Portland Pirates coach copes with Crohn's disease, advocates for awareness
PORTLAND — Most people would rather not have their digestive tract problems publicized on the Internet and in print.
But Portland Pirates head coach Kevin Dineen speaks freely about his more than 20-year battle with Crohn's disease, a condition that causes inflammation of the bowels. The former NHL player is even featured in a new publication aimed at connecting and educating people with Crohn's.
"It's nothing to be embarrassed about," Dineen, 45, said during a recent interview. "It put me in a role-model situation because it showed you could live, function and play a high level physical sport."
Dineen was 22 years old and playing for the Hartford Whalers when he first experienced the symptoms of Crohn's – severe abdominal cramping, diarrhea and fatigue. He thought it would go away, he said, but it soon became apparent he wasn't suffering from a temporary injury. The doctor diagnosed him with Crohn's disease.
"I was hesitant at first to publicize it," said Dineen. "Once it was out, though, the response was incredible. A lot of people wanted to connect and talk about it."
Dineen became an advocate for the Crohn's & Colitis Foundation of America.
The disease effects people in different ways, and can even cause ulcers. Dineen said his experience is worst when he is physically worn down, or stressed. He has learned to limit his intake of certain foods, like greens and coffee.
"There's no cure for Crohn's," he said. "You have to trust in your medical care and work through flare-ups."
No one knows what causes Crohn's. Dineen said some believe the disease is hereditary, although so far, none of Dineen's four kids have shown signs of it.
Dineen, a Cape Elizabeth resident, works with the local Crohn's foundation, talking with children about the disease.
He became associated this year with Crohn's Advocate, a magazine created by UCB, a bio-pharmaceutical company that focuses on central nervous system and immunology disorders; he was featured in the first issue, which was released in April. Crohn's Advocate and the crohnsadvocate.com Web site are focused on connecting the more than 500,000 people living with Crohn's in the U.S. The program also has an ongoing forum series, where an advocate (like Dineen) and medical professionals discuss the disease.
Dineen said that when he was diagnosed with Crohn's 23 years ago, there was not a lot of ready information.
"Obviously there wasn't the Internet," he said. He is hopeful the new Crohn's program will help educate and guide people with the disease.
"It's scary, frustrating and debilitating," he said. "But you can live a full life."
Dineen played professional hockey for 18 years and has coached the Pirates since 2005.