Crohn’s patient urges others not to be embarrassed about the disease
HALIFAX – A Halifax woman hopes her tale of coping with Crohn’s Disease encourages others to speak out about the debilitating disease.
Shannon Stevenson, 26, was diagnosed with the condition six years ago. She first began to develop symptoms when she moved away to university.
“I started to get sick sometimes when I ate certain things. Food wasn’t staying in me very long and my first year of university, I started to lose quite a bit of weight.”
A visit to the doctor and a series of tests later revealed a diagnosis of the autoimmune disease in which her immune system attacks her digestive system. Symptoms include abdominal pain, inflammation and pain in the bowels.
“We had no idea what Crohn’s Disease was at all,” she said, adding there is no family history of the condition.
“We were slightly terrified but at least we were relieved to know what it was.”
Stevenson admits she kept her disease under wraps for the first two years.
“I didn’t really understand it. I didn’t know how to express to people ‘This is what’s wrong with me’,” she said.
Stevenson calls her condition “the bathroom disease” and acknowledges that it can be embarrassing to talk about such a personal thing.
“It’s still behind closed doors. People aren’t as adamant to share it because they’re slightly embarrassed.”
However, she said speaking up will help people better understand the condition.
“It makes people more empathetic. If someone’s saying they need to use the bathroom, like retailers will let them in the bathroom. Or if somebody’s saying ‘I can’t eat that because of [Crohn’s], maybe people will be more likely to pay attention to that.”
Husband James said he has seen a shift in Stevenson since she started speaking up about her disease.
“At first she wasn’t talking too much about it because she didn’t know too many people who had Crohn’s,” he said.
“I’ve noticed she’s begun to talk more. She’s begun to share and be more vocal about it.”
“It’s raising awareness but I believe it’s also going to help find a cure eventually.”
Angela Akpan, the development coordinator for Crohn’s and Colitis Canada in the Maritimes, said there are more than 7,300 people in Nova Scotia and 5,200 people in New Brunswick living with Crohn’s and colitis.
There is no cause and no cure for the condition.
“To be open about [it] is hard and challenging for people,” she said.
“They don’t wear their disease on their face like other people.”
Akpan said the organization is trying to overcome the stigma this month, which is National Crohn’s and Colitis Awareness month.
“This is the first time they’re seeing themselves, their issues, their concerns, their challenges, they’re being shared publicly,” she said.
“I’ve received calls from moms who are like ‘My child has it. He’s only 10 years old. He’s not wanting to share with his friends that he has bathroom troubles but thank you for doing what you’re doing. I need to know there’s others out there’.”
Barbara Currie, a nurse practitioner in inflammatory bowel disease (IBD), said she has seen the incidence of the disease increase over the last few years, which she said makes it even more critical to talk about it.
“The earlier people get treatment or diagnosis of IBD then they can get earlier treatment. That will result in significant healthcare costs and quality of life down the road when people aren’t in hospitals,” she said.
Stevenson is now in remission. She receives IV infusions every two months, which help suppress her immune system.
“It’s making every day a little bit easier. I can run around and play with my kid and not worry about where the bathroom is every minute.”
Some resources suggested by Currie for patients include: