Breaking the silence on a debilitating disease.

By Professor Jane Andrews, Royal Adelaide Hospital

Most people want to feel ‘normal.’ For people living with ulcerative colitis, a chronic and potentially debilitating inflammatory bowel disease (IBD), ‘normal’ can often mean living with diarrhoea & urgency, abdominal pain, fatigue and needing to know where the closest toilet is at all times, and, for some, even carrying spare underwear in case they don’t make it.

For some, it might mean living with an ileostomy bag attached to the outside of their abdomen.

Ulcerative colitis causes inflammation and ulceration of the lining of the large bowel – or colon, which can cause diarrhoea, bloody stools, abdominal pain, chronic fatigue, fever and weight loss.

As a gastroenterologist specialising in inflammatory bowel disease, I encounter people with ulcerative colitis, many of whom are young and some who are dramatically affected by these symptoms.

Severe ulcerative colitis – when the symptoms necessitate admission to hospital for intravenous medication – is associated with poor quality of life due to the time spent in hospital and also the time at home recovering in addition to possible medication side effects when high dose steroids are needed. Hospitalisation means time away from work, friends and family, which can disrupt a person’s relationships, career and often forcing otherwise healthy people to put their lives on hold.

The cause of ulcerative colitis is unknown, making prevention impossible.

As UC predominantly affects young people (most often onset is between 15-30 years of age) they are the group most often hospitalised with the acute, severe form of the condition, and the consequences can be severe.  In cases where medical treatment fails, surgery to remove the colon may be the only option.

Ulcerative colitis has a peak prevalence in younger adults, who are also within their reproductive years. Forming intimate relationships, body image, and sexuality are particularly important at this stage of life and some studies have shown that gender, the need for surgery and the severity of disease are linked to negative perceptions of body image, libido and sexual activity. Therefore, we try very hard to ensure surgery is not needed. This means getting people into remission and then keeping them there with long term treatment (medications).

The good news however, is that with good medical care and the right treatment, most people affected by UC can be well most of the time and live a normal, active life. One of the biggest issues affecting people’s well-being is finding a maintenance therapy which agrees with them and which is also effective at keeping their UC in remission. A common problem for anyone affected by a chronic (life-long) condition, is the need for long term medications. It seems that many people either don’t understand the need for ongoing treatment, or simply forget to take it as often as advised.

We have found that since starting out IBD Service and being able to give people accurate advice and easy access to information through our help-line that patients’ lives have improved enormously. People previously debilitated by symptoms have been able to go into remission and back to work after being on the disability support pension; whilst others have become well enough to start a family – when that had seemed impossible in the past!

Options to treat acute severe ulcerative colitis have recently improved with access to infliximab on the Pharmaceutical Benefits Scheme.  Hopefully we will now be able to get more people into remission and onto maintenance therapy to keep them there. Infliximab “rescue” treatment for acute severe disease is a welcome alternative to surgery, which used to be the only option available to people who had not responded to high dose steroid therapy.

For many patients, medical treatment is able to prevent the need for surgery or delay it until a time in patients’ lives when they are ready to deal with the consequences.  Treatment may also help to remove a barrier that has prevented them from forming relationships, having children and enjoying sex.  Our aim with therapy is to get rid of their symptoms so they can feel ‘normal’ again.

With approximately 2,540 new cases of ulcerative colitis diagnosed every year, it is important to continue research that investigates the cause of the condition, as well as new treatments that can help alleviate quality of life issues that people with ulcerative colitis may experience.

If you notice sudden changes in your body, especially if you have diarrhoea with blood in it, or which wakes you from sleep at night, it is important to see a doctor for assessment.

Australia has the highest rate of ulcerative colitis in Asia-Pacific and figures are increasing year-on-year. For more information or support for people with ulcerative colitis, visit www.crohnsandcolitis.com.au.

Professor Jane Andrews is the Head of IBD Service & Education, Royal Adelaide Hospital and is appointed also in the School of Medicine at the University of Adelaide. She is also the current chair of the Australian IBD Association and on the council of the Gastroenterological Society of Australia.