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There are two main types of this extremely debilitating and sometimes life-threatening condition.
The first is ulcerative colitis (UC), an inflammation or swelling of the colon (large bowel) tending to cause ulcers in either the colon or the anus.
The other is Crohn’s disease (CD), where the inflammation can occur anywhere from the mouth to the anus but is most common in the small intestine and/or colon. In 10-15% of cases, it is hard to decide which disease of the two it is.
Inflammation is the body’s natural response to any area of damage or infection, in which blood flow to the affected area is greatly increased, causing it to become painful, swollen and red. Symptoms of IBD are pain, urgent (and often bloody) diarrhoea, continual tiredness, bowel incontinence and (with CD) weight loss.
There are up to 300,000 sufferers in the UK from these conditions.
IBD is primarily a disease of the young: most cases are diagnosed when the patient is between 10 and 35 years. The disease is becoming more common, and a child in secondary school with IBD is unlikely to be the only one in their school.
The cause or causes of both these diseases are at present unknown and there is currently no cure. IBD is also difficult to manage. Treatment is usually with drugs, including steroids, to control or reduce the inflammation, which works in most cases. Indeed, steroids have greatly reduced death rates. However the drugs do not always work long-term, and about 3 in 4 people with CD will eventually need surgery, as will 1 in 4 of those with UC.
IBD is a lifelong illness. The severity of the symptoms outlined above fluctuates unpredictably over time. Most patients remain under hospital follow-up. When sufferers experience a “flare-up” between intervals of remission or reduced symptoms they will need urgent consultation with their doctor or hospital admission.
Around 1 in 20 patients experience a severe form of the disease which completely dominates their life. They may have to postpone or even give up study or work. At its worst IBD can entirely disrupt normal family, social and working life, imposing enormous personal and economic stresses on the sufferer and their family.
IBD is expensive. Extraordinarily, the total lifetime care cost of an IBD patient is comparable to that of a cancer or coronary heart disease patient. The cost of IBD to the NHS in 2000 was £500 million (or over £2,700 per patient). Of this sum about £150 million (30%) was spent on just 2% of patients.