How do you raise awareness about a disease people are reluctant to talk about? How do you speak out on behalf of patients who often suffer in silence, because their challenges are deemed embarrassing?
When Brian Bressler walks into a room full of decision-makers to state his case for patients living with inflammatory bowel disease (IBD), he typically has to first convince his audience that the topic is important. "This takes up a lot of time that could be spent discussing solutions," says the Vancouver-based gastroenterologist. "If I was arguing for better care for cancer or heart disease patients, for example, I wouldn't need to start the conversation with the basics."
Mina Mawani, president and CEO of Crohn's and Colitis Canada, also sees an urgent need for better awareness of IBD. Crohn's disease and ulcerative colitis, the main forms of IBD, affect around 129,000 and 104,000 Canadians respectively – among the highest rates of prevalence in the world.
"Crohn's and colitis are chronic diseases, and their effects are felt not only by the patients, who are often unable to work, attend school and socialize, but also their family members, friends and coworkers," says Mawani. "IBD has a huge societal and economic impact."
Since IBD triggers an inflammatory response that causes damage in the body, a timely diagnosis and continued patient care are essential, says Dr. Bressler. "When managing Crohn's and colitis, a physician has to accurately and safely assess the inflammation at any stage in a patient's life, and then recommend a suitable therapy."
When appropriate medical care is not delivered in a timely manner, patients continue to suffer from the symptoms, says Dr. Bressler, and a serious delay in diagnosis and appropriate treatment may lead to hospitalization and surgery.
At the time of the interview, Dr. Bressler was dismayed from having to give bad news to a new patient from northern British Columbia. "He didn't have timely access to a specialist and appropriate therapies and is now at the point where his best option, in my assessment, is surgery," he says.
Dr. Bressler believes a more thorough investigation and intervention earlier in the course of the disease could have achieved a significantly better outcome. "Frankly, having to tell a 30-year-old patient that he requires an extensive small bowel resection due to a delay in care is upsetting to me."
"Frankly, having to tell a 30-year-old patient that he requires an extensive small bowel resection due to a delay in care is upsetting to me."
- Dr. Brian Bressler
is a Vancouver-based gastroenterologist
Fortunately, this example is the exception rather than the norm in Dr. Bressler's practice. "We see patients all the time who, due to effective medical therapies, report that their lives have changed for the better," he says.
Dr. Bressler credits the combined efforts of advocates, physicians, researchers and organizations with catalyzing important discoveries and improved understanding and care. There is no doubt that medical advances – and more effective therapies – contribute significantly to a patient's quality of life, but the successful management of symptoms is only the beginning, he says. "An appropriate therapy improves the present well-being of the patient, but what is equally important is a reduction of the risk of complications in the future."
Mawani agrees that access to specialists and treatments can make a big difference. She suggests one additional point of access: to washrooms. "For patients living with Crohn's or colitis, it's important to know where they can use a washroom when they travel from point A to point B," she says. "When they experience a flare, they might have to go to the washroom 20 times a day. That's hard enough when they're working in an office, but imagine being on the road and having to worry about the next bout of diarrhea."
Crohn's and Colitis Canada's GoHere Washroom Access Initiative encourages businesses to display decals showing that people with incontinence conditions are welcome to use the washrooms without questions asked, says Mawani. The GoHere washroom finder app for smartphones uses GPS tracking to locate nearby washroom facilities.
Mawani advises that Crohn's and colitis are "invisible diseases," because people living with them may appear healthy even when they are dealing with internal pain and inflammation. And they often don't feel comfortable sharing their stories publicly.
Speaking out about having a "bathroom disease" isn't easy, but Dr. Bressler believes it is necessary for creating the awareness that is needed for a transformative approach to how the disease is regarded and how patients are cared for, he says. "The people who do come forward and talk about their struggles, they are my heroes."
To get involved, learn more about the No Forced Switch campaign and send a letter to your MPP, MLA or provincial minister of health visit action.crohnsandcolitis.ca.
To see your province or territory’s grade in the IBD Report Card and learn what you can do locally to help your voice be heard, visit badgut.org.
This content was produced by Randall Anthony Communications, in partnership with The Globe and Mail's advertising department. The Globe's editorial department was not involved in its creation.