More than 200,000 Canadians (about one in 160) suffer from inflammatory bowel disease (IBD) and November is Crohn’s and Colitis Awareness Month in Canada.
Crohn’s disease and ulcerative colitis are two forms of IBD; distinct yet similar conditions in which intestinal bowel tissue becomes inflamed, develops sores and/or bleeds. Other symptoms can include urgent and unexpected diarrhoea, abdominal pain, cramping and fatigue. There is no cure, the cause is not understood and there’s little public awareness or understanding of the conditions.
IBD is more common than MS or HIV and about as common as epilepsy or Type 1 diabetes.
“We need more awareness,” says Red Deer’s Sonya Gentner. “I wish more people were aware of this disease.”
Her 10-year-old daughter, Taylor, has indeterminate ulcerative colitis and was diagnosed at the age of three after recovering from a terrible stomach virus at the age of two.
“It can cut through every layer of your intestines. If one paper cut is painful think of it as having a thousand paper cuts in your intestines. And you don’t know how it will proceed. The condition can be genetic, environmental or microbial. Your immune system goes into hyperactivity and starts attacking itself.”
In her daughter’s case she says it’s left her bowels and gone into her joints, another painful condition, requiring cortisone shots.
“Going to the bathroom is a problem, we know every bathroom in Red Deer,” says Gentner. “A lot of people who have it suffer internally and don’t want to talk about it. They are also absent from work a lot.”
Understandably, those who suffer from it don’t want to go out in public much because of the unpredictable nature of the condition and fear of having an embarrassing accident on the way to the nearest bathroom.
In an attempt to allow sufferers from this disease to get out more often the Crohn’s and Colitis Foundation of Canada (CCFC) has started a new program called Can’t Wait which provides information via GPS systems and cell phones to help people find the nearest public bathroom in a hurry. Gentner says the Can’t Wait program is an excellent idea because bathroom accessibility is always a problem.
The CCFC surveyed almost 1,400 IBD sufferers last summer and these were some of the results:
• 78% of English-speaking and 75% of French-speaking respondents have chosen to stay home during a flare-up for fear of not being able to access a bathroom.
• 72% of English-speaking and 82% of French-speaking respondents restricted their travel for fear of not being able to access a bathroom.
• 75% of English-speaking and 72% of French-speaking respondents reported having been embarrassed or humiliated to ask to use bathroom facilities.
• 44% of English and 39% of French respondents have had an accident in public due to bathroom inaccessibility.