Finding a new normal in the wake of a life-altering disease
As a graduate student and criminology specialist, Stephanie Solomon- Marcovitch had big plans for her future. But the career path she had in mind was not to be, because of a disease that turned her world upside down during her studies.
Solomon- Marcovitch was diagnosed with Crohn’s disease when she was 16 years old. “I knew that I felt really sick sometimes and that it wasn’t a great diagnosis. Although it affected my life then, I didn’t think it could be a killer disease or the end of the world.”
“I wouldn’t say it took over my life until I was doing my master’s degree in the U. S. That’s when it really hit hard, and eventually I had to return to Canada. It was then that I understood that this could be the end of my life, and that I had lost my whole life,” she says. “This disease does not only affect me, but also my mother, daughter and everyone around me.”
According to Crohn’s and Colitis Canada, an estimated one in 150 Canadians has Crohn’s disease or ulcerative colitis. “This is one of the highest rates in the world,” says Eric Thomson, manager, public policy and stakeholder relations, for Crohn’s and Colitis Canada. “Our mission is to improve the quality of life for the 250,000 Canadians living with these diseases as well as their caregivers and support system of family and friends. These diseases, and the medications which treat them, affect each patient differently. For some patients, it can take a significant amount of trial and error to determine which medication provides stability.”
The first indication of the severity of her condition came more than 20 years ago, when she had to leave her studies at Northeastern University in Boston and return to her home base in Toronto for emergency surgery. At that time, she was diagnosed with colitis rather than Crohn’s. Following a sub-total colectomy, she had to wear a colostomy bag for a year.
A colectomy is an operation in which a section of the large intestine ( colon) is diverted to an artificial opening ( s t oma) in t he abdominal wall and bodily excretion is collected and removed through a sterile pouch.
She had further surgery and a reversal, equipping her with an inside pouch. However, she was still very ill and it took some years before she received the dual diagnosis that she had both Crohn’s and colitis.
Another health crisis struck in 2001, when she had a massive hemorrhage and more emergency surgery.
“I’ ll never forget lying there, looking at the clock and thinking I was watching the potential end of my life, minute by minute,” she says. “But they saved me, and afterwards my doctor put me on a different treatment plan. He explained its seriousness and he also explained that without it, he didn’t think I would be able to continue. It was a last-ditch attempt and it has been a game-changer for me ever since.”
Now 45, Solomon- Marcovitch, who is in charge of corporate relations and social development at a Toronto- based organization that creates opportunities and skill sets for young adults with physical and cognitive disabilities, says she lives in fear of her disease every day.
“Even more, I live in fear that I could be denied access to the drug that has made it possible for me to work and pay taxes and do well for the last 17 years.
“Every birthday is a gift. I didn’t think I would make it past 30. This treatment keeps me alive, and without it, I cannot be the individual I am. Also, I cannot risk slipping back into a time of extreme uncertainty and health struggles similar to what I’ ve already experienced.” She adds that she would be devastated if she were forced to switch treatments.
There are many options in the treatment of autoimmune diseases. All treatments have benefits and risks, some of which can be serious, and can vary by individual.
If you are l i ving with Crohn’s disease or ulcerative colitis, talk to your doctor about treatment options that might be right for you.
Every birthday is a gift. I didn’t think I would make it past 30. This treatment keeps me alive, and without it I cannot be the individual that I am.