Life with IBD

Nik’s Story

When he was first diagnosed with ulcerative colitis 12 years ago, Nik remembers turning to the Internet, where he says, “I only saw horror stories. It was really hard to find stories I could connect with.”

Nik was a 34-year-old married father of two young children living and working in Great Britain when he first noticed blood in his stool. He didn’t have the healthiest lifestyle at the time — he was under stress, travelling for work and rarely exercising. With an impending move to Vancouver, he had put off seeing a doctor. For months he didn’t even tell his wife, a nurse, about his symptoms.

Once they moved to Canada, Nik made it a priority to find a GP. The doctor referred him to a gastroenterologist who diagnosed his ulcerative colitis. Since then, Nik and his medical team have been trying to find the medication that will finally put his IBD into remission.

He first tried prednisone, which took the symptoms away but gave him untenable side effects that included loss of vision, anxiety and the shakes. The biologic drugs Remicade and Simponi helped, but Nik still had to take oral drugs and required frequent “soulless and time-consuming steroid enemas.”

Over the years living with cramping, blood and mucus in his stool, and urgency (six to 10 times/day, often with little notice), Nik had gradually rearranged his life to accommodate IBD. He worked from home, “a godsend for this disease as long as I’m not caught in the middle of a phone call with a client.” He installed a rowing machine so he could exercise in a location with quick access to a bathroom. If he went out, he woke early so that he could eat well in advance and go to the bathroom a number of times before leaving. Nik didn’t eat or drink when he was out and got in the habit of carrying a spare pair of boxers.

The soccer and running is a bit of a f-you to the disease.

Nevertheless, Nik has not let ulcerative colitis get in the way of his life. He got involved coaching his kids in soccer and joined the Running Room, completing numerous half and full marathons. In 2009 he ran a 100-km ultra marathon. “The soccer and running is a bit of a f-you to the disease,” he said.

His wife, who works as a nurse at the Pacific Gastroenterology clinic in Vancouver, has always been supportive. His kids, now teenagers, have also been good about his IBD: “They turn a blind eye when I have an accident and don’t complain when we have to leave somewhere suddenly.”

Thankfully, biologics have helped in treating Nik’s disease. These drugs, produced in living cells, work by interrupting the inflammatory process and are useful in the treatment of IBD. Over the past year, Nik has started on infusions of a new biologic, Entyvio, and life has taken an even more positive turn. The jury’s still out as to whether he’s in full remission, but at this point Nik doesn’t need any other drugs and has only had one recurrence of symptoms. “At first I couldn’t believe how well it worked,” he said.

Nik has advice for anyone newly diagnosed: “This disease isn’t something you did. Find whatever works for you,” he says. “Although you can never get rid of it, and it will affect your lifestyle, it’s not as bad as it sounds at first.”

He says surviving a potentially life-threatening brain hemorrhage two years prior to developing IBD put his ulcerative colitis into perspective.

Nik is enthusiastic about the proposed IBD Centre of BC. He likes the idea of having a team of health-care professionals who all understand IBD in one place. “It would be great not to have to explain it all the time,” he said, adding, “I think it would be important to have a mental-health person there, too. It would be good to have people to talk to.”

Our goal is to be open and providing much-needed IBD patient care by the end of 2018. For more information, please send an email to info@ibdcentrebc.ca