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

COVID -19 Changes to services

To protect the health of patients attending the Hospital the number of face-to-face clinic appointments has been reduced.  Patients who are well may be monitored from home via video Telehealth clinic, known as My Virtual Care

Gastroenterological Society of Australia (GESA)

Contacting nursing staff during the Pandemic

Due to staffing shortage, the best way to contact the IBD nurse is by email SCHN-CHW-IBDService@health.nsw.gov.au.  You will receive a response in due course during business hours (9am-4pm). Nursing education will be delivered via telehealth, webinar or over the phone.

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 be taken to the nearest Emergency Dept.

 

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

 

RED = Present to the nearest Emergency Department

Present to your nearest Emergency Department for assessment for

  • Abdominal pain that is not relieved by any intervention
  • Passing large amounts of blood with stools or blood clots multiples times a day
  • New perianal fistula or swelling with temperature greater than 38 degrees Celsius
  • Extensive bloating and pain with either dark green vomit and/or inability to pass stool for more than 48 hours
  • Dehydration 
  • Fever greater than 38 degrees whilst on an immunosuppressant or prednisone

AMBER = CALL Hospital Switchboard on 9845.0000

Weekdays from 9.00am to 4.00pm call Switchboard and ask for Gastro Registrar; Weekends or after 4pm wait to call until next business day or go to ED if concerned

  • Ongoing abdominal pain with severely restricted activity
  • Persistent blood in stools
  • Diarrhoea/Increased bowel movements >6 per day
  • Nausea or vomiting not related to a virus
  • Joint pain affecting mobility
  • Decreased appetite or fatigue lasting longer than two days
  • Skin changes: rash or open draining sores anywhere on the body

Immunosuppressed and Fever greater than 38oC present to nearest Emergency Dept

YELLOW = MONITOR

Record your symptoms.  If symptoms persist or worsen make an IBD Clinic appointment or visit your GP.  Initiate blood and stool tests.

  • Occasional mild cramping or abdominal pain with mildly restricted activity
  • Mild increase in bowel frequency over 1 to 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 to 2 days
  • Increase in stress levels

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 reviews
  • refill your prescriptions before they run out
  • look before you flush – check for blood or mucus in stools
  • eat a healthy well-balanced diet and exercise regularly
  • attend school
  • communicate early with family and your doctor when symptoms start.

How to book an IBD clinic appointment

If directed on the IBD Flare Management Plan (YELLOW) to book an IBD clinic appointment please email:    SCHN-CHW-Gastroenterology@health.nsw.gov.au

Ensure to state you have followed the Flare Management Plan and need an appointment so that the next available appointment can be provided.  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.

·         

What is an IBD flare?

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.
  • Avoid using non-steroidal anti-inflammatories (NSAIDS) such as Nurofen, Ibuprofen and Aspirin can lead to inflammation and irritation of the bowel
  • 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 Specialist regularly. It is the responsibility of parents/carers to ensure their child is reviewed in the IBD clinic every 3-4 months, especially if they are on immunosuppression medication
  • 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 

Initial investigations for IBD patients experiencing a flare

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

  • blood tests: full blood count, electrolytes/urea/creatinine, calcium, magnesium, phosphorus, liver function tests, CRP and ESR, iron studies and 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 locally by the patient’s GP please ensure a copy of the results is faxed to 98453970  or emailed to schn-chw-gastroreferrals@health.nsw.gov.au     

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 clinicians

  • Staff specialists: Dr Shoma Dutt, Dr Annabel Magoffin, Dr Kunal Thacker, Dr Susan Siew, Dr Ted O'Loughlin, Dr Juliana Puppi, Dr Michael Stormon
  • 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)

Resources

Crohn's and Colitis website: https://www.crohnsandcolitis.com.au

Inflammatory Bowel Disease Flare Management Plan 2022: ibd_flare_management_plan_2022.pdf