Ulcerative colitis: Do you know what it is? You should!

Ulcerative colitis (UC) is a debilitating condition that affects a considerable number of Australians and is associated with reduced quality of life and significant direct and indirect costs. Being aware of this condition and how it might affect you is important for reducing the impact it has in the long term. Timely diagnosis enables an individualised treatment plan to be developed, which can alleviate the symptoms of active disease, improve your quality of life and prevent relapses or disease progression which might require hospitalisation.

Diagnosis is based on clinical symptoms as well as the findings of endoscopy (looking at the walls of your colon with a camera on a thin tube) and biopsy (taking a tissue sample from your colon). However, ulcerative colitis mimics the symptoms of other gastrointestinal conditions, particularly Crohn’s disease, which can complicate the diagnosis. Lack of awareness of the condition also contributes to missed and delayed diagnoses, which in turn increase the physical and financial burden of ulcerative colitis. So pay attention to your bowel, and if you have symptoms that might indicate ulcerative colitis, make an appointment to see your doctor straight away.

Dr Miles Sparrow, Consulting Gastroenterologist at the Alfred Hospital in Victoria, says that we have to become more comfortable talking about gastrointestinal problems.

“One of the main barriers to awareness of ulcerative colitis in Australia is the taboo nature of the primary symptom: bloody diarrhoea. We need to change people’s reluctance to talk about symptoms such as bloody diarrhoea so that ulcerative colitis can be diagnosed and treated effectively,” said Dr Sparrow.

Already common and becoming more so

Ulcerative colitis is a form of inflammatory bowel disease (IBD) that causes symptoms such as rectal bleeding and faecal urgency. The condition affects 16,000–33,000 Australians at any given time, and over 800 new cases are diagnosed each year. Ulcerative colitis is more prevalent in Australia than epilepsy, multiple sclerosis and inflammatory heart disease. According to Dr Sparrow, it is amazing that IBD isn’t more widely recognised.

“Inflammatory bowel diseases affect about as many people in Australia as diabetes and a significant proportion of these are young and active,” he said.

In fact, about 10% of ulcerative colitis cases are recorded in individuals less than 18 years old and the incidence in children and adults appears to be increasing. It is estimated that prevalence of the condition will increase by 25% by 2020, at which time 41,000 Australians are expected to be affected by ulcerative colitis of varying severities.

You really want to diagnose this disease early!

The severity of the condition can be determined based on symptoms and other findings and may be classified as:

• Mild (also called proctitis): < 4 stools daily (with or without blood), and no evidence of other toxic effects (e.g. fever, tachycardia, anaemia or increased erythrocyte sedimentation);
• Moderate (also termed left-sided colitis): > 4 stools daily with minimal additional toxicity;
• Severe (also termed extensive): > 6 bloody stools per day with signs of additional toxicity;
• Fulminant (also termed pancolitis): > 10 stool per day, continuous rectal bleeding needing blood transfusion, abdominal tenderness and distension, systemic toxicity and dilated colon.

It’s pretty obvious that having ulcerative colitis diagnosed and treated at the mild or moderate stage is far better than waiting and experiencing the more severe symptoms of the disease.

However, these symptoms are also characteristics of other gastrointestinal conditions, particularly Crohn’s disease, which your doctor will consider before diagnosing UC. Colonoscopy (a type of endoscopy specifically for your colon) and biopsies are required to diagnose ulcerative colitis and exclude other conditions. A “she’ll be right” attitude to gastrointestinal problems is a dangerous approach to take and you should see your GP sooner rather than later.

“People need to be made aware that if they have diarrhoea for longer than two weeks, they probably do not have infectious gastroenteritis; they may instead have an inflammatory bowel disease. It is also important to understand that there is a significantly increased risk of bowel cancer for people who have ulcerative colitis,” said Dr Sparrow.

A severely debilitating, lifelong condition

Ulcerative colitis is a severely debilitating condition.

“Physical symptoms such as fatigue, abdominal pain and bloody diarrhoea all take their toll and can lead to absenteeism and depression,” according to Dr Sparrow.

Ulcerative colitis is associated with greater disability and loss of life than chronic back pain, epilepsy and mental retardation, amongst other conditions. It is responsible for reduced economic productivity and quality of life as well as increased health care expenses.

However, diagnosing the disease early can reduce the impact UC will have on your life. Among individuals with mild disease, 66% will achieve remission with medication (most commonly with drugs called aminosalicylates) and 80% who keep taking their medication will remain symptom-free. Approximately 5–10% of patients with mild disease will go on to develop a more severe form of ulcerative colitis.

Moderate disease is also typically treated with medication such as aminosalicylates. Severe disease, however, usually requires hospitalisation and may involve a range of treatments. These include blood transfusion (to replace blood lost through rectal haemorrhage), enteral nutrition (feeding through a tube) and alternate medications that may have more serious side effects than aminosalicylates.

Fulminant UC does not respond to any of the abovementioned treatments and requires surgical removal of the entire or part of the colon (total or partial colectomy). This treatment is needed by about one third of patients who have had UC for more than 20 years, but even this treatment isn’t successful all the time. In many cases, UC can reoccur or the individual will need ongoing medication to control the symptoms, both of which are associated with considerable cost.

Costly to you and the health system

Ulcerative colitis is associated with significant direct and indirect costs; in 2005, the cost of UC in Australia was $258 million. Lost productivity (e.g. absenteeism, early retirement, educational interruption) accounted for approximately $138 million, while an estimated $34.1 million was directed to health expenditures for UC. Approximately half of that amount was used in the provision of hospital services, which are needed for patients with severe acute disease. Despite this, ulcerative colitis does not attract a high level of federal funding.

“This means there are less people and resources dedicated to the study and treatment of the condition in Australia and this subsequently affects awareness of ulcerative colitis amongst health professionals,” said Dr Sparrow.

Diagnose, treat and keep treating

These costs, as well as the debilitation experienced by individuals with UC, could be considerably reduced with improved diagnosis and treatment. In the past you had two options for treatment: rectal suppositories and enemas, or an oral medication regimen requiring multiple doses per day. Not surprisingly, neither were popular and a lot of UC sufferers found it hard to keep taking their medication, particularly when the disease wasn’t active and they didn’t have symptoms. Fortunately, new formulations of aminosalicylate oral medications are now available that allow once-daily dosing and are as effective as suppositories and enemas, making it much easier to keep UC symptoms at bay.

“The once-daily formulations make it easier for patients to keep taking their medication once remission has been achieved and this helps to maintain remission,” said Dr Sparrow.

Lack of public and professional awareness of UC impairs effective diagnosis and treatment and contributes to missed diagnoses and poor outcomes. Improving diagnosis and treatment has great potential to improve the lives of people living with UC.

Before reading this article, did you know what ulcerative colitis was?  And now that you’ve learnt how common and severe UC is, are you surprised that you didn’t know what it was? With awareness of UC, and the knowledge that effective treatment is available, you can take action if this disease should ever affect you or someone close to you.

More information

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