Actually, I’m not directly affected by inflammatory bowel disease (IBD), but my fiance was diagnosed with Crohn’s disease at the age of 16 and has been in remission since having intestinal resectioning surgery at 18. When we first started dating, I read everything I could on the topic, trying to inform myself as much as possible. What I learned was that Crohn’s and its related disease, the other IBD, colitis, are almost completely unpredictable in how they will affect people afflicted with them. Craig’s Crohn’s might flare up again tomorrow. It might flare up repeatedly over the course of his life. It might require future hospitalizations or surgeries. And it might not. He might live the rest of his life managing the on-going symptoms of Crohn’s in remission and never have another full-fledged relapse. There is a genetic component to Crohn’s and colitis—Craig’s paternal uncle has it—but researchers aren’t sure exatly what the link is.
Essentially, the disease occurs when a section of the digestive tract—any section, from mouth to anus—decides to attack itself (this classifies it as an auto-immune disease). It becomes inflamed and diseased, creates blockages, and doesn’t do what it’s supposed to do, such as absorb nutrients, which occurs in a normal intestine (where Crohn’s desease manifests in most people). Aggressive drug therapy is available, but if it doesn’t halt the progress of the disease, surgery is often used. After two years of drug therapy failed to work for him, Craig had was a resectioning of his small intestine, whereby the diseased portion of the intestine was removed and the remaining healthy parts linked together. If he ever relapses, he could need the surgery again. Sometimes, so much of the intestine is affected that it has to be removed altogether (colostomy). In patients with colitis, colostomy will cure the disease. There is no cure for Crohn’s disease. Symptoms vary widely, but typically affected people have restricted diets because of digestive difficulty, frequent diarrhea, and occasional bouts of other digestive problems. Symptoms are largely unpredictable—they can be “set off” for no apparent reason—although managing diet based on the person’s symptoms can help. There is no universal IBD diet. Some people cannot tolerate milk, others have to avoid gluten. Craig can’t digest fibre and therefore must avoid most vegetables, fruit, and whole grains.
The Crohn’s and Colitis Foundation of Canada has recently released a study on the Burden of IBD In Canada. Some of the most interesting points they found are:
• There are nearly 201 000 Canadians living with IBD (this likely means you know someone with it. I personally know four people who for sure have Crohn’s).
• People with IBD have a lower overall quality of life, hampered by symptoms that can only be managed, not cured.
• Canada has among the highest reported prevelance of IBD in the world. We don’t know why.
• Direct medical costs for people with IBD in Canada are over $700 million per year.
• Indirect costs, including loss of jobs days and unemployment due to illness, are over $1 billion per year.
• IBD is about three times more common than MS or HIV and about as common as Type 1 diabetes and epilepsy.
So why aren’t people more aware of it? Because there is a social stigma surrounding bowel disease. Because late and wrong diagnosis are prevelant among medical professionals. Because people with IBD are often diagnosed in high school or college and it’s hard to explain why you’re missing class or you have to go and spend 20 minutes in the bathroom at the bar while out on a date. Because people with IBD are afraid to ask their employers for open access to washroom breaks, for fear of explaining why.
This is why I volunteer for the CCFC. Because I’m marrying Craig, and his health is as important to me as my own, and I want research and knowledge to improve to the point that we can cure this disease and make sure our children don’t have it.
Any questions? Ask away!
