The Mystery of Inflammatory Bowel Disease

Inflammatory bowel disease or IBD literally means “inflammation of the bowel”. The term IBD actually refers to a group of diseases, specifically Crohn’s disease (CD) and ulcerative colitis (UC). Under normal circumstances, inflammation is the body’s normal and necessary response to infection or injury. Typically, redness, heat, swelling and pain accompany the response whether the “attack” is located in a cut in your skin or an organ in your abdomen. For someone with IBD, inflammation of the gut becomes a chronic, or lifelong, state. Throughout life, there are episodes of flare-ups, and periods where the symptoms of the disease become quiescent (known as remissions).

Fast Facts on Crohn’s disease and ulcerative colitis The following table provides some fast facts on the differences between CD and UC. For more information, please go to our webpage on Crohn’s disease, as well as our webpage on ulcerative colitis.

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Crohn’s disease Ulcerative colitis Can be found anywhere in the GI tract from mouth to anus Located in the colon, usually  beginning at the rectum and spreading upwards to the cecum Inflammation can penetrate all layers of the intestinal wall, from inner to outer Inflammation invades the innermost lining of the intestinal wall only Patches of inflammation can be scattered throughout the GI tract, interspersed with healthy tissue (called skip lesions or cobblestoning) Inflammation is a continuous stretch within the colon with no patchy pattern People may experience fairly continuous abdominal pain, mild during remission phases but severe during flare-ups There is usually no abdominal pain during remission. During acute periods, pain tends to be intermittent and coincidental with bowel movements Perianal problems such as fistulas, anal fissures and skin tags can develop Perianal problems are not as common Surgery may be necessary to relieve conditions that are not responding to medication and other treatments. This will not “cure” CD Surgery may be necessary and if resection of the colon is done, the patient is effectively “cured” of UC.

The symptoms for both CD and UC can be similar. People with the disease may experience:

• Abdominal pain, cramping
• Diarrhea (bloody stools with UC)
• Nausea and vomiting
• Diminished appetite and weight loss
• Fever
• Anemia
• Fatigue

What causes IBD?

That is the still unanswered question and the answer remains a mystery. The cause of IBD is unknown. Researchers and the medical community are working hard to uncover the answers, but to date, we still do not know the actual cause of these diseases that afflict over 200,000 Canadians. That is not to say there are no answers. In fact, there is strong evidence that IBD develops in genetically predisposed individuals who are exposed to environmental factors that trigger the illness. In fact, the Crohn’s and Colitis Foundation of Canada (CCFC) is funding the Genetics, Environmental and Microbial (GEM) Project. This $5.5 million project will span six years and 5,000 subjects. It is recruiting the healthy children and siblings of people with Crohn’s disease to find clues to the genetic, environmental and microbial factors that may play a part in causing the disease. Click on our  GEM website for more information.

Who gets IBD?
IBD has no regard for age, gender or race but there is evidence that people of Ashkenazi (European) Jewish descent have a higher rate of IBD than any other group. Interestingly, IBD also appears to be more prevalent in North America and northern Europe, with Canada having among the highest incidence rates of IBD in the world.

People tend to be diagnosed with IBD between the ages of 15 to 25 or from 45 to 55.

IBD versus IBS
Inflammatory Bowel Disease (IBD) is often confused with Irritable Bowel Syndrome (IBS). Both have similar symptoms and similar names, but they are entirely different illnesses.

IBD is a chronic disease, characterized by inflammation in the GI tract. Depending upon whether a person has CD or UC, the location of the inflammation can be anywhere from mouth to anus.

On the other hand, IBS does not exhibit inflammation. Although the exact cause of IBS is not known, it is speculated that changes in bowel function or the way the brain senses what is going on in the bowel contribute to the symptoms.

In both cases, abdominal pain, cramping, diarrhea and nausea can occur.

The Burden of IBD in Canada
In 2008, CCFC commissioned a report titled “The Burden of Inflammatory Bowel Disease in Canada”. This report updated the prevalence, estimates and calculated the financial costs of IBD in Canada in 2008. Canada has among the highest reported prevalence rates of IBD in the world; over 200,000 Canadians have IBD and 9,200 new cases are diagnosed every year.

IBD is about as common as Type 1 diabetes and is three times more common than multiple sclerosis and HIV. From an economic standpoint IBD costs, both direct and indirect, are conservatively estimated at $1.8 billion per year. The emotional costs, impossible to quantify in dollars and cents, are clearly reflected in lower quality of life indicators.

With these huge impacts on individuals and our society, why don’t we hear people talking about IBD? Other diseases seem to have vocal celebrity champions, walk-a-thons, emotional pleas on TV – why is no one talking about IBD?

Until recently, the social stigma of having a “bowel disease” meant that people with IBD preferred to stay private about their health issues.

But in fact, the desire to stay private about bowel problems means that IBD has been a “closet” disease. Only those with IBD, or who have loved ones with it, have been familiar with the disease and the challenges posed by its presence.

But that time has come to an end. CCFC believes it is time for people to talk openly about their Crohn’s disease and ulcerative colitis. It is time to shed the burdens of embarrassment and silence and speak openly about IBD. It is time for us to speak out and together, find the cure.