Inflammatory Bowel Disease, or IBD, can be difficult for people living with the disease to talk about, in some cases because it invokes feelings of embarrassment and in others, because it brings back difficult memories. For John MacKenzie of Baddeck, N.S., it’s the latter.
He was diagnosed with Crohn’s Disease at the age of nine, a common form of IBD which plagued him with violent cramps and pains if ever he dared to enjoy a meal, sending him unceremoniously to the washroom at a moment’s notice. His immune system had begun attacking his intestinal tract, he would later learn, causing him to fear his dinner. As a young boy, he began losing weight.
“I was finding it hard to keep up an appetite,” he says. “It’s a long wait before you get comfortable sitting down and eating a big meal again.”
Today John is going on 30, and in the last two decades he’s been through a whirlwind of treatments prescribed by physicians of the QEII Health Sciences Centre and IWK. For milder forms of IBD these treatments would help restore some quality of life. But in cases as severe as John’s, the efforts of these hospitals did nothing less than save his life.
“I owe those people a lot,” he says.
Dr. Jennifer Jones is a gastroenterologist at the QEII and is team lead of the Nova Scotia Collaborative IBD Program, a union of disciplines founded in 2014 to treat this disease’s innumerable aspects and improve outcomes. The team consists of nurse practitioners, gastroenterologists, IBD specialists, nutritionists, a psychologist and even a pharmacist into its ranks, who work together to develop individual treatments for the 2,000 to 3,000 people who visit the clinic each year.
“In the most severe cases, people can die from inflammatory bowel disease,” says Dr. Jones. “It’s very important they get timely treatment.”
She says inflammation inside and outside of the intestinal tract — this disease’s defining characteristic — can be managed with medicines, moderating the body’s wayward immune system. What these medicines can’t treat are the side-effects of this inflammation, the deep ulcerations, infections and buildups of scar tissue which cause blockages. For these, the only remedy is surgery.
John himself has endured three surgeries thus far, the most recent in 2015, removing sections of troublesome bowel in case his condition deteriorates.
He’s tried as many diets as medicines over the years and has found the most relief in healthy eating, avoiding processed foods wherever possible and giving his lessened intestines enough to work with. He’s running out of guts, as he put it, and needs to be smart with what’s left.
Dr. Jones says that IBD is a chronic condition for which there is no cure, and while progress has been made in understanding risk factors, its exact cause is as yet unclear. This makes her ongoing research into the disease of some importance to residents of Nova Scotia. One out of every 150 Canadians suffers from some form of IBD, the highest rates in the world, and of all Canadian provinces Nova Scotia has the highest rates, Dr. Jones says.
One of IBD’s most devastating and indirect consequences is the inability to make plans — for an upcoming weekend or for life at large, says Dr. Jones. Because the disease tends to develop before the age of 30 it can impact someone’s educational path, career aspirations and even family planning. While John hasn’t let Crohn’s steer him astray, he’s certainly dealt with his fair share of hurdles.
“It’s stopped me in my tracks sometimes,” he says. “When it strikes it can be really disabling. You can’t make any plans.”
But things are looking up for him. Recovery from his last surgery has been slow, but with time, newer and better medication, and the birth of his son last May, his anxieties have lessened considerably.
“I’m feeling on top of the world since my little fella was born,” John says. “I think it’s very important to stay grateful and feel positive. You don’t want to obsess on the negative side of things.”