‘Not just a bathroom disease’ – timely treatment and awareness improving outcomes for people with inflammatory bowel disease
As a flight attendant, Adam Polak was flying high with a job he loved when a diagnosis of ulcerative colitis brought him down. “I love everything about being a flight attendant,” he says.
“The people, the travel, the workplace in the sky, the ever-changing view out the window.”
But it gets to be problematic when you find yourself having to run to the bathroom four to 10 times, and sometimes as much as 20 times, a day with the feeling you have to go “number two” – and then look into the bowl and see blood. Polak endured these recurring symptoms, including severe abdominal pains, for several years before working up the courage to get medical help. “I’d been consulting Dr. Google for some time hoping it would just go away on its own,” he says. “But there was a term that kept popping up.”
The term was ulcerative colitis, which along with Crohn’s disease is one of main forms of inflammatory bowel disease (IBD) – autoimmune diseases that involve chronic inflammation of the lining of the gastrointestinal tract and interfere, often very painfully, with the body’s ability to digest food, absorb nutrition and eliminate waste. When a colonoscopy confirmed Polak’s suspicion two years ago, he embarked on a treatment program for a malady for which a cure is currently not known.
Dr. Brian Bressler, a Vancouver-based gastroenterologist, confirms that newly diagnosed patients come to him shell-shocked and afraid. Due to a lack of awareness about IBD, he typically has to start with some basic facts that are hard to digest. “The conversation is difficult,” he says. “The majority of [newly diagnosed patients] are young – most in fact are diagnosed before the age of 30 – and they have difficulty accepting that this is a disease without a cure and that they are going to be on medication for the rest of their lives.”
Patients are already under tremendous pressure of dealing with both the pain and the shame of having what is often considered “a bathroom disease,” and Dr. Bressler says he is confident stress plays a significant role in triggering flare-ups – periods of active inflammation.
The good news for people like Polak and the estimated half a million Canadians living with IBD is that both management and treatment protocols – as well as medications used to treat patients – have advanced rapidly. “We have been fortunate that there have been important discoveries in how to treat IBD, and medical therapies that target the disease can be very effective to the point where more and more patients are able to live with a minimum of pain and disruption,” says Dr. Bressler. “But if appropriate care is not delivered in a timely manner, there are consequences. Patients continue to suffer and risk hospitalization and surgery.”
Dr. Bressler adds that an appropriate therapy accomplishes two goals: to address inflammation and symptoms in the present and reduce the risks of complications associated with IBD in the future. “We have more and more medical options that can accomplish both goals,” he says, adding that increased awareness, which helps to get those suffering IBD symptoms into doctors’ offices sooner, can further improve outcomes.
If there’s one thing both Polak and Dr. Bressler would like to see in addition to a cure, it is for more Canadians to understand that IBD is more than an inconvenience exacerbated by poor dietary choices. “It’s tremendously impactful,” says Polak. “You have to plan your life and travel around where bathrooms are located, and the disease can come with a raft of what I call ‘side dishes,’ including joint and eye pain, skin problems, blood abnormalities, liver trouble, osteoporosis, mouth sores and severe arthritis in the lower back.”
Dr. Bressler believes one of the biggest challenges revolves around the psychological impact. It isn’t just what’s happening to patients now, but their fears about the future, their quality of life, their ability to do something as simple as jump on a plane and go on a holiday. “It would be nice if people were able to understand that it’s something really major and not just a matter of going to the bathroom a lot,” he says, adding that IBD can lead to social isolation and “depression is common.”
Thanks to people like Polak who are not afraid to speak out about symptoms that may be considered embarrassing, awareness about IBD is growing.
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