Life with IBD

Sam’s Story

A 23-year-old university student living with Crohn’s disease a long way from the support of his family back east, Sam is looking forward to the opening of The IBC Centre of BC.

“I hope this centre makes my life easier,” says Sam who has regular, separate appointments with surgeons, gastroenterologists, nurse practitioners and at infusion clinics. “None of those four things interact with each other, but all of those health-care professionals want to know what happened in all of my appointments,” explains Sam. “In my ideal world everyone would talk with each other and they would all know what I’ve been doing for my Crohn’s for the past three months.”

In my ideal world everyone would talk with each other and they would all know what I’ve been doing for my Crohn’s for the past three months.

But that’s not how it currently works. For example, says Sam, “When I go to my GI and I haven’t seen him in two months and I have seen my surgeon four times in that span, I have to explain to my GI what happened at every one of those appointments. I have to repeat the whole thing again with the nurses. It would be really nice if I could go in and my GI knew that I saw the surgeon, what is scheduled for me, and that he would also have the results of the surgeries and my blood tests.“

Sam bears all the responsibility for juggling his academic obligations with the myriad appointments his Crohn’s disease requires. It’s a big job, especially considering that he’s a student in one of UBC’s most challenging programs — engineering physics — and also minoring in commerce.

Sam was first diagnosed in Grade 6, and endured a couple of tough years before the doctors at Toronto’s Sick Kids Hospital finally got his disease under control through regular infusions of the biologic, Remecaid. After that Sam quickly gained 40 pounds and got his life back

Then there was no stopping him. While this humble and unassuming young man is reluctant to sing his own praises, it’s clear Sam is a superstar. He excels in school and played rep baseball through his teens.

Not surprisingly, when he graduated high school Sam had his pick of universities — including scholarship offers from schools in the United States. Ultimately the call of the mountains brought Sam, an avid skier, to Vancouver. Because his Crohn’s was so well managed, he and his parents were comfortable with the long-distance move.

Sam found a Vancouver team of GI specialists at St. Paul’s hospital to take over his care. In the absence of electronic health records, the move meant Sam had to bring his 8-inch-thick chart with him on the plane. It was the second time he had to physically carry his medical records from one facility to another. The first had been when he “graduated” from pediatric care to adult care at age 17 — a move he said meant, “Not having my mom holding my hand, booking my appointments.” Up until then, Sam’s mom had kept a diary that detailed everything going on with Sam’s disease and made notes of questions to ask health-care professionals at his regular appointments.

Taking over that role with his mom’s guidance while he was still living at home helped prepare Sam for what would come when he suffered a serious flare up of his Crohn’s disease in his fourth year of engineering.

It was Sam’s first serious relapse since before high school and it was a bad one. The next 18 months were nothing short of awful. He experienced major issues with abscesses and fistulas. Doctors tried to treat him with fistulotomies and other procedures to no avail. Sam eventually landed in hospital in extreme pain with symptoms that refused to abate. Ultimately, he would be there for more than a month and in the process lose a term of school. His mom flew to Vancouver to be by his side.

I think the only way you can convince somebody to get an ostomy is if you’re out of other options, and at that point, I was out of other options.

“At the end of that month, the doctors threw up their hands and said, ‘We think you need an ostomy to get you out of the hospital,” says Sam. “I think the only way you can convince somebody to get an ostomy is if you’re out of other options, and at that point, I was out of other options.“

He agreed to a temporary ostomy, which he hopes will be reversed after he graduates. In the meantime, back in school, Sam has nurse appointments every second day, regular doctor checkups and has consulted a dietician. He also had to move out of the house he shared with friends because he needed a quieter space with his own bathroom.

It’s a lot for a young man, even one as smart and driven as Sam — both logistically and emotionally.

“You need a calendar and a diary. I have duo-tangs where I have my MRI reports and where I have my blood work requisitions, surgical reports and any other thing. You need to keep a schedule of your infusions and your surgeon appointments and your GI appointments and not forget anything. Plus go to school.”

On the emotional side, although Sam is reticent to admit it, it has been tough. “It is annoying. It has affected my social life — my friends go out drinking and it’s not that I’m a big partier, but I don’t really want to go out and have water when everyone else is drinking.”

He’s also had to adjust his dreams and expectations for now. While his peers are job searching, Sam’s determined to keep his plans short and attainable, and is currently focused on making it through the semester. “It’s frustrating because I’m a planner,” he says. “But mentally, it’s been so hard to make a plan and then make a new plan and then make another new plan. I’ve had too many plans get ruined in the last two years.

“I’m very action oriented. The most frustrating thing for me is not having a linear path. I wish it was like, ‘If you just do this and put in the time, you’ll get better,’ but this disease is like, ‘Do this and put in the time and it might work, we don’t know.’”

Through it all, Sam hasn’t lost his perspective or gratitude. “There’s no point in complaining unless you can do something about it. That’s the way I was raised,” he muses, crediting his parents. “They are extremely supportive. When I was young they never gave me anything. Even in Grade 8 I was working part-time jobs. But as soon as I needed anything like surgery, my mom would be there. They are always there when it matters. I know I can count on them.”

Sam hopes that when The IBD Centre of BC becomes a reality, the integrated care he will receive there will take some of the load off both him and his parents.

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