.

You might recognise a medicine called Pentasa.

🛡️ Immunomodulators

Medicines such as azathioprine help control the immune system so it causes less inflammation in your bowel.

They can take time to work, so your medical team will monitor how you are doing and check your blood tests while you take them.

🎯 Biologics and other advanced medicines

These medicines target particular parts of the immune system involved in inflammation.

Some are given as injections at home, while others are given through an infusion at a hospital or clinic. Some advanced medicines can also be taken as tablets.

They can help control IBD when other treatments have not worked well enough or when stronger treatment is needed.

🚨 Steroids

Steroids, such as prednisolone, can help reduce inflammation quickly during a flare.

They are usually used for short periods because taking them for a long time can cause unwanted side effects. They are not usually the medicine used to keep IBD under control long term.

Your medical team will explain how to take them and how to reduce the dose safely if needed.

⏰ Why do I have to take my medicine regularly?

Taking your medicine as prescribed helps it do its job properly.

If you miss doses or stop taking your medicine, your IBD may become active again. This can increase the chance of a flare and may make it harder to keep your bowel healthy.

Here are some ways to remember your medicine:

• Set a reminder. Ask a parent or carer to help you set an alarm.

• Use a checklist. Tick off each dose as you take it.

• Build a routine. Take your medicine at the time recommended by your medical team.

• Ask questions. If you don't understand why you need a medicine, ask your parent, doctor or pharmacist to explain it.

If you forget a dose, ask your parent or carer to check the instructions or contact your pharmacist or medical team. Don't double up on doses unless they specifically tell you to.

🩺 What about side effects?

All medicines can have side effects, and IBD medicines are no different.

Some medicines can cause tummy upset, headaches or other problems. Others can affect your immune system or require regular blood tests to check that everything is okay.

This doesn't mean you will experience side effects. Everyone responds differently to medicine.

It's important to:

• Tell an adult if you notice something unusual after taking your medicine.

• Attend your blood tests and appointments.

• Ask your medical team what side effects to look out for.

• Check with your doctor or pharmacist before starting new medicines or supplements.

Some medicines need extra precautions to help keep you safe. Your medical team can explain what applies to your treatment.

Never stop taking your medicine on your own because you are worried about side effects. Talk to your parent or carer and medical team so they can help you work out what to do.

🧪 Why do I need blood tests and appointments?

You might wonder why you need blood tests when you already feel better.

Blood tests and other checks help your medical team understand how your IBD is doing and whether your treatment is working safely.

Depending on your medicine, they might check:

• Whether your medicine is causing any problems.

• How your body is responding to treatment.

• Whether there are signs of inflammation.

• Whether your blood counts, liver function or other measurements are within the expected range.

Sometimes, your medical team might also ask for a poo sample to measure inflammation in your bowel. This can help them understand what is happening inside, even when you feel well.

These checks are an important part of looking after your IBD.

🤔 What if I don't like taking my medicine?

That's okay. Taking medicine every day can be annoying, especially when you would rather be doing something else.

You might dislike the taste, find tablets difficult to swallow or feel frustrated that you need medicine when your friends don't.

If this sounds like you, there are things you can do:

• Tell your parent or carer what you find difficult.

• Ask your pharmacist whether your medicine comes in another form.

• Ask your medical team if there are different treatment options.

• See if you can make taking your medicine part of a routine that works for you.

You don't have to pretend that taking medicine is easy. It's okay to feel frustrated, and it's okay to ask for help.

💬 Questions you can ask your IBD team

Understanding your medicine can help you feel more confident about looking after yourself.

At your next appointment, you could ask:

• What is my medicine called?

• What does it do inside my bowel?

• How long will it take to work?

• What should I do if I forget a dose?

• What side effects should I look out for?

• Will I need blood tests?

• How will we know if my medicine is working?

• What should I do if I get sick while taking it?

You don't need to know all the answers straight away. Learning about your treatment is something you can do one step at a time.

💙 Remember, your medicine is there to help you

IBD medicines are an important part of keeping inflammation under control, helping your bowel heal and reducing the chance of future flares.

You might not always notice your medicine working, especially when you feel well. But that doesn't mean it isn't doing something important.

Keep taking your medicine as prescribed, go to your appointments and speak up if something doesn't feel right.

And remember, you are allowed to ask questions. Understanding your treatment is one way to become more confident in managing your IBD.

You've got this! 💙