Who is who on your child's IBD healthcare team?

When your child is diagnosed with Crohn's disease or ulcerative colitis, you may suddenly find yourself meeting lots of different healthcare professionals. From gastroenterologists and nurses to dietitians and psychologists, each person has a different role in helping your child manage IBD.

It can feel overwhelming trying to remember everyone's name, understand what they do and work out who to contact when you have a question.

The good news is that you don't need to know everything straight away. Understanding the roles of the people involved in your child's care can help you feel more confident, know where to turn for support and make the most of your appointments.

👩‍⚕️ Your child's IBD gastroenterologist

A gastroenterologist is a doctor who specialises in conditions affecting the digestive system, including Crohn's disease and ulcerative colitis.

Your child's gastroenterologist usually leads their medical care and helps develop their treatment plan.

They may:

• Diagnose and monitor your child's IBD.

• Prescribe and adjust medications.

• Arrange investigations, such as blood tests, stool tests, endoscopies and scans.

• Assess whether the disease is in remission or becoming active.

• Monitor growth, puberty and possible complications.

• Coordinate care with other specialists when needed.

Some children see a paediatric gastroenterologist, who specialises in digestive conditions in babies, children and teenagers.

When to contact them: For questions about your child's diagnosis, treatment plan, disease activity, medication changes or ongoing symptoms.

🩺 Your IBD nurse or specialist nurse

An IBD nurse is often one of the most important contacts for families. Depending on your healthcare service, they may be called an IBD clinical nurse specialist, IBD nurse coordinator or specialist nurse.

They help connect the different parts of your child's care and may be easier to contact between appointments than the doctor.

They may:

• Answer questions about symptoms and treatment.

• Explain medications and how to take them.

• Help you understand blood and stool test results.

• Coordinate appointments and investigations.

• Provide advice about what to do if symptoms worsen.

• Help arrange urgent assessments when necessary.

• Support your child as they learn to manage more of their own care.

Not every hospital has a dedicated paediatric IBD nurse, and the services available can vary.

When to contact them: For questions about symptoms, medication routines, test results, appointments or what to do if you think your child is flaring. Follow your team's instructions for urgent symptoms.

🥗 Your paediatric dietitian

A dietitian helps make sure your child gets the nutrients they need to grow, develop and maintain their strength.

IBD can affect appetite, digestion and nutrient absorption. Some children also have dietary restrictions or struggle to eat enough when they feel unwell.

A dietitian may:

• Review your child's diet and nutritional intake.

• Monitor weight, growth and nutritional concerns.

• Help identify possible deficiencies, such as iron, calcium or vitamin D.

• Suggest ways to manage eating difficulties during a flare.

• Help your family plan balanced meals and snacks.

• Discuss specialised nutrition approaches when appropriate.

• Support your child if they avoid foods or have concerns about eating.

A dietitian can also help you understand which dietary changes may be useful and which restrictions could lead to nutritional gaps.

When to contact them: If your child is losing weight, struggling to eat, avoiding many foods, experiencing nutritional deficiencies or needs help meeting their nutritional requirements.

🧠 Your child's psychologist or mental health professional

Living with IBD can affect a child's emotional wellbeing, friendships, confidence and sense of control. Hospital visits, unpredictable symptoms, pain and worries about having an accident can all be difficult to manage.

A psychologist or other appropriately qualified mental health professional can help your child develop strategies for coping with these challenges.

They may:

• Help your child manage anxiety and stress.

• Teach coping strategies for procedures and hospital visits.

• Support them through difficult emotions related to their diagnosis.

• Help with worries about school, friendships and body image.

• Work with your family on communication and emotional support.

• Help your child adjust to changes caused by IBD.

Psychological support does not mean symptoms are imaginary or that stress is the cause of IBD. It recognises that physical and emotional health are connected and that children deserve support with both.

When to contact them: If your child is persistently anxious, withdrawn, distressed about their condition, struggling at school or finding it difficult to cope emotionally.

🩸 Your child's paediatrician or family doctor

Your child's paediatrician or family doctor may continue to provide general medical care alongside the specialist IBD team.

Depending on your healthcare system, this may be your child's regular paediatrician, general practitioner (GP) or primary care doctor.

They may:

• Manage everyday illnesses and general health concerns.

• Monitor growth and development.

• Provide routine vaccinations and preventive healthcare advice.

• Help assess symptoms that may be unrelated to IBD.

• Coordinate referrals to other specialists.

• Support your family with general health questions.

It is helpful for your primary care doctor to know about your child's IBD and medications, particularly if your child takes medicines that affect the immune system.

When to contact them: For general health concerns, routine care and illnesses outside the scope of your specialist team's advice. For suspected flares or significant new symptoms, follow your IBD team's contact plan.

💉 Your infusion or medication team

Some children receive biologic medicines or other treatments through infusions or injections. Depending on the treatment and hospital, a specialist nurse, infusion nurse or day treatment team may help administer and monitor these medicines.

They may:

• Arrange and administer infusions.

• Check your child before, during and after treatment.

• Monitor for infusion reactions or other immediate problems.

• Explain how to prepare for treatment.

• Provide instructions for medicines given at home.

• Help coordinate treatment appointments.

The team may also explain what to expect during an infusion and what symptoms to report afterwards.

When to contact them: For questions about infusion appointments, treatment preparation, injection technique or symptoms related to treatment. For severe or rapidly worsening symptoms, seek urgent medical care rather than waiting for a reply.

🧪 The laboratory and diagnostic team

Your child's care may involve laboratory staff, radiologists, endoscopy teams and other professionals who help investigate and monitor IBD.

You may not meet all of these people directly, but their work provides important information for your child's healthcare team.

They may be involved in:

• Blood tests that check for anaemia, inflammation and nutritional deficiencies.

• Stool tests that assess inflammation or look for infections.

• Imaging, such as ultrasound or MRI.

• Endoscopy and colonoscopy procedures.

• Monitoring how well treatment is working.

Your gastroenterologist or IBD nurse will usually explain why a test is needed and what the results mean. Some results may be available before your next appointment, while others require more time or specialist interpretation.

When to contact your team: If you are unsure why a test has been ordered, when results will be available or whom to contact about a result.

🏥 Other specialists your child may see

Some children need additional specialists depending on their symptoms, treatment or complications.

These may include:

• A colorectal surgeon: Provides advice about surgical options if surgery becomes necessary.

• A pharmacist: Helps explain medications, dosing, possible interactions and safe medicine use.

• An endocrinologist: Assesses certain growth, puberty, hormone or bone-related concerns.

• A dermatologist: Helps manage skin conditions that may occur alongside IBD or as a medication-related problem.

• An ophthalmologist: Assesses eye problems, including inflammation that can sometimes be associated with IBD.

• A rheumatologist: Helps assess joint pain or inflammatory conditions affecting the joints.

• A social worker: Helps families navigate practical, emotional, financial or social challenges associated with illness and hospital care.

Not every child will need these specialists. Your child's gastroenterologist can help determine whether a referral is appropriate.

🏫 What about support outside the hospital?

Your child's healthcare team may also work with people who support them in everyday life.

Depending on your child's needs, these may include:

• School staff: Teachers, school nurses, counsellors or learning support staff who help with toilet access, fatigue, absences and learning adjustments.

• A school counsellor: Provides support with worries, friendships or emotional difficulties at school.

• A community nurse: May provide additional nursing support where this service is available.

• A patient support organisation: Offers reliable information, peer support, education sessions or family programs.

These people do not replace your child's medical team, but communication between home, school and healthcare professionals can make day-to-day life easier.

Only share the medical information that is necessary, and involve your child in decisions about sharing information as appropriate for their age and understanding.

📞 Who should you contact if your child is unwell?

One of the most useful things you can do is ask your IBD team for a clear plan explaining who to contact when symptoms change.

In general:

• Questions about ongoing symptoms or a possible flare: Contact your IBD nurse or gastroenterology team using their recommended contact method.

• Medication questions: Contact the relevant specialist, IBD nurse or pharmacist.

• General illnesses: Contact your family doctor or paediatrician when appropriate, while keeping your IBD team informed if the illness may affect treatment.

• Urgent or severe symptoms: Seek urgent medical assessment. Do not wait for a routine appointment or an email reply.

Seek urgent medical care if your child has severe or worsening abdominal pain, significant bleeding, repeated vomiting, a swollen abdomen, fainting, signs of severe dehydration or appears seriously unwell. Follow any specific emergency instructions given by your child's healthcare team.

If you are unsure how serious a symptom is, contact your local urgent medical advice service or seek an assessment.

📝 How to make the most of your child's healthcare team

You don't need to remember every detail from every appointment. A few simple habits can help you feel more organised.

Keep a contact list

Save the names, roles and contact details of your child's key healthcare professionals. Include the usual contact method and what to do outside office hours.

Keep a current medication list

Record medication names, doses, schedules and any known allergies or previous reactions. Update the list whenever treatment changes.

Write down questions before appointments

It is easy to forget questions when you're worried or trying to take in lots of information. Keep a running list on your phone or in a notebook.

Ask who is coordinating care

Find out who your main contact is and whether there is an IBD nurse or coordinator who can help direct questions to the right person.

Bring information from other healthcare professionals

If your child sees multiple specialists, ask how their recommendations will be shared. Keep copies of important results or letters when useful.

Help your child build confidence

As your child gets older, encourage them to ask questions and understand their treatment. You can still advocate for them while gradually helping them take part in decisions about their care.

❤️ Remember, you are part of the team too

As a parent or carer, you know your child better than anyone else. You often notice changes in their appetite, energy, mood, symptoms and everyday behaviour before anyone else does.

Your observations are valuable, and you have every right to ask questions when something doesn't seem right.

You don't need to manage every aspect of IBD on your own. Your child's healthcare team is there to provide medical care, answer questions and help you navigate the challenges that may arise.

If you're unsure who to contact, start with your child's IBD nurse or gastroenterology team and ask them to point you in the right direction.