Inflammatory Bowel Disease (IBD), The Children's Hospital at Westmead
Contact
IBD flare advice (Monday to Friday, 9am – 4pm)
Call the IBD nurse helpline on (02) 7825 3131
Urgent flare advice after hours (Monday, to Friday 4pm-8pm)
Call (02) 7825 0000 and ask for the on-call gastroenterologist
About our service
Welcome to our Inflammatory Bowel Disease (IBD) Service
Managing IBD is a journey best taken with a dedicated, team-based approach—because achieving the best treatment outcomes means having the right support at every step. Our multidisciplinary team works closely with you and your loved ones to provide comprehensive care tailored to your needs.
Your care team includes:
- Parents, carers, family, friends, and teachers
- IBD specialists and doctors
- IBD nurses
- Dietitians
- Pharmacists
- Psychologists
- Child Life Therapists, who use play-based strategies to help young patients prepare for procedures and treatments
- Surgeons
- Stomal therapists
- General Practitioner
Together, we’re here to support your health, wellbeing, and quality of life.
Referral process for clinicians
Our department is using Consultmed to manage referrals. The Consultmed platform allows health professionals to send e-referrals to us securely.
Consultmed questions and technical support: helpdesk@consultmed.co
Referral process for parents and carers
Request a referral
For appointments requiring a referral, you will need to get a referral from your GP, paediatrician or specialist.
They will assess your child, discuss your concerns, and make a referral to the appropriate service.
Track your referral
Our department uses Consultmed to manage referrals. Your referring clinician sends the e-referral to us using the secure Consultmed platform.
Once we receive the referral, we will send you an email with your tracking information. We will update you as we process the referral and book your appointment.
To receive these updates, please ask your referring clinician to include your email on the referral.
If your clinician has questions about Consultmed or require technical support, they can contact helpdesk@consultmed.co.
Need support?
If you need help or have questions about the referral and appointment process, please contact us.
IBD nurse: SCHN-CHW-IBDService@health.nsw.gov.au
Appointments: SCHN-CHW-Outpatients@health.nsw.gov.au
Clinic information
Our clinic helps children and families understand how food and nutrition can support:
- Gut healing and remission
- IBD symptom management
- Growth and development
- Improved energy and wellbeing
The IBD Dietitian will carry out a nutrition assessment, offer individualised advice, and may recommend nutritional supplements when needed.
At your visit: You’ll be asked to complete a diet history form while you are waiting in the clinic to the IBD dietitian. It is important to see your gastroenterologist every 3 months to review your condition and medications.
Clinic times and location
The Paediatric IBD Dietitian Clinic runs weekly at The Children’s Hospital at Westmead alongside the Gastroenterologist-led IBD Clinic:
- Wednesdays: 9:00 AM – 1:30 PM
- Thursdays: 12:30 PM – 4:30 PM
Note: Your child must be under the care of a Children’s Hospital at Westmead IBD Gastroenterologist to access this service. Referral required from your child’s IBD Gastroenterologist or IBD Nurse.
Clinic location
- Outpatients Clinic 3 (Albert Shun clinic), Outpatients Dept, Level 3, The Children's Hospital at Westmead
IBD flare clinic
If directed on the IBD Flare Management Plan (MODERATE) to book an IBD clinic appointment please send us an email.
Email: SCHN-CHW-Gastroenterology@health.nsw.gov.au
- Please make sure you tell us you have followed the Flare Management Plan and need an urgent appointment
- Infection must always be excluded before treatment of a flare is commenced
- If you decide your child needs immediate review please present to your GP or your nearest Emergency Department
- Your child's GP will receive regular written correspondence from their treating Gastroenterologist to update them on the child's progress
- Your GP can contact the Gastroenterologist on-call for advice via the Hospital Switchboard.
IBD dietitian clinic
The Paediatric IBD Dietitian Clinic supports kids and families with IBD-specific nutrition therapies and symptom and nutrition support.
Therapies offered can include:
- Exclusive Enteral Nutrition (EEN): a special liquid nutritional formula-based diet to help reduce inflammation in Crohn’s disease and supports symptom control (i.e. achieve remission).
- Crohn’s Disease Exclusion Diet (CDED): a food-based diet along with special liquid nutritional formula to help reduce inflammation in Crohn’s disease and supports symptom control (i.e. achieve remission).
- Guidance and support on dietary fibre changes to help manage strictures (i.e. narrowing).
- Overall food, nutrition and diet pattern support following a new IBD diagnosis.
If your child is unwell
If your child is unwell with a cough, cold, runny nose or flu–like symptoms please take them to the GP for medical advice.
If your child is on medications that modify their immune system (these include steroids, azathioprine, mercaptopurine, methotrexate, biologics such as infliximab, vedolizumab, Ustekinumab, tofacitinib, Upadacitinib, tacrolimus and cyclosporin) and they are unwell or have a fever greater than 38 degrees, we recommend presenting to the nearest hospital Emergency Department for medical assessment.
Your child’s medical team will be contacted on arrival to ED as required.
IBD Flare Management Plan
The following guidelines are adapted from CHOC (Children's Hospital Orange County) 'Guide for your IBD Road to Wellness', CHOC Children’s Hospital, 1201 W. La Veta Avenue, Orange, CA 92868, USA
MILD = MONITOR
If you have any of the following symptoms:
- Abdominal pain that is bearable
- First sight of blood in stool
- Mild increased bowel motions (partially formed) 3-5 times in 24 hours
- Waking at night for bowel movement
- Change in appetite and/or energy for 24-48 hours
You need to:
- Go to the GP
- Ensure medication compliance
- Complete blood & stool tests to exclude infection
- Reduce stress
- Avoid dietary triggers
- Ensure future IBD clinic appointment is booked
MODERATE = CONTACT
If you have any of the following symptoms:
- Abdominal pain that is bearable and relieved with intervention
- Blood <50% small amount with most stools
- Increased bowel motions (partially formed) 6-8 times in 24 hours
- Decreased appetite or fatigue >48hrs
- Joint pain affecting mobility
You need to:
- Contact:
- Monday to Friday 9:00am - 4:00pm: SCHN-CHW-IBDService@health.nsw.gov.au | (02) 7825 3131
- Monday to Friday 4:00pm - 8:00pm (urgent advice only): (02) 7825 000
- If you do not receive a response and you are still concerned, contact your GP or nearest Hospital Emergency Department.
SEVERE = PRESENT TO EMERGENCY/ DOCTOR
If you have any of the following symptoms:
- Abdominal pain that is not relieved with intervention •
- Blood >50% of all stools and/or clots
- Persistent diarrhoea >8 times in 24 hours
- Dark green vomit
- Dehydration – no oral intake
- Fever >38deg whilst on steroids, biological or immunomodulator medications that suppress your immune system
You need to: Present to nearest Hospital Emergency Department for medical assessment
- If you have been given specific guidance by the IBD team when symptoms increase, please follow the plan.
- If you have not received a response during business hours, please contact your GP for medical advice.
- If you are concerned and have done all you can to manage the symptoms, please present to nearest hospital
