It took an “intense, painful and scary” flare and emergency surgery at age 38 for Marie-Josée Lafleur (pictured right) to finally be diagnosed with inflammatory bowel disease, after being misdiagnosed for 15 years.
IBD, which is typically diagnosed between ages 16 and 30, is caused by the body’s immune system attacking the gastrointestinal tract, creating unpredictable bowel movements. Roughly one in 140 to one in 130 Canadians live with the disease.
It’s managed with prescription drugs and lifestyle choices aimed at reducing the inflammatory response. If not managed well, it can lead to complications and a variety of serious health issues including chronic fatigue and pain, malnutrition, anemia, inflammation of other parts of the body and even death.
The majority of IBD patients don’t have advanced, complex forms of the disease, but the key to maintaining that statistic is through early diagnosis and access to advanced treatment options that help patients manage it, said Kate Lee (pictured left), vice-president of research and patient programs at Crohn’s and Colitis Canada, during Benefits Canada’s 2022 Chronic Disease at Work conference in February.
In Lafleur’s case, her late diagnosis had a major impact on her life and career plans. She went through seven more years of surgeries, medical tests, trial-and-error medications and diet supplements to regain some quality of life. Because of the severity of the disease, she works part time in order to receive her weekly medical treatments, which currently includes using a biologic.
“[If I had been diagnosed] just one year prior, I probably would be in full remission, able to keep working full time and probably only rarely have some digestive issues,” said Lafleur, now an IBD patient advocate. “So catching this disease early is really a key thing and having access to the right treatments.”
There’s plenty employers can do to help IBD patients live normally and remain productive at work, she said. “Once someone is diagnosed with IBD, the effectiveness of their treatment will be greatly impacted by whether or not they have access to the medications that offer the best treatments to help induce remission. Medications that fit the patient’s particular case can really make the difference between being able to genuinely live a pretty normal life with long periods of remission or live with a permanent disability.”
Lafleur said patients also need other supports such as physiotherapy and psychotherapy to help them address any painful side-effects and the mental-health toll of the “cyclical, unpredictable nature of the disease, the fatigue, the need to take time off to deal with symptoms or treatments.”
Workplace accommodations like flexible work schedules and the ability to telework can have a major positive impact, she said, as they allow IBD patients to better manage how they deal with their own symptoms and attend medical treatments during the day. Sit-stand desks and ergonomic assessments can also be helpful in helping IBD patients manage their pain levels.
At Lafleur’s own workplace, her manager helped her develop a compressed work schedule so she cold take a few days off after here treatments to recover from any side-effects. “It meant that I could maintain my productivity while allowing me some rest and recovery days around my treatments,”
She also needed to change her surgical bandages while at the office years ago, but struggled to do so in the office bathroom stalls. She said she felt safe enough to tell her manager, who got the company to install a shelf in the bathroom stall where she could place her clean bandages, instead of having to lay them on the floor.
Lafleur encouraged employers and managers to build a relationship of trust with their employees living with IBD and understand their individual journey and symptoms so they feel safe asking for accommodations. “All of us really desperately want to avoid getting sidelined by our disease and we certainly don’t want to negatively impact our work or career aspirations. It’s really worth investing in these individuals.”
Read more coverage of the 2022 Chronic Disease at Work conference.