What does my diagnosis mean?

So you've been told you have IBD.

Maybe you feel relieved to finally have an answer.

Maybe you're scared.

Maybe you're confused, angry, sad — or you don't really feel anything yet.

There isn't a right way to feel.

Being diagnosed with IBD can be a lot to take in, especially when you've probably heard lots of new words, had tests and met new doctors.

You might be wondering:

“What does this actually mean for me?”

“Am I going to have this forever?”

“Can I still go to school?”

“Can I still play sport?”

“Will I have to change what I eat?”

“Is my life going to be different now?”

Let's break it down.

🩺 What is IBD?

IBD stands for inflammatory bowel disease.

The two main types are Crohn's disease and ulcerative colitis.

IBD causes inflammation in parts of your digestive system.

It's a chronic condition, which means it can be with you for a long time.

But that doesn't mean you're going to feel sick all the time.

IBD can have periods when symptoms are active, called a flare, and periods when symptoms are much better or gone, called remission.

Your healthcare team will work with you to help control the inflammation and keep you feeling as well as possible.

💊 Does this mean I'll always need medicine?

You may need medicines to help control your IBD and keep inflammation under control.

There are different types of IBD medicines, and the treatment that works for one person might not be the same as what works for someone else.

Your IBD team will explain:

• What medicine you're taking

• Why you're taking it

• When you need to take it

• What side effects to look out for

• What to do if you miss a dose

• When you'll need check-ups or tests

You might need to take medicine even when you're feeling well.

That's because treatment isn't just about making symptoms better — it's also about helping control the inflammation.

Never stop or change your medicine without talking to your IBD team first.

🔄 What happens if I have a flare?

Even when your IBD is well controlled, you may have a flare at some point.

A flare means the inflammation in your gut has become more active.

You might notice symptoms such as:

• More diarrhoea

• Needing the toilet more often

• Urgency

• Tummy pain

• Blood or mucus in your poo

• Feeling really tired

• Losing your appetite

Your symptoms might not look exactly like someone else's.

That's why it's important to know what's normal for you and tell your parent, carer or IBD team when something changes.

Having a flare doesn't mean you've done something wrong.

🏫 Can I still go to school?

Yes.

IBD might mean you sometimes need time off school, especially when you're unwell or having tests and appointments.

But when you're feeling well, you can still go to school, learn, hang out with your friends and do the things you enjoy.

Your school can also put support in place to make things easier.

This might include:

• Easy access to the toilet

• A toilet pass

• Extra time for schoolwork

• Help catching up after being away

• Rest breaks when you're tired

• Support during exams

• Understanding from your teachers

You don't have to tell your whole class about your IBD.

You can decide who you want to know.

🏃 Can I still play sport?

For most young people with IBD, being active is still an important part of life.

You may be able to play the sports you enjoy when you're feeling well.

During a flare, you might need to slow down, rest or change what you're doing for a while.

Your healthcare team can help you work out what's right for you.

Having IBD doesn't mean you have to give up the things you love.

🍎 Do I have to change what I eat?

Not necessarily.

There isn't one diet that works for everyone with IBD.

Some foods might make your symptoms feel worse, especially when you're having a flare, while other foods may be completely fine for you.

Your healthcare team or dietitian can help you work out what you need.

It's important to make sure you're getting enough energy and nutrients to grow and stay healthy, especially while you're still growing.

Don't make big changes to your diet or cut out lots of foods without talking to your healthcare team.

🧪 Why will I need more tests?

Even when you're feeling well, your IBD team may want to check how your body is doing.

You might have:

• Blood tests

• Poo tests such as faecal calprotectin

• Scans

• Endoscopies or colonoscopies

• Growth and weight checks

Some of these tests help your doctors see whether there is still inflammation, even if you aren't having many symptoms.

Think of them as pieces of a bigger picture.

Your doctors use your symptoms, test results and how you're growing and feeling to help decide whether your treatment is working.

🧠 What about how I'm feeling?

IBD isn't just about your gut.

Having a long-term health condition can affect how you feel emotionally too.

You might feel:

• Worried about having another flare

• Embarrassed about needing the toilet

• Frustrated about taking medicine

• Angry that this happened to you

• Different from your friends

• Tired of appointments and tests

• Nervous about telling people

• Totally fine one day and upset the next

All of these feelings can happen.

If IBD is getting you down, tell someone.

You could talk to your parent, carer, IBD nurse, doctor, school counsellor or another adult you trust.

Looking after your mental health is part of looking after your IBD.

💛 Does having IBD mean I'm different?

You might feel different right now.

But having IBD doesn't change who you are.

You're still:

You.

You can still have friends.

You can still fall in love.

You can still play sport.

You can still travel.

You can still go to school.

You can still have sleepovers.

You can still study.

You can still have a career.

You can still do the things you dream about doing.

Sometimes IBD might mean you need to plan a little more.

Sometimes you might need extra support.

But IBD does not get to decide what your future looks like.

🌱 Will I have IBD forever?

IBD is a long-term condition, and there currently isn't a cure.

But there are lots of treatments that can help control inflammation and keep people well.

Many people with IBD have long periods where they feel well and get on with everyday life.

Treatment and research are also continuing to improve.

Your IBD team will help you manage your condition as you grow and become more independent.

And as you get older, you'll learn more about your own body and how to look after yourself.

🧑‍🤝‍🧑 You don't have to manage it alone

When you're first diagnosed, your parent or carer will probably be involved in lots of your healthcare.

That's okay.

As you get older, you'll gradually learn how to:

• Understand your medicines

• Know your symptoms

• Prepare for appointments

• Ask your own questions

• Speak up when something doesn't feel right

• Manage your healthcare more independently

You don't have to know how to do all of this straight away.

You'll learn as you go.

❓ Questions you might want to ask your IBD team

You don't have to remember everything your doctors tell you.

Write down questions or keep them in your phone.

You could ask:

“Which type of IBD do I have?”

“Where is my IBD in my body?”

“What treatment am I starting?”

“What should I do if I think I'm having a flare?”

“What symptoms should I tell you about?”

“How often will I need appointments?”

“Can I still play my sport?”

“What should my school know?”

“Who can I contact if I'm worried?”

There are no silly questions.

💛 You are more than your diagnosis

It might feel like IBD is a huge part of your life right now.

That's understandable.

There's a lot to learn, and you may have more appointments and tests than you're used to.

But over time, IBD can become something you manage, rather than something that takes over everything.

You will learn what works for you.

You'll learn how to recognise changes in your body.

You'll learn when to ask for help.

And you'll have a team of people supporting you along the way.

🌟 Remember

Being diagnosed with IBD is a big thing.

But your diagnosis is not your identity.

You are still the same person you were before you heard the words “Crohn's disease” or “ulcerative colitis.”

You can still make plans.

You can still dream big.

You can still have adventures.

You might have some extra things to think about along the way — but you don't have to let IBD define what you can do.

Your diagnosis is part of your story. It isn't the whole story. 💛