Sloane Square | Being Alive

Okay, so yesterday was World IBD Day, but I didn’t get a chance to post…

For those who aren’t aware, IBD stands for Inflammatory Bowel Disease, a blanket term used for chronic auto-immune diseases that occur in the digestive tract. There are three forms of IBD: Crohn’s disease, Ulcerative colitis, and Indeterminate colitis. The main differences between the three are where in the tract the disease lives. Crohn’s can be active in the entire tract, colitis in the lower tract, and indeterminate is what happens when they can’t decide which of the first two you fall into.  I am one of 200,000 Canadians living with IBD, and since yesterday was about raising awareness I thought I’d take a minute to share my story.

It starts back in November 2001. I remember sitting in 10th grade English class when I first felt the pain in my stomach. I was 14 years old, and aside from being a little overweight had never had any health issues. The stomach ache continued for weeks, and when my mom took me to the doctor they said it was just nerves.

Over the next year and a half I became progressively sicker. By early 2003 the pain was debilitating. I dropped from 170 lbs to 115 lbs. My hair was falling out in clumps, my teeth were beginning to rot, and my eyesight was deteriorating. I slept nearly 20 hours a day. I had to go to the emergency room every other week to receive IV fluids because my body could no longer retain anything.

Ironically, with the weight loss, I’d frequently hear “Oh you lost weight! You look great!” because of course that’s what happens.

During 2002 the doctor tested me for numerous food intolerance’s. I spent 3 months off of dairy, 3 months off of gluten, 3 months off of sugar, but nothing made a difference. Stumped, my doctor sent me to McMaster to see a specialist.

In early 2003 I sat down with a pediatric gastroenterologist who asked me questions for about an hour. And at the end he said “you have either Crohn’s Disease or Ulcerative Colitis and we’ll do a test to find out which”. Those words meant nothing to me at the time, but he gave me some reading to do and the next week, at age 16, I had my first colonoscopy.

The specialist brought me back in a day or so after the scope to confirm that I did have Ulcerative Colitis and prescribe me Prednisone, explaining it’s long list of side effects. I went home, hopeful that this nightmare was over.

Unfortunately that wasn’t the case.

After a month of taking Prednisode with still worsening symptoms I was back at McMaster where I learned that my digestive system was so damaged that my body was simply unable to absorb anything I ingested. The only option would be to admit me to the hospital and be treated intravenously. I was admitted to the hospital and after about a week the stomach ache I’d had for 18 months eased up. For the first time in over a year I wasn’t rushing to the bathroom every hour. I was even able to look at food without becoming nauseous!

After several days of steady improvement I transitioned from IV to oral Prednisone and was released. There was nowhere to go but up!

Except, maybe… not quite?

Less than a week after being home I awoke in the middle of the night with severe chest pain and was rushed to the hospital. I was in the ICU for a few days, following a “cardiac event”, which I’d learn years later was a side effect of the Prednisone. It would be the first in a decade long struggle I’d have with treatment side effects.

You see, they don’t really know much about IBD. They know that for some unknown reason people’s immune systems rev up and begin to attack the digestive tract, but without knowing why, they don’t have many options to stop it. So the most common treatment is to suppress the immune system down to a level that it’s simply unable to attack. Great for ridding you of the pesky IBD symptoms, but horrible for helping your body fight literally anything else. As a result I caught every virus I came into contact with. And I’d not only catch every virus, I’d get way sicker than whoever I caught it from.

Living in a dorm during my first year of university and being in immunosuppressants was an especially bad combination. In the spring there was a virus going around residence that actually landed me in the hospital. I then caught another virus that was going around the hospital, which resulted in me being in a quarantined ward room of a foreign hospital. Fun times!

In 2013, nearly a decade after starting the immunosuppressants the ongoing cold I’d had all those years morphed into recurrent pneumonia. This ended up being a sign that the medication I was on had caused blood poisoning, and eventual septicemia, landing me once again in the hospital, followed by four months of bed rest. Because the only way to resolve the blood poisoning was to go off of the immunosuppressant (which, fun fact, contain classified carcinogens), wait, and hope the colitis didn’t relapse.

And then I got lucky. The toxicity passed and I didn’t relapse, and have not been on any UC meds since 2013. Over the last few months I’ve started having some minor symptoms, and am going for a scope tomorrow to see how things are looking. I don’t think my UC has relapsed, and hopefully I’m correct, but I also know that my string of good luck on that front is due to end sometime. Hopefully that sometime is not now, because I’m not going to lie, I’m terrified of having to go back on the meds…

Updated To Add:

No relapse!