The need for more options: Michael Leavens' story

Crohn’s and Colitis Canada is conducting a nationwide education campaign underscoring that treatments for Crohn’s and colitis are not one-size-fits-all, and that Canadians living with these chronic diseases need more options. Michael Leavens from London was diagnosed with ulcerative colitis at 23. Here is his perspective:
 
I was attending college in Toronto when my symptoms started. I was eating healthy and exercising regularly, but still found myself running out of energy. Over the course of six months, I was slowly becoming anemic due to the loss of blood in my stools. I ignored it and hoped it would go away on its own, but I was wrong. 
 
While home visiting my parents in Northern Ontario, I went to my family doctor. It was clear something was seriously wrong. I was admitted to hospital for a blood transfusion, and was kept under observation for four days before being referred to a specialist in Toronto. That’s when I finally had an explanation for all of my symptoms: ulcerative colitis.
 
This started a process of trial and error, trying different combinations of different medications; none worked well for more than a year at a time. This cycle went on until I walked in to emergency at Mount Sinai Hospital during a particularly bad flare-up. The doctor on call recognized my treatment wasn’t working, and put me on a new combination.
 
It worked for about three years, providing stability for the first time since my diagnosis. During this time, I relocated to London for work and was referred to an internationally recognized expert in the treatment of ulcerative colitis and Crohn’s disease.  This was an ideal circumstance, as my combination of three or four different medications would soon stop working.
 
Having tried most of the available treatments at the time, my doctor referred me to a new clinical trial.  The process was scary at first – I felt like a guinea pig. But the researchers were upfront about the possible risks, and they weren’t much of a deterrent. Thankfully, the trial treatment worked for me from day one, and I’ve continued on it for the past nine years. It has since been approved by regulators and is now available to doctors and patients across Canada.
 
It was while participating in the clinical trial I first realized how many others were facing the same challenges. I joined a clinical trial out of personal interest, but came out of it hoping my participation would help others seeking an effective long-term treatment for UC. I’m sharing my story today because I want others to know there is hope  - we need more options.

  • Canada has among the highest incidence rates of Crohn's and colitis in the world.
  • 1 in 150 Canadians lives with Crohn’s or colitis.
  • Families new to Canada are developing these diseases for the first time.
  • Incidence of Crohn’s in Canadian kids under 10 has doubled since 1995.
  • People are most commonly diagnosed before age 30.

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