My child has just been diagnosed with IBD. What happens now?

A step-by-step guide to the early days after an IBD diagnosis, including treatment, medications, tests, nutrition, school, flares and helping your child adjust.

Finding out that your child has inflammatory bowel disease (IBD) can be a huge moment for your family.

You may feel relieved to finally have an explanation for what has been happening, while also feeling overwhelmed by new medical terms, tests, medications and decisions.

You might be wondering:

What happens now?

Will my child get better?

What treatment will they need?

What should they eat?

Can they still go to school?

What should I tell them?

There isn't one exact path after an IBD diagnosis. Crohn's disease and ulcerative colitis can affect children differently, and treatment depends on your child's symptoms, test results, age, growth, disease location and individual circumstances.

But knowing what the early days may involve can make everything feel a little less overwhelming.

🩺 Step 1: Make sure you understand the diagnosis

Your child's IBD team will usually explain whether your child has:

• Crohn's disease

• ulcerative colitis

• or, in some cases, IBD that cannot yet be clearly classified.

Ask the team to explain the diagnosis in language you understand.

You may want to ask:

• What type of IBD does my child have?

• Where is the inflammation?

• How active is the disease?

• What did the tests show?

• Are there any complications?

• How is this affecting my child's growth or nutrition?

• What happens next?

Don't worry if you can't remember everything.

There can be a lot of information during the first few appointments. Take notes, write down questions and ask the IBD team to explain anything you don't understand.

📋 Step 2: Find out who is looking after your child

Your child's care may involve more than just a gastroenterologist.

Depending on where you live and your child's needs, their IBD team may include:

• paediatric gastroenterologist

• IBD nurse

• dietitian

• pharmacist

• psychologist or mental health professional

• other specialists.

Ask who you should contact if you have a question or your child's symptoms change.

It can be helpful to save the team's phone number and contact details somewhere easy to find.

💊 Step 3: Talk about treatment

Once your child's IBD has been diagnosed, the team will discuss a treatment plan.

Treatment generally aims to:

• reduce inflammation

• control symptoms

• achieve remission

• support healthy growth and development

• prevent complications

• maintain remission over time.

Your child's treatment may involve medication, nutritional therapy, or a combination of approaches.

The treatment recommended will depend on your child's individual IBD and how active it is.

Induction and maintenance treatment

You may hear the terms induction and maintenance.

Induction treatment is treatment used to bring active IBD under control and achieve remission.

Maintenance treatment is used to help keep the disease under control and reduce the risk of another flare.

Your child's treatment may change over time depending on how they respond.

💊 Step 4: Learn about your child's medications

If your child is prescribed medication, ask the IBD team to explain:

• what each medication is for

• how much your child needs to take

• when it should be taken

• how it should be given

• common side effects

• what to do if your child misses a dose

• whether blood tests are needed

• whether there are any vaccination considerations

• what to do if your child becomes unwell

• how the medication should be stored.

You don't need to memorise everything immediately.

Keep a written medication list with the medication name, dose and schedule.

Medication names can be confusing at first, particularly when you hear both generic and brand names.

🧪 Step 5: Expect more tests and monitoring

An IBD diagnosis doesn't necessarily mean the testing is finished.

Your child's team may continue monitoring:

• symptoms

• blood tests

• stool tests

• faecal calprotectin

• weight

• height

• growth

• nutrition

• medication response.

Your child may also need additional imaging or procedures depending on their diagnosis and treatment plan.

Why does monitoring matter?

IBD symptoms don't always tell the whole story.

A child can sometimes feel better while inflammation is still present.

Your child's IBD team may therefore use symptoms, blood tests, faecal calprotectin and other assessments together to understand how well treatment is working.

📈 Step 6: Keep an eye on growth

Growth is an important part of paediatric IBD care.

Active inflammation, reduced appetite, nutritional deficiencies and other factors can affect weight, height and puberty.

Your child's IBD team will usually monitor their growth over time.

Don't become alarmed by every small change on the scales.

What's important is the overall pattern of growth and what your child's healthcare team sees.

If you're concerned about weight, height, appetite or puberty, ask the team whether your child would benefit from seeing an IBD dietitian or another specialist.

🥗 Step 7: Talk about food and nutrition

One of the first questions many parents ask is:

“What should my child eat now?”

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

Your child's nutritional needs may depend on their disease, symptoms, growth, treatment and whether they are currently experiencing a flare.

Your IBD team may recommend particular nutritional strategies.

Some children may need additional nutrition support, and some may have specific dietary requirements.

Try not to restrict foods unnecessarily

It can be tempting to remove lots of foods after diagnosis because you're worried they might trigger symptoms.

But unnecessary restriction can make it harder for children to get enough energy and nutrients, particularly while they are growing.

If you're unsure what your child should eat, ask their IBD team or dietitian rather than making major dietary changes on your own.

🏫 Step 8: Let the school know

Your child's school may need to know about their IBD, particularly if symptoms, medication, fatigue or medical appointments could affect school.

You don't have to tell everyone everything.

Start by identifying the adults who need to know.

Depending on your child's circumstances, this might include:

• classroom teacher

• year coordinator

• school nurse or wellbeing staff

• relevant support staff

• teachers supervising PE or activities.

Talk with the school about practical needs such as:

• immediate toilet access

• fatigue

• absences

• medical appointments

• medication

• catching up after missed school

• exams and assignments

• PE and sport

• camps and excursions.

A written school support plan can make these arrangements clearer.

🚽 Step 9: Make a plan for symptoms and flares

Your child's IBD team should help you understand what symptoms to look out for and what to do if your child's condition becomes worse.

Ask:

“How will I know if my child is having a flare?”

You may be asked to watch for changes such as:

• increased diarrhoea

• blood in bowel movements

• urgency

• abdominal pain

• fatigue

• reduced appetite

• weight loss

• symptoms waking your child overnight

• other changes that are unusual for your child.

Keep your child's IBD team's contact details somewhere easy to access.

You may also find it helpful to keep a simple symptom record when your child is unwell.

You don't need to track every detail forever.

The purpose is to notice meaningful changes and give the healthcare team useful information.

📞 Step 10: Know when to contact the IBD team

Before you leave an appointment, ask:

“What should make me call you?”

Ask the team what symptoms they want you to report and how quickly you should contact them.

Also ask what to do outside normal clinic hours.

Make sure you understand the difference between:

• something you can monitor at home

• something that requires a call to the IBD team

• something that needs urgent medical attention.

If your child is severely unwell or you believe they need emergency medical care, seek urgent medical help.

🧠 Step 11: Give your child information they can understand

A diagnosis can be frightening for a child.

How much you explain will depend on their age, maturity and what they want to know.

Use simple, honest language.

You might say:

“You have a condition called IBD. It means part of your digestive system gets inflamed. Your doctors are going to help us get the inflammation under control.”

Let your child ask questions.

They may want to know:

• Will I always have this?

• Can I still play sport?

• Can I still eat my favourite foods?

• Do I have to take medicine forever?

• Will my friends know?

• Will I have to go to hospital?

• Did I do something to cause this?

You don't need to have every answer.

It's okay to say:

“I don't know yet. Let's ask your IBD team.”

💛 Step 12: Reassure your child that IBD isn't their fault

Children sometimes wonder whether they caused their illness.

Make sure your child knows:

They did not cause their IBD.

IBD is not simply caused by eating the wrong foods or doing something wrong.

You can also reassure them that having IBD doesn't mean they have to give up everything they enjoy.

With appropriate treatment and support, children with IBD can go to school, have friends, play sport, travel and take part in everyday activities.

There may be times when adjustments are needed, but IBD doesn't define who your child is.

👨‍👩‍👧 Step 13: Give siblings and family time to adjust

A diagnosis affects the whole family.

Siblings may worry about their brother or sister, feel left out because parents are spending more time at appointments, or simply not understand what's happening.

You don't need to explain every medical detail.

Simple, age-appropriate information can help:

“Their tummy is inflamed and the doctors are helping them get better.”

Try to maintain familiar routines where possible.

At the same time, give yourself permission to acknowledge that life may feel different for a while.

📚 Step 14: Don't try to learn everything at once

There can be a huge amount to learn after diagnosis.

You may suddenly hear words like:

• inflammation

• remission

• flare

• faecal calprotectin

• colonoscopy

• biologic

• immunomodulator

• induction

• maintenance

• mucosal healing.

It can feel like learning a completely new language.

You don't need to become an IBD expert overnight.

Start with the things that matter most right now:

What is happening?

What treatment is my child starting?

What should I watch for?

Who do I contact if something changes?

You can learn the rest gradually.

📝 Step 15: Start an IBD folder

Having one place for your child's information can make life much easier.

You could keep:

• diagnosis information

• medication list

• appointment notes

• blood test results

• faecal calprotectin results

• procedure reports

• dietitian information

• school support plans

• emergency contact details

• questions for the next appointment.

A digital folder can work just as well as a physical one.

Choose whatever is easiest for your family.

🗓️ Step 16: Keep a list of questions

Questions often come to you after you've left the appointment.

Keep a note on your phone or in a notebook.

You might write:

• Is this symptom normal?

• When should we contact you?

• What should we do if my child misses a dose?

• What should they eat?

• Can they play sport?

• What should school know?

• When is the next blood test?

• When will we know if treatment is working?

• What happens if this medication doesn't work?

There is no such thing as a silly question when it comes to your child's health.

🌱 Step 17: Give everyone time to adjust

The first days and weeks after diagnosis can feel intense.

There may be appointments, tests, medications, school conversations and lots of new information.

You don't have to solve everything immediately.

Your family is learning how to live with a new diagnosis, and that takes time.

Some days may feel organised and manageable.

Other days may feel completely overwhelming.

Both are normal.

🔎 What should you focus on first?

If you're feeling overwhelmed, start here:

Today

☐ Make sure you understand your child's diagnosis.

☐ Save your IBD team's contact details.

☐ Write down your child's medications and doses.

☐ Ask what symptoms should prompt you to contact the team.

This week

☐ Learn about your child's treatment plan.

☐ Find out what monitoring and tests are coming up.

☐ Talk to the school if support is needed.

☐ Ask about nutrition and whether an IBD dietitian is recommended.

☐ Start a list of questions for the next appointment.

Over the next few weeks

☐ Learn more about your child's specific type of IBD.

☐ Understand how treatment is being monitored.

☐ Make sure school support arrangements are in place.

☐ Help your child understand their diagnosis in an age-appropriate way.

☐ Start building routines around medication and appointments.

You don't need to do everything on this list at once.

💛 The early days won't always feel like this

A new IBD diagnosis can make the future feel uncertain.

You may be wondering what life will look like now, whether your child will have more flares, how treatment will work and how IBD will affect school, friendships and everyday life.

It's okay not to have all the answers yet.

The early days are about getting your child the right care, understanding the treatment plan and gradually learning how to manage IBD as a family.

Over time, the medical terms become more familiar. Medication routines become easier.

You learn what your child's symptoms look like and when to ask for help.

And your child can continue growing, learning, making friends and doing the things they enjoy.

You don't have to figure out the whole IBD journey today.

Take it one step at a time, stay connected with your child's IBD team and give yourself and your child time to adjust.