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.