Newly diagnosed with ulcerative colitis: a parent's guide

Finding out that your child has ulcerative colitis can bring a mixture of emotions. You might feel relieved to finally have an explanation for their symptoms, but also frightened, overwhelmed or uncertain about what happens next.

You may have questions about treatment, medication, food, school, growth and what ulcerative colitis will mean for your child's future. You might also be wondering how to explain the diagnosis to your child and help them feel less worried.

Ulcerative colitis is a type of inflammatory bowel disease (IBD) that causes inflammation in the lining of the large intestine. It is a chronic condition that requires ongoing management, but treatment can help many children achieve remission and participate in everyday activities.

You do not need to understand everything straight away. The early days after diagnosis are about learning what your child needs, building a relationship with their healthcare team and taking things one step at a time.

This guide will help you understand the basics of ulcerative colitis, what to expect after diagnosis and how to support your child and family as you adjust to this new chapter.

💚 What is ulcerative colitis?

Ulcerative colitis is a chronic inflammatory condition that belongs to a group of conditions known as inflammatory bowel disease (IBD).

It causes inflammation and ulcers in the lining of the large intestine, which includes the colon and rectum. Unlike Crohn's disease, which can affect any part of the digestive tract, ulcerative colitis affects the large intestine.

The inflammation usually begins in the rectum and can extend further through the colon. The extent of inflammation varies from person to person.

The exact cause of ulcerative colitis is not fully understood. It involves an abnormal immune response and a combination of genetic and environmental factors.

Ulcerative colitis is not caused by something your child ate, something you did as a parent or a lack of good parenting. It is also not contagious.

Common symptoms in children include diarrhoea, blood or mucus in the stool, abdominal pain, urgency and fatigue. Some children may also experience reduced appetite, weight loss, anaemia or difficulties with growth.

There is currently no medication that universally cures ulcerative colitis, but treatments can control inflammation, relieve symptoms and help protect your child's health. Surgery can be a treatment option in certain circumstances.

🩺 What happens after diagnosis?

After diagnosis, your child's gastroenterology team will develop a treatment and monitoring plan based on their symptoms, test results, age, growth and the extent and severity of inflammation.

You may have several appointments in the first few months as the team explains the diagnosis, discusses treatment options and checks how your child is responding.

Your child's care may include:

• Medication to reduce inflammation and help achieve remission.

• Blood and stool tests to monitor inflammation, nutritional status and treatment response.

• Growth and weight monitoring.

• Nutritional advice from a dietitian.

• Further investigations when clinically needed.

• Support for emotional wellbeing and everyday life.

Not every child needs the same tests or treatments. Some children have relatively mild disease, while others require more intensive treatment to control inflammation.

Your child's team may use blood tests, stool tests and, when appropriate, endoscopic investigations to assess how well treatment is working.

It is important to understand that feeling better does not always mean inflammation has completely resolved. Monitoring remains important even when symptoms have settled.

Ask your gastroenterology team what the next few months are likely to involve, when follow-up appointments will take place and who to contact if you have concerns between visits.

Having a general plan can make the early stages feel more manageable.

💊 Understanding your child's treatment

One of the biggest adjustments after diagnosis is learning about the medications used to treat ulcerative colitis.

The aim of treatment is not simply to make symptoms disappear. It is also to control inflammation, heal the lining of the colon where possible and reduce the risk of complications.

Depending on your child's circumstances, treatment may include:

• 5-aminosalicylates (5-ASAs): Medicines such as mesalazine that help reduce inflammation in the lining of the colon.

• Corticosteroids: Sometimes used for short-term control of moderate or severe inflammation. They are generally not intended for long-term maintenance.

• Immunomodulators: Medicines such as azathioprine may be used in selected circumstances to help maintain disease control.

• Biologic medicines: Treatments that target specific parts of the immune system and may be used when other treatments are not sufficient or when disease severity warrants them.

• Other advanced therapies: Depending on your child's age, disease severity, treatment history and local approvals, additional targeted medicines may be considered.

Some children with more severe disease may need hospital treatment, including intravenous medication.

Your child's specialist will explain which options are appropriate and why.

You may feel nervous about medication, particularly if you have read about potential side effects. It is reasonable to ask questions about benefits, risks, monitoring and what to do if your child becomes unwell.

Do not stop or change prescribed medication without speaking to your child's healthcare team. Some treatments need to be continued even when symptoms improve.

If your child struggles with tablets, rectal medications, injections or infusions, tell the team. They may be able to suggest practical ways to make treatment easier.

🔍 Learning the difference between a flare and remission

Ulcerative colitis can change over time. Your child may experience periods when symptoms are active and other periods when they feel much better.

A flare is a period when the disease becomes more active, often causing symptoms such as diarrhoea, blood in the stool, abdominal pain, urgency or fatigue.

Remission means the disease is controlled. Depending on how remission is assessed, this may involve symptom improvement, reduced inflammation on tests or healing of the intestinal lining.

Some children feel well while inflammation is still present, which is why monitoring remains important even when symptoms have settled.

Learning what is normal for your child can help you recognise changes that need attention.

Ask your gastroenterology team:

• Which symptoms should prompt us to contact you?

• Which symptoms require urgent medical attention?

• What should we do if symptoms return?

• When should we arrange blood or stool tests?

• How will we know whether treatment is working?

Having clear instructions can help you feel more confident when symptoms change.

🚩 Symptoms to watch for

Ulcerative colitis can cause different symptoms depending on how much of the colon is affected and how active the inflammation is.

Common symptoms in children include:

• Diarrhoea, sometimes with blood or mucus.

• Abdominal pain or cramping.

• Urgency or needing the toilet frequently.

• Feeling that they still need to pass stool after going to the toilet.

• Fatigue or low energy.

• Reduced appetite.

• Unintentional weight loss.

• Poor growth or delayed puberty.

• Anaemia.

• Joint pain or other symptoms outside the digestive tract.

Symptoms may develop gradually or become more noticeable during a flare.

Contact your child's healthcare team if symptoms return, become more frequent or interfere with eating, drinking, sleep or everyday activities.

Seek urgent medical assessment if your child has severe or worsening abdominal pain, significant abdominal swelling, persistent vomiting, heavy or increasing rectal bleeding, signs of dehydration or appears seriously unwell. If you are concerned that your child needs immediate emergency care, do not wait for a routine appointment.

Your gastroenterology team should provide individual instructions about when to call and where to seek help outside normal clinic hours.

🍎 Does your child need to change their diet?

Food is often one of the first things parents worry about after an ulcerative colitis diagnosis.

You may wonder whether certain foods caused the condition, whether your child needs to avoid particular ingredients or whether changing their diet could prevent future flares.

There is no single diet that works for every child with ulcerative colitis, and food alone does not cause the condition.

However, nutrition plays an important role in supporting growth, maintaining weight and helping children meet their nutritional needs.

Some foods may worsen symptoms for an individual child, particularly during a flare, but this does not necessarily mean that the food is causing inflammation.

Try to avoid removing entire food groups without appropriate advice. Restrictive diets can make it difficult for growing children to obtain enough energy, protein, vitamins and minerals.

A paediatric dietitian experienced in IBD can help you understand:

• Which foods your child tolerates comfortably.

• How to support healthy growth and weight.

• Whether nutritional supplements are needed.

• How to manage reduced appetite or food-related symptoms.

• Whether any dietary changes may be useful for your child's individual circumstances.

If your child is eating less, losing weight or struggling with food, tell the team rather than assuming it is something you need to manage alone.

📏 Growth, weight and puberty

Ulcerative colitis can affect a child's growth and development, particularly when inflammation is active or nutritional intake is inadequate.

Some children experience weight loss, slower height gain or delayed puberty before their diagnosis. For others, growth is not significantly affected.

Once treatment begins, the healthcare team will usually monitor your child's height, weight and growth pattern over time.

Controlling inflammation and meeting nutritional needs can help support healthy development.

It is worth asking your child's team whether their growth is tracking as expected and whether they need additional nutritional support.

Puberty can be an especially sensitive time. If your child is worried about being smaller than their peers, developing later or looking different, offer reassurance and encourage them to talk about their concerns.

Growth and puberty are not just medical measurements. They can also affect confidence, friendships and emotional wellbeing.

🏫 Helping your child at school

An ulcerative colitis diagnosis can affect school life, even when your child is feeling reasonably well.

They may need time away for appointments, tests or treatment. Symptoms can make it difficult to concentrate, participate in physical education or remain in class without frequent toilet breaks.

Fatigue may also affect their ability to complete work or manage a full school day.

You do not need to tell every person at school about your child's diagnosis. However, sharing relevant information with a trusted teacher, school nurse or learning support coordinator can help them understand what your child may need.

Depending on your child's circumstances, useful arrangements may include:

• Immediate toilet access without having to ask in front of classmates.

• Permission to carry a water bottle or necessary supplies.

• Flexibility around missed work and deadlines.

• A plan for managing symptoms at school.

• Support with fatigue and physical activities.

• Time and flexibility for medical appointments.

Ask your child how much they want their classmates to know. Some children are comfortable discussing ulcerative colitis, while others prefer to keep their diagnosis private.

The goal is to help your child participate in school as comfortably as possible without feeling defined by their condition.

💛 Supporting your child's emotional wellbeing

A new diagnosis can be confusing and frightening for a child.

They may worry about pain, medication, hospital visits, missing school or whether they will always feel unwell. Some children ask lots of questions, while others avoid talking about their diagnosis altogether.

There is no single correct emotional response.

Start by giving your child simple, honest explanations that are appropriate for their age. Reassure them that ulcerative colitis is not their fault and that their healthcare team is there to help them feel better and stay healthy.

You can also:

• Encourage questions without expecting your child to understand everything immediately.

• Acknowledge difficult feelings instead of telling them not to worry.

• Maintain familiar routines wherever possible.

• Let them make age-appropriate choices about their care.

• Continue activities and friendships when they feel well enough.

• Give them opportunities to talk privately if they feel embarrassed or upset.

Some children benefit from talking to a psychologist or counsellor who understands chronic illness, particularly if anxiety, low mood or fear of symptoms begins affecting everyday life.

You do not have to solve every worry. Often, listening and reassuring your child that you will work through things together is a valuable starting point.

👨‍👩‍👧 How to tell family and friends

You may be unsure how much to tell relatives, friends and other parents about your child's diagnosis.

Some families prefer to share the news openly, while others choose to tell only a few trusted people. Both approaches are valid.

When explaining ulcerative colitis, it may help to keep the message simple:

"Our child has been diagnosed with ulcerative colitis, which is a type of inflammatory bowel disease. It causes inflammation in the large intestine, and they're now working with a specialist team on treatment. We're still learning about it, so we'll share more when we're ready."

You may receive questions, advice or suggestions about diets and alternative treatments. It is okay to acknowledge people's concern without feeling obliged to follow their recommendations.

You can say, "Thanks for caring. We're following advice from their gastroenterology team."

If your child is old enough, involve them in deciding who should know and what information they are comfortable sharing.

Protecting your child's privacy can help them feel more in control of their diagnosis.

🫂 Looking after siblings and the rest of the family

A child's diagnosis can affect everyone in the household.

Parents may feel overwhelmed by appointments, treatment decisions and worries about the future. Siblings may feel confused or left out when more attention is directed towards the child with ulcerative colitis.

Try to maintain some familiar family routines and make time for each child individually when possible.

Explain the diagnosis to siblings in an age-appropriate way, reassure them that ulcerative colitis is not contagious and let them ask questions.

It is also important to recognise your own emotional needs. You may experience relief, sadness, anger or uncertainty, sometimes all in the same day.

You do not need to have every answer or remain positive all the time. Accepting help from family, friends or professionals can make the adjustment easier.

If family stress becomes difficult to manage, your child's healthcare team may be able to connect you with a social worker, psychologist or other support services.

📝 Questions to ask your child's gastroenterologist

Appointments can feel overwhelming, particularly when you are receiving a lot of new information.

Writing down questions beforehand can help you make the most of your time with the team.

Consider asking:

• How much of my child's colon is affected?

• How active is their disease?

• What is the goal of their current treatment?

• How will we know whether treatment is working?

• What side effects should we look out for?

• Which symptoms mean we should contact the team urgently?

• What should we do if symptoms return outside clinic hours?

• How often will blood tests, stool tests or other investigations be needed?

• Does my child need support from a dietitian?

• How will their growth and puberty be monitored?

• What should the school know about their condition?

• Who should we contact if we have concerns between appointments?

You do not need to ask everything at once. Keep a running list and bring the most important questions to each appointment.

🌿 Finding reliable information and support

After diagnosis, it is natural to search online for answers. However, the amount of information available can quickly become overwhelming, and not all of it is accurate or relevant to children.

Try to prioritise information from recognised IBD organisations, paediatric gastroenterology teams and reputable healthcare services.

Depending on where you live, useful resources include:

• Crohn's & Colitis Australia: Information and support for Australians affected by IBD.

• Crohn's & Colitis Foundation: Educational resources and support for families in the United States.

• Crohn's & Colitis UK: Information about living with IBD and accessing support in the United Kingdom.

• Crohn's and Colitis Canada: Resources for people and families affected by IBD in Canada.

• Crohn's & Colitis New Zealand: Information and support for people living with IBD in New Zealand.

You may also find it helpful to connect with other parents who understand the experience of raising a child with ulcerative colitis.

Remember that another family's experience may not reflect what will happen for your child. Use shared experiences for connection and reassurance, but discuss individual medical decisions with your child's healthcare team.

🌷 Remember, you don't have to figure everything out today

An ulcerative colitis diagnosis can change how you think about your child's health and future. It is natural to have questions and to feel uncertain about what comes next.

In the beginning, focus on the essentials: understanding your child's treatment plan, knowing when to seek help, supporting their nutrition and growth, and making sure they feel loved and heard.

You will learn more as you go. You will become more familiar with your child's symptoms, the healthcare system and the practical adjustments that make daily life easier.

There may be difficult periods, but there can also be times when your child feels well, returns to their favourite activities and enjoys life without thinking about ulcerative colitis all the time.

Your child is still the same person they were before their diagnosis. Their interests, friendships, personality and dreams remain important.

You do not need to have all the answers today. You just need to take the next step, ask for support when you need it and help your child know they are not facing this alone.