Crohn's, colitis and IBD services at The Children's Hospital at Westmead

COVID -19 Changes to services

We have reduced the number of face-to-face clinic appointments due to COVID-19.

Patients who are well may be monitored via appointments using Telehealth (PEXIP), Skype for Business, or over the phone. In preparation for this, we recommend downloading the PEXIP Telehealth App to your PC or mobile device. 

If you are scheduled for a Telehealth (PEXIP), Skype for Business, or phone appointment, please download the PEXIP Telehealth App to your computer or mobile device. You will need a computer with a webcam and Chrome browser.

  • Log on at least 5 minutes before your child's appointment time.
  • Clerical staff will contact you to explain the need for blood and/or stool tests collected locally.
  • Pathology test forms and scripts will be emailed whenever possible.
  • You will also need a current Referral. 

Gastroenterological Society of Australia (GESA)

IBD appointments

See above for current information regarding Clinic appointments during the current COVID pandemic.

IBD clinicians

  • Staff specialists: Dr Shoma Dutt, Dr Annabel Magoffin and Dr Kunal Thacker
  • Visiting GI Specialists: Dr Eric Cheah and Dr Cheng Hiang Lee

If you usually see Dr Eric Cheah or Dr Cheng Hiang Lee in the IBD clinic, your appointment may be rescheduled to their private rooms.

Contacting nursing staff during the Pandemic

Due to the reduced staffing, the best way to contact the IBD nurses is to email SCHN-CHW-IBDService@health.nsw.gov.au. You will receive a response during business hours.

Nursing education will be delivered via telehealth or over the phone.

Contact the clinic if:

  • If your child has developed a flare they will need to be reviewed by a doctor.
  • Please contact the IBD clinic to arrange an appointment and let us know your child is unwell or 'in flare' so that we can see you ar the next available appointment.
  • Our clinics operate every week and you will be seen by the next available Gastroenterologist.
  • If you cannot be seen in the IBD clinic in the next 3-5 days, we advise you to visit your GP for assessment and blood and stools samples collection. This is to ensure there is no infection prior to commencing treatment of a flare.
  • If you feel your child needs immediate review please present to your GP or nearest Emergency Department.
  • Your child’s GP will receive regular written correspondence from the treating Gastroenterologist to update them on their progress. Your GP can contact the Gastroenterologist on-call for advice via the Hospital switchboard.

Managing your child's health

If your child is sick

If your child is unwell with a cough, cold, runny nose or ‘flu’–like symptoms please take them to the GP or the Emergency Department for review. You will need to call ahead.

However, if your child is on any immunosuppressant medications (such as Steroids, Azathioprine (Imuran), 6-MP, Methotrexate, Infliximab, Humira, Vedolizumab or Stelara) and has a fever greater than 38 degrees they should present to the nearest ED.

Medications

  • Your child needs to continue to take their prescribed medicine. It's important to have an adequate supply.
  • Please organise all external scripts with your GP being aware there may be a delay in GP appointments.
  • Scripts that are dispensed through the Hospital pharmacy, such as Methotrexate injections or Liquid Sulfasalazine/Azathioprine, will require at least one week’s notice.
  • Maintenance medications used in IBD take many months to leave the body, thus stopping these will not help in the short term. Stopping them may increase the risk of flare.
  • Biological therapies are generally safe and at present, we do not recommend stopping these. The effects of these medications also remain in the body for months. Stopping these medications may increase the risk of flare.

IBD flares

An IBD flare is the reappearance of disease symptoms. The most common symptoms of Inflammatory Bowel Disease are:

  • Frequent and/or urgent bowel movements
  • Diarrhoea
  • Bloody stools
  • Abdominal pain
  • Weight loss
  • Nausea and vomiting

Other symptoms including poor appetite, fatigue, joint and body aches, skin rashes and painful red eyes/visual disturbance may also occur.

The symptoms of an IBD flare will vary from person to person and may change over time.

The symptoms are also dependent on the disease location and whether it is Crohn’s Disease or Ulcerative Colitis.

Flare causes and management

Disease flares can be hard to avoid, however, they are made worse by any of the following:

  • missing IBD medications or taking the incorrect dose
  • having an infection and/or taking antibiotics
  • having a fever greater than 38 degrees whilst on an immunosuppressant
  • being dehydrated or stressed

Diet and fluids during a flare

  • During a disease flare, it can help to avoid greasy, fried and spicy foods as these can cause increased gas and diarrhoea.
  • Limiting high fibre foods may be helpful as are small frequent meals.
  • It is important to encourage your child to continue to drink adequate fluids to avoid dehydration. It is recommended to offer small amounts of fluids often.
  • Ensure/Pediasure can also be given if previously tolerated and the patient has an existing supply of these at home.

Pain relief during a flare

  • The only pain relief recommended for children with IBD is paracetamol.
  • Give your child the dose that is recommended on the packaging for their age and weight.
  • Non-steroidal anti-inflammatories (NSAIDS) such as Nurofen, Ibuprofen and Aspirin can lead to inflammation and irritation of the bowel and should be avoided.
  • For anal soreness or painful bowel movements due to an anal fissure or fistula, bathe in warm salt water or use a sitz bath.

Flare prevention

Unfortunately, it is not always possible to prevent a disease flare however, the following tips are recommended to help you manage your disease.

  • See your doctor regularly.
  • If your child is on immunosuppression, please ensure they are reviewed in the clinic every 3-4 months.
  • Follow recommendations for IBD related tests and procedures including regular blood tests, drug levels and stool tests.
  • Monitor and track your disease – there are a variety of Apps available for download.
  • Exercise regularly – at least 30mins three times a week.
  • Reduce stress

IBD Management Plan

The following guidelines are adapted from CHOC (Children's Hospital Orange County) Guide for your IBD Road to Wellness, CHOC Children’s 1201 W. La Veta Avenue, Orange, CA 92868, USA

RED = STOP

Please call 9845 3999, or 9845 3997, or 9845 2580

Ongoing abdominal pain with severely restricted activity

  • Persistent blood in stools
  • Diarrhoea/increased movements >3 per day
  • Nausea or Vomiting not related to a virus
  • Joint pain not associated with trauma
  • Decreased appetite or fatigue lasting longer than 2 days 
  • Skin changes: rash or open draining sores anywhere on the body

Immunosuppressed and Fever higher than 38 degrees Celsius present directly to nearest Emergency Dept.

AMBER = SLOW DOWN and MONITOR

  • Occasional mild cramping or abdominal pain with mildly restricted activity
  • Mild increase in bowel frequency over 1-2 days
  • Increase in urgency to have bowel movement
  • First sight of blood in stools
  • Waking at night for a bowel movement
  • Change in appetite or energy lasting 1-2 days
  • Increase in stress levels

If symptoms persist or worsen make an IBD clinic appointment or visit your GP.  Initiate blood and stools tests.

GREEN = GREAT JOB, KEEP GOING!

  • take all your medications as prescribed by your doctor
  • attend IBD clinic every 4 months at a minimum
  • complete your routine blood tests and yearly reviewsan>
  • refill your prescriptions before they run out
  • look before you flush – check for blood or mucous in stools
  • eat a healthy well-balanced diet and exercise regularly
  • attend school
  • communicate early with family and your doctor when symptoms start.

When to go to Emergency

Please go immediately to your nearest emergency department for assessment if your child:

  • is on any form of immune-suppression and develops a fever greater than 38 degrees
  • has abdominal pain that is not relieved by any intervention
  • has profuse rectal bleeding or blood clots
  • develops new perianal fistula or swelling with a temperature greater than 38 degrees
  • has extensive bloating and pain, dark green vomit or unable to pass stool for more than 48 hours

Investigations for IBD patients experiencing a flare

The following investigations are recommended for any IBD patient experiencing a flare:

  • blood tests: full blood count, electrolytes, urea, creatinine, calcium, magnesium, phosphorus, liver function tests, CRP and ESR iron studies, azathioprine metabolites (if on this medication)
  • stool tests: faecal calprotectin, faecal microscopy, faecal culture, PCR and sensitivity, faecal c.difficile PCR

if these are completed by patient’s GP please fax the results to 98453970 or email to SCHN-CHW-IBDService@health.nsw.gov.au

Resources

For information on IBD: Crohn's and Colitis: https://www.crohnsandcolitis.com.au