Inflammatory bowel disease (IBD) care in Sydney

What inflammatory bowel disease is

Inflammatory bowel disease, or IBD, is a group of conditions in which the immune system causes ongoing inflammation in the bowel. It is not the same as irritable bowel syndrome, which causes real symptoms but no inflammation or damage. Crohn's & Colitis Australia's 2025 State of the Nation report puts the number of Australians living with inflammatory bowel disease at 179,420, and it is most often diagnosed between the teens and the thirties, though it can start at any age.

• Crohn's disease can affect any part of the gut from mouth to anus, most often the end of the small bowel and the colon. The inflammation runs through the full thickness of the bowel wall, which is why it can cause narrowing (strictures) and abnormal connections (fistulas), including around the anus.
• Ulcerative colitis affects only the large bowel, always starting at the rectum and extending a variable distance up the colon. The inflammation is limited to the lining.
• Microscopic colitis causes persistent watery diarrhoea. The bowel looks normal at colonoscopy and the diagnosis is made on biopsies, which is why biopsies are taken even when the lining looks healthy.

What are the symptoms, and when should you be seen

The common symptoms are diarrhoea lasting more than a few weeks, blood or mucus in the stool, urgency, abdominal pain, weight loss, tiredness and iron deficiency. Crohn's disease can also cause painful swellings or discharge near the anus. Some people have joint pain, skin rashes or eye inflammation alongside the bowel symptoms.

None of these is specific to IBD, and most people with one of them do not have it. A GP will usually start with blood tests and a stool test called faecal calprotectin, which measures inflammation in the bowel. A raised calprotectin, blood in the stool, weight loss or iron deficiency are the findings that make a specialist referral and a colonoscopy worthwhile.

How it is diagnosed

The diagnosis is made by putting several pieces together rather than from any single test.

• Colonoscopy with biopsies shows where the inflammation is, how severe it is and what kind it is.
• Blood and stool tests, including faecal calprotectin, measure inflammation and check for infection, anaemia and nutritional problems.
• Imaging of the small bowel, usually MRI or intestinal ultrasound, shows parts of the bowel a colonoscope cannot reach. Intestinal ultrasound is done in the clinic, needs no preparation or radiation and can be repeated as often as needed. The Concord and Macquarie IBD research group, which A/Prof Kariyawasam is part of, is looking into how ultrasound measurements track disease activity.
• Gastroscopy is sometimes added, particularly in suspected Crohn's disease.

How inflammatory bowel disease is treated

The aim of modern treatment is healing of the bowel lining, which clinicians call mucosal healing, not only relief of symptoms. Symptoms and inflammation do not always move together, and inflammation left untreated is what leads over years to strictures, surgery and, in colitis, a higher risk of bowel cancer.

Weight matters more in inflammatory bowel disease than it is usually given credit for, in both directions, and weight management is part of care for some patients rather than a separate subject.

Which treatment suits depends on the type of disease, where it is, how active it is, what has been tried before and the person's own priorities, including pregnancy plans. The main groups are:

• Aminosalicylates (5-ASA), mainly for mild to moderate ulcerative colitis, taken by mouth, rectally or both.
• Corticosteroids, for bringing a flare under control. They work quickly but are not a long-term treatment because of their side effects.
• Immunomodulators, an older group of tablets and injections that maintain remission and are sometimes combined with biologics. A/Prof Kariyawasam's PhD was on thiopurine therapy in IBD.
• Biologic and small-molecule therapies, which target specific parts of the immune response. Several are available on the PBS for moderate to severe disease. They are given by infusion, by injection at home or as tablets, depending on the drug.
• Nutritional therapy, particularly for Crohn's disease. Exclusive enteral nutrition (EEN) replaces normal food with a liquid formula for a set period, usually six to eight weeks, and can settle inflammation. The Crohn's Disease Exclusion Diet (CDED), combined with partial enteral nutrition, is a more flexible alternative that uses whole foods. Beyond these, improving the overall quality of the diet is part of long-term care, ideally with a dietitian experienced in IBD.
• Surgery, which remains the right answer for some people, particularly with complex fistulas or strictures that cannot be managed endoscopically. Many strictures can be stretched at colonoscopy instead, with balloon dilatation. Care is shared with colorectal surgeons when it is needed.

IBD care works best as a team. Alongside the gastroenterologist, that can include an IBD nurse, a dietitian, a psychologist and a colorectal surgeon.

Access to newer medicines in Australia lags behind many other countries because of how they are evaluated and priced, and A/Prof Kariyawasam has spoken publicly about the effect this has on patients.

Anxiety, low mood and stress

Living with IBD takes a psychological toll, and it is common. In a national survey of 352 Australians with IBD during the COVID-19 pandemic, co-authored by A/Prof Kariyawasam, about 60 per cent met the criteria for at least moderate depression, anxiety or stress, and many had never been diagnosed. Younger people were more affected, and so were those without access to an IBD nurse or clear information about their condition.

The gut and brain are connected in both directions, through what is called the gut-brain axis, so stress and low mood can make bowel symptoms worse, and active disease can affect mood. For that reason, asking about mental health is part of every review, and support from a psychologist is part of treatment rather than an extra.

How it is monitored once you are well

Once the disease is controlled, follow-up is built around checking that it stays that way, ideally catching a relapse before it causes symptoms. That usually means regular blood tests, faecal calprotectin, drug levels for some treatments, intestinal ultrasound or MRI and periodic colonoscopy.

People who have had ulcerative colitis or Crohn's colitis affecting a substantial part of the colon for around eight years or more have a higher risk of bowel cancer and need surveillance colonoscopy at intervals set by the national guidelines. The interval depends on how much of the colon is involved, how active it has been and other risk factors.

The rest of life is part of the same conversation: vaccinations before and during treatment that affects the immune system, bone health, iron and vitamin levels, smoking, which worsens Crohn's disease, diet, mental health, work and travel.

Can you have a baby with inflammatory bowel disease

Most people with IBD have normal pregnancies. The single most important factor is that the disease is in remission at conception and stays that way, because active inflammation is a bigger risk to a pregnancy than most of the treatments used to control it. Many treatments are continued through pregnancy; a few need to be stopped well beforehand.

Planning ahead is worth a specific appointment, ideally before trying to conceive, so that treatment can be reviewed and the disease brought into remission first.

When is a second opinion worth getting

Second opinions are welcome, whether for a new diagnosis, disease that is not responding to treatment, a decision about surgery or questions about pregnancy. It helps to bring previous colonoscopy and pathology reports, imaging, recent blood and calprotectin results and a list of treatments tried with roughly when and for how long.

A/Prof Kariyawasam is a founding director of IBD Sydney, a not-for-profit organisation that provides education in IBD for clinicians, and holds a visiting appointment with the inflammatory bowel disease service at Concord Repatriation General Hospital.

Where inflammatory bowel disease is managed in Sydney

A/Prof Viraj Kariyawasam is a consultant gastroenterologist and hepatologist whose practice is focused on inflammatory bowel disease, with a PhD in the field. Crohn's disease, ulcerative colitis and microscopic colitis are managed at consultation in Norwest, Rouse Hill, Pennant Hills and Macquarie Park.

Endoscopy, including colonoscopy, is performed at Norwest Private Hospital, Macquarie University Hospital and Pennant Hills Day Surgery. A referral from your GP is needed for a consultation.