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09 Aug, Tuesday
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Montreal Families

Teen lives with chronic disease

Two years ago, Simon Boyer was recovering from Mono when he began to develop an acute pain in his abdomen, had chronic diarrhea and was occasionally vomiting. His doctors initially thought he was having difficulty recovering from the illness but a couple of months later, his mom, Genevieve Gray, received a call from the high school secretary. She said that Simon (who is now 14 years old) was frequently in her office, complaining of stomach pain and fatigue. It was then that Gray realized there had to be something else going on with her son.

Simon’s father took him to the emergency department of the Montreal Children’s Hospital, where the staff took his symptoms very seriously. “Within very little time, there was a swat team of gastrointestinal doctors around them investigating,” Gray said. Soon after, he had to have a colonoscopy and endoscopy. “We were terrified that he might have cancer because he had also recently lost a lot of weight.”

But her worst fears were allayed when the doctor told her that Simon had Crohn’s – an incurable chronic disease that usually affects the stomach and/or intestines. Symptoms include diarrhea (sometimes bloody), fever, nausea, weight loss and stomach pain. “When the doctor told me, I started crying, half from relief that it wasn’t cancer and half because we knew we were going to be embarking on a difficult journey,” Gray said.

During one of Simon’s hospital stays, he produced a PowerPoint presentation about his condition and experience. One of the nurses was so impressed that she told her professor at McGill University about it. Simon was asked to do the presentation in front of a group of nursing students. He has also presented it to a second McGill class and to students at his high school.

“So many people don’t know about Crohn’s,” he said. “It is important for me that people understand that it doesn’t make you different. You just have to eat different foods and carry extra clothes in case of an accident. And sometimes it hinders you from doing social things because you can spend a lot of time in pain or in the bathroom.”

Simon was put on various steroids to treat his condition but nothing seemed to help and he found himself being readmitted to hospital four times within a year. Then last November, doctors talked to the family about Remicade, an effective medication that hasn’t been used on pediatric patients for very long. “It was a terrifying decision that we all wrestled with because little is known about the long-term effects,” Gray said.

The family made the decision to give it a try in the hopes that Simon would regain some quality of life. So every six weeks, Simon goes to a clinic where he is hooked up to an intravenous drip for three hours and injected with the medication. Thankfully, the Remicade is working and has greatly reduced his flare-ups, which has allowed him to pursue his passion of skateboarding and other hobbies like rollerblading and basketball.

“He’s getting his life back and we are getting our son back,” Gray said.

She says she is proud that her son has had such a great attitude since his diagnosis and he’s always quick to point out that his situation could be much worse. As for the rest of the family, (father Mark, 12-year-old Ethan and 7-year-old Andrew) everyone has tried to go on living a normal life while being supportive to Simon. In June, the family took part in the five-kilometre Heel’n’Wheel-a-Thon and raised $2,500 for medical research. “Although the medication is working for him at the moment, I look forward to the day when this disease will be eradicated,” Gray said.

Facts about Crohn’s and Colitis

Inflammatory Bowel Disease (IBD) is the term given for two chronic conditions: Crohn’s and Ulcerative Colitis. Both conditions affect the digestive system and cause the intestinal tissue to become inflamed, form sores and bleed easily. Symptoms include abdominal pain, cramping, fatigue and diarrhea.

IBD affects more than 200,000 Canadians.

Canada has among the highest number of IBD sufferers in the world.

There is no cure but medication can sometimes alleviate symptoms. Other times, surgery is required.

Local study underway about Crohn’s disease

Maria Gordon is a Montreal Ph.D. candidate who is doing a study about the experiences of families who have a child with Inflammatory Bowel Disease (Crohn’s or Ulcerative Colitis). She is specifically focused on the child’s experiences in school. “These kids need special treatment like the ability to go to the washroom at will. They may need extra help with homework because of absenteeism due to the illness and may have to sit out of certain activities,” she says. If you would like more information or would like to participate in the study, call (514) 817-9675.

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