Patient Story: 12 to Life for Justin

Who am I? Why am I an advocate? Why do I talk about IBD? Why IBD and not "Crohn's Disease" or "Ulcerative Colitis"? How many questions do you have? Where do I start?

Well, I'm Justin. I write the blog Crohn's Knows. The Greek titan Cronus is where I got the name. My friend and I were talking and he suggested the blog, we thought of names and this is what I settled on. Two reasons: 1 – most of what I thought of was taken; 2 – it was TIME to talk about IBD. Cronus/chronology/time. Get it???

My IBD story begins in 1997. Yes, approaching 20 years of a life with IBD! I was a "normal" kid. For the first 12 years of my life I went to school with no issues, had good marks, a few close friends, and played a lot of sports. I was for the most party healthy and active. I was big - overweight to be honest. But it didn't bother me that much. I played organized baseball, street hockey, and schoolyard football. I grew up in Windsor, Ontario, that's southern Canada and South Detroit. There were no signs of IBD early in my life.

Enter October of 1997. For me the first symptoms were going to the washroom non-stop. Bleeding each trip to the washroom. I went from around 160-170 lbs down to 70 in a matter of months. I was pale and weak. I was having trouble sleeping through the night and eating. Everything was causing me pain and we had no idea what was happening. I was 12. Maybe it was some kind of body/puberty change? But it continued. Bruises started to pop up on my legs and my parents asked if somebody was beating me up at school. "What did you do to your shins?" What was going on??? My diagnosis luckily did not take long. After my parents got tired of watching me fade away, it was off to my family doctor. After looking at the symptoms I reported and the bruises on my legs, he called in a gastro specialist. "Crohn's Disease, maybe Ulcerative Colitis". What? Huh? Umm, I'm 12. Can you bring it down a little to something I know? Cancer? Flu? Diabetes? Crohn's Disease??? Can't it be Leukemia or something?

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Nope. It was "Crohn's Disease" and whatever that meant. My diagnosis started in November of 1997 and was confirmed in January 1998 but a colonoscopy; such fun for a 12-year-old. I was about to turn 13, but still. I remember nights in the hospital, begging my mom to give me toast. "NPO" became dreaded words, as did trips to the washroom to let water flow out of me. Teen years were hard enough. Now I had this "pooping disease" that I didn't know anything about and the knowledge and internet support were very weak to where we are now.

Maybe I could play baseball in the spring if everything went well. Nope. Scratch the first dream. Maybe I could… why bother??? After so much being taken away, time and time again, it became and remains hard to dream. Goals get revised all the time now. They have for years. Listening to classmates say "I want to play in the NHL" and my goal was what? Not go to the washroom? Attend classes? Become an accountant. Such fantastic imagination for a kid.

My teen years were my worst. From 12-18 I missed a lot of school, struggled with the washroom and tried to feel better. I tried natural medications to start. Every time something would be fixed, it would be another "infection" according to the doctor. It never ended and it was horrible. Apart from the taste of them, the medications were not covered and quite expensive. By 17, I had tried massage, chiropractors, natural medications, acupuncture, jumping up and down, steroids, Imuran, Salofalk, and so on. Nothing was working and I had developed an abscess.

In February 2003 I turned 18 and celebrated with my first surgical procedure. I had a resection of large and small bowel. The surgeon removed about 10 inches altogether and for a while I felt better. I was able to go to class and graduate high school, start university, and have a couple of decent years. I started Remicade and had transitioned to being an adult.

Remicade seemed to help early on. My IBD was slowly progressing but I felt more energetic still. I was able to eat and golf and do some normal things. As time went on with Remicade it slowly stopped working. By the week before an infusion, I was in active flares every time! The drug that worked for many had seemed to fail me. I was discharged by my GI in October 2011 since I had moved cities and could not visit him. I was highly unmonitored.

I went mostly on my own from 2011 to 2014. In 2014 I started to piece together my care system again. First was a reliable GI and the introduction of Humira. There were tests and checkups, which revealed a long stricture, bleeding, polyps, a fistula and other IBD issues.

Now on Humira, I am doing okay I think, or at least not getting any worse. I live apart from family and own my care. I speak up for myself because I have to, I don't have a support group close to me. I am able to work a good job and have been there for 5 years, so some of my goals and things have leveled out. I can be moderately active but prefer to rest as I feel exhausted. I fear I have no strength. I fear that I have lost so much I don't want to lose again.

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IBD has not defined my life but it has helped shape it. In my "IBD world" I am an activist that fights for understanding and tries to encourage patients to take an active role in their well-being. There are no perfect answers or perfect patients. There will be things I've experienced because of my early diagnosis others will not experience. Patients adjust to what they have and how to survive. I've done it in time and that has led me to where I am today with a complete life with a full-time job and a full-time disease.

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