Despite Advances In Research, Treatments For Crohn’s And Colitis Remain Limited
Education and Advocacy Entering remission can be difficult for those with Crohn’s disease or colitis, especially when they are unable to access costly treatments.
Sandra Zelinsky has spent the last 24 years trying to stay at least one step ahead of inflammatory bowel disease (IBD). In that time, she’s been on several medications, undergone several surgeries, and ridden the ups and downs of living with a chronic disease that has a way of throwing new problems at you. “A few of the medications have worked amazingly but most of them were unsuccessful. My disease state constantly evolves, and as it changes, so do my medical needs,” says Zelinsky.
Crohn’s disease and ulcerative colitis, the two main forms of inflammatory bowel disease, cause the body to attack itself, leading to inflammation of the gastrointestinal tract. People living with Crohn’s or colitis must endure abdominal pain, cramps, bloating, fatigue, frequent and urgent bowel movements, internal bleeding, and unintended weight loss.
“In spite of the symptoms, people with IBD often look ‘normal’ on the outside,” says Mina Mawani, President and CEO of Crohn’s and Colitis Canada. “Canada in particular has some of the highest rates of inflammatory bowel disease in the world. With 250,000 Canadians living with Crohn’s or colitis, you may know someone who is affected by this. It’s also important to note that each person’s experience with the disease is unique.”
Most people with Crohn’s disease or ulcerative colitis are diagnosed in their late teens and early 20s. “You can imagine that this disrupts their education and plans for the future in a very big way,” says Mawani.
There is no cure for Crohn’s or colitis, but treatments can put the disease into remission, and patients can experience a reduction in their symptoms. “Being in remission means we can live active, productive lives, and we can stay out of emergency rooms and avoid further surgeries,” says Zelinsky, who now works as a patient engagement researcher and advocates for patient-centred care. “Each patient responds differently to different courses of treatment.”
“To achieve remission, a patient may have to try multiple treatments before finding one that works for him or her. Each unsuccessful attempt means there’s one less option available from an already limited number of treatments, and a treatment that works well for someone today could stop working tomorrow,” says Mawani.
“Having more and new options to choose from is integral to maintaining hope for continued remission. This is vital for people living with chronic diseases like Crohn’s and colitis.”
However, access to IBD treatments varies across Canada, which means many patients can’t get necessary medication because their province or territory does not cover it. It can take someone up to two years from the onset of symptoms to be properly diagnosed with Crohn’s or colitis. Beyond that, it can take several years and multiple rounds of trial and error before landing on the treatment that’s most effective — the one that offers stability and the ability to live a normal life.
Crohn’s and Colitis Canada advocates for the rights of patients and doctors to select the treatment best suited to a patient’s individual circumstances.
Mawani explains, “To ensure the best possible health outcomes, we believe doctors and patients across Canada should have access to all medications approved for treating Crohn’s or colitis. Once patients have found a successful treatment, they should not be forced to abandon it due to cost alone.”
To learn more about these diseases and how you can help, visit crohnsandcolitis.ca.