Prevention & Recovery

Learning to live with Crohn's disease

By: Jessica Minervini, with photography by Seed9

Author: Canadian Living

Prevention & Recovery

Learning to live with Crohn's disease

By: Jessica Minervini, with photography by Seed9

As a teen, I was diagnosed with an autoimmune disease that prevented me from living life to the fullest. Now I have taken control of my health -- and my life.

2002
My mom sat with me as I explained to my doctor that, for the past two months, whenever I had tried to eat something, an immediate stabbing pain in my stomach would have me running to the washroom. Not being able to eat, I was quickly losing weight and barely making it to school.

The anxieties of being 13 and being bullied at school, and the stress of coping with my parents' divorce and the death of my grandfather were affecting my health, but my doctor believed something more was going on.

Two weeks and what seemed like 20 tests later, I was referred to a gastroenterologist at The Hospital for Sick Children in Toronto. I was diagnosed with an aggressive case of Crohn's disease, an autoimmune disorder and inflammatory bowel disease that was causing severe inflammation in my small intestine.

My doctor prescribed a hefty dose
of a steroid called prednisone, which began treating the disease immediately but also had me channelling Jekyll and Hyde with my mood swings and making kids' crafts to control my constant fidgeting.

December came and so did the flu, prompting my first major flare-up. I gave up on going to school as I spent most of my days on the toilet with bloody diarrhea. Scared and overwhelmed, I stopped telling my family how I was feeling. I blamed my sickly appearance on the flu and kept my condition to myself. I was in denial.

The turning point came the day I fainted. My mom rushed home and saw the seriousness of my bathroom visits. All I remember is waking up at Sick Kids, hooked up to all kinds of tubes.

According to the doctors there, severe dehydration and blood loss had left me 10 minutes away from losing my life. My health didn't improve during my hospital stay, so I was put on a new medication called Remicade. A few days later I was sent home, and I spent the next three years in medicated remission.

2006
In high school I didn't stress about getting straight As. I always kept my teachers in the loop about sick days and quick escapes to the bathroom. It was hard missing out on parties and get-togethers with friends, but Crohn's was a part of my life and my health was my top priority.

In 2006 I gained a Crohn's companion: my sister, Deanna, who was 16 at the time. Although she had a more moderate case, we connected in a way we couldn't before. It was nice for us not to have to go through the crazy nurses, annoying tests and, well, poo crises alone.

Around that time, an anaphylactic reaction to the Remicade forced me to switch to a similar but more advanced drug called Humira. But by 2009, it wasn't doing the trick anymore. The scar tissue from my flare-up in 2002 was causing a blockage in my small intestine that only surgery could fix.

I was in my second year at the University of Windsor, where I was successfully balancing schoolwork and a social life, but I knew the surgery was necessary, so I moved back home to Toronto.

2009
My world felt like a mess. I missed school and friends so much that I experienced bouts of severe depression. Thankfully, I had the support of family and friends, and on April 3, 2009, four days before my 20th birthday, I went in for surgery with their well wishes. The doctors removed nearly a foot of my small intestine and, besides a bumpy recovery, I was healthy and medication-free.

That summer I promised myself that I would start opening myself up to more experiences. So I went skydiving, got a tattoo and enjoyed every minute I had with my family and friends.

Someone once described Crohn's to me as a disease that makes your body constantly allergic to itself; therefore, there is no cure. I shouldn't have gone off medication after the surgery, but with my eagerness to be a "normal" adult, I persuaded my doctor to let me try.

Six months after my surgery, the disease came back and affected more than just my digestive system. Because of this setback, Humira was no longer viable, and I had exhausted the other mainstream options. Luckily, Dr. Mark Silverberg, my specialist
at Mount Sinai Hospital in Toronto and a leading researcher in inflammatory bowel disease, got me onto an experimental medication called Simponi.

Today
Today I am in full medicated remission. My biggest challenge for the future will be managing new stresses in life, such as being medication-free long enough to start a family. (Crohn's medications such as Simponi and Humira are still new, and the long-term effects they would have on a baby are unknown.)

For now, I cope with having mornings when I just can't get out of bed and the burden of always being on the lookout for the nearest public washroom, because mini flare-ups come without warning.

Having Crohn's has been a true test of who I am as a person, but I'll never let this disease become an excuse. I made up for that missed semester of university and graduated on time, with honours, then went on to complete a postgraduate program in book and magazine publishing.

I look forward to the next chapter of my life, with a job that I love and friends and family who are the best support system a girl with Crohn's could ask for.

Are you reading because you have tummy troubles? Here's how to tame them. Also be aware that some gastro-intestinal symptoms are ones you shouldn't ignore.


This story was originally titled "Living With Crohn's" in the May 2013 issue.

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Learning to live with Crohn's disease

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