Winnipeg Free Press - PRINT EDITION

Cramping their style

It can be embarrassing to talk about, but for the one in 150 people with inflammatory bowel disease, No. 2 is No. 1 priority

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Most of us answer pretty promptly when nature calls. And we've all run the gut-wrenching race to the biffy during a bout of stomach flu, or after eating tainted food.

But for some people, it's as if their bowel were an air-raid siren. And they never know when a bomb might be about to drop.

"There have been times when the urgency has been so urgent that I didn't make it. And when you're a 40-year-old man, that's not OK," says Winnipegger John Iacozza, 42.

The University of Manitoba geography professor has Crohn's disease. He was diagnosed at age 23.

On a good day, he'll almost forget that he has it. On a bad day, anything Iacozza eats can irritate his digestive system and leave him dehydrated and fatigued. On a really bad day, he doesn't leave the house, and estimates he misses two or three days of work per term because of his condition.

For many of the estimated 250,000 Canadians with inflammatory bowel disease (IBD) -- the two main forms are Crohn's and ulcerative colitis (UC) -- venturing out in public can mean always scanning the environment to locate the nearest washroom, especially if the outing involves eating.

IBD is an umbrella term for chronic conditions that cause persistent or recurring inflammation of one or more parts of the gastrointestinal tract. The GI tract begins at the mouth and ends with the anus.

Symptoms vary, depending on the severity of the inflammation and where it occurs, but abdominal pain, cramping and frequent and urgent trips to the bathroom are the main ones. In severe cases, they can be debilitating, both physically and psychologically.

As Iacozza can attest, when you don't look sick, it can be hard to explain to someone on a warm and sunny weekend day why you don't want to leave the house.

"Who wants to talk about diarrhea? Nobody does. Even saying it is almost taboo," says the education co-ordinator for the Winnipeg Chapter of the Crohn's and Colitis Foundation of Canada.

Fred Saibil wants to talk about it -- and other bowel-related issues that make everyday life challenging, if not downright miserable, for one in 150 Canadians. Canada, in fact, has one of the highest IBD rates in the world.

Perhaps only a gastroenterologist can toss around terms like "bloody diarrhea" and "wet fart" so casually, but Saibil notes that the public is much more aware of and open about IBD than when he first set out to educate and empower patients more than 25 years ago.

The Toronto IBD expert and professor of medicine recently released a new book, Crohn's Disease and Ulcerative Colitis: Everything You Need to Know ($19.95), written specifically for lay people. Now in its third edition, the book covers everything from why people get IBD to how diet can make a difference, and the latest drug and treatment options.

Saibil, a gastroenterologist at Sunnybrook Health Sciences Centre, will be in Winnipeg on Thursday to give a free talk titled Self-Managment for the IBD Patient. It takes place at 7 p.m. at Canadian Mennonite University (500 Shaftesbury Blvd.). Attendees must register at www.isupportibd.ca.

The general public likely has a "skewed" view of IBD, Saibil says during a phone interview, because of a general reluctance to discuss anything bowel-related, and because it's such a broad umbrella term. Also, it's not a visible illness, so sufferers might not elicit any sympathy.

"Like with most chronic diseases, these diseases are on a spectrum," he says. "There are people with mild Crohn's disease or mild ulcerative colitis for whom it is literally a nuisance. Most of the time, those patients don't have to be on any treatment whatsoever, or only need treatment for a few weeks every few years.

"At the other end of the spectrum, these diseases are terrible."

In Crohn's disease, the inflammation can occur anywhere from the mouth to the anus. It's most commonly (45 per cent) found in the end of the ileum (the lower part of the small intestine) and the beginning of the colon.

With Crohn's, the entire thickness of the bowel wall, from the inner lining through the muscle layers to the outer lining, is inflamed. The main symptoms are crampy abdominal pain, diarrhea and weight loss.

Ulcerative colitis (UC), on the other hand, is confined to the inner lining of the colon (mucosa), and always involves the rectum. (The colon, of course, is a metre and a half long.) When inflamed, the surface of mucosa becomes raw and bleeds easily.

"It really looks like a bad scrape on your knee like when you fell on the sidewalk as a kid and got a whole bunch of little pinpoint areas of bleeding, and little bits of pus," Saibil says.

Ulcerative colitis typically manifests in "urgent and frequent trips to the toilet with passage of bloody, loose bowel movements." The blood results from the ulceration, or tears, in the colon lining.

IBD occurs with equal frequency in men and women. Onset is most common between ages 15 and 30, but it can develop in infancy and old age.

In the past, it was widely believed that there was a psychological component to IBD, that the diseases were brought on by chronic stress. While the jury's still out on whether stress can trigger a flareup, Saibil says researchers believe IBD is caused by a combination of genetics, germs and environmental factors.

"Asians don't get a lot of IBD -- when they're in Asia. It's different when they come to Canada," he says, adding the reason may be a change of diet and/or different bacteria in the food.

While up to 85 per cent of IBD patients will need medication at some point, Saibil says, there's a new class of drugs called "biologics" that can help control the conditions more effectively. Biologics, which are created from living organisms, are engineered to target specific proteins in the body that cause inflammation.

Unfortunately, they're expensive and can easily cost a patient $50,000 a year.

But overall, there's been a "major change in philosophy" in recent years when it comes to treating IBD, Saibil says. Rather than waiting until patients feel unwell to treat them, doctors can now actually heal the disease in some people.

Heal does not mean cure, Saibil notes, but continued treatment with biologics can keep the disease in remission.

The new approach has made "a huge difference," in the last decade or so, he says. Far fewer people require surgery or hospitalization.

"I've spoken to thousands of people in seven of the 10 provinces over the last 25 years, and I used to look out on a sea of gaunt people who looked like they just came out of a concentration camp," Saibil says. "Now, our treatments are so much better that when I look out over an audience, the IBD patients mostly look like everybody else. They may even need to lose weight."

carolin.vesely@freepress.mb.ca

Republished from the Winnipeg Free Press print edition May 28, 2013 D1

History

Updated on Tuesday, May 28, 2013 at 7:51 AM CDT: replaces photo, adds sidebar

May 31, 2013 at 10:45 AM: Clarifies implications of ulcerative colitis.

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