IBD Patient Stories
Over the past thirty-six years, we have offered this newsletter as a forum for our members/subscribers to share their personal stories about living with gastrointestinal (GI) conditions, including inflammatory bowel disease (IBD). As knowledge and treatment options have expanded for IBD, we wondered how the patient experience has changed. Through our recent BadGut® Lectures across the country, patient roundtable discussions, and public calls for feedback, we have been asking patients, “What is it like to live with IBD in Canada right now?” Recent research suggests that IBD currently affects about 233,000 Canadians. Here we present two of their voices.
Paul
Paul, who lives in Ontario, received his Crohn’s disease (CD) diagnosis in 1993 at the age of 46, and he underwent a colon resection the next year. Today, surgeons will sometimes remove severely diseased portions of the digestive tract, but this is only as a last alternative, usually in cases of failed medical management and/or complications. An unfortunate feature of CD is that there is a high recurrence rate, even after surgical removal of all visible and microscopic disease. Throughout the late nineties, Paul experienced various levels of remission while taking 5-ASA medications, including Pentasa® and Asacol®, which are still widely used today.
In 2001, Paul underwent a second surgery. In CD, an abnormal, tunnel-like connection between the intestine and the skin (fistula) may occur near the opening of the rectum, between loops of intestine within the abdomen, or between the intestine and the abdominal wall, particularly following surgery. Paul developed a fistula in 2006, which was the beginning of what he describes as “a very painful episode” that included more fistulae and many surgeries. Eventually, his health care team determined that removal of more intestinal tissue was required, and that an ileostomy (a surgical procedure in which the end of the small intestine is brought through an opening in the abdominal wall) was the best option for controlling Paul’s disease activity.
He told us, “A month or two after I came home,
Paul explained, “Since that very dark period I have been fortunate to have healed completely and now have a very good quality of life. I have developed antibodies to Remicade, which causes a mild reaction at each infusion, but I remain relatively healthy and again enjoy a full life.”
Mary Anne
Mary Anne’s journey with IBD began in 2008, when she received a diagnosis of ulcerative colitis (UC). Unlike Crohn’s disease, UC involves only the colon and always begins at the anus, with disease activity continuously progressing upward; inflammation involves only the inner mucosa (as opposed to Crohn’s disease, in which inflammation can extend through the entire thickness of the bowel wall). However, UC can be severe for some patients, as it is for Mary Anne, who requires regular Remicade® infusions to control disease activity. In addition to fears about her future and the long-term effects of treatment, Mary Anne is very concerned about access to medications. She travels over 120km every few weeks to receive a Remicade® infusion. “Not only is access to the drug for rural residents challenging,” she explained, “but access to specialists is as well.” She must travel several hours to see her GI specialist and incurs travel and accommodation costs for each visit.
Biologic medications such as Remicade® and Humira® cost considerably more to develop and produce than previous classes of IBD medications, and can therefore be very expensive for patients, especially since drug formulary coverage varies from province to province. In BC, where Mary Anne lives, patients must meet specific criteria in order to receive coverage through BC PharmaCare for Remicade®, and while having some kind of eligibility criteria is typical, these criteria vary widely across jurisdictions in Canada. Mary Anne asked, “Why should some be entitled to access to medication when others are not? I have been approved for financial assistance for a year, but what happens when I am up for review and possibly am not approved? Do I get taken off the drug? Is that fair? Should fairness even come into play when we are talking about health care?”
The GI Society continues to monitor issues around IBD research and affordable patient access to necessary medications. Please contact us if you are a patient, family member, or caregiver, and would like to share your experience with IBD.