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crohn's and colitis canada: inflammatory bowel disease also comes with stigma, cancer risk and mental health issues
8 minute read
"patients are often suffering silently because there’s a stigma — they may not look like they have a disability. it’s really important for everybody to realize that this is a disability and this affects every aspect of your life every day," says dr. eric benchimol. getty
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taylor morganstein had covid in april 2020, during the early days of all the pandemic strangeness. the virus only affected her gastrointestinal system, “from the gums to the bum,” as it’s commonly referred to by medical experts — this covers all the organs that take in and process your food and then excrete waste products your body can’t use.
“i was in the bathroom all the time, way more than i ever had been,” she says, adding that she had lost a lot of weight. “i was studying the entire summer for a big exam to get into medical school, so i really didn’t think twice about any of these symptoms.”
it wasn’t until the following january that morganstein, now 24 and enrolled in mcgill university’s medical and health sciences program in montreal, realized there was something else going on. she was still running to the bathroom a lot and suffering painful stomach cramps, which she thought might just be anxiety.
“looking back at my initial symptoms, my stools were not normal at all and no one should have been in the bathroom that much,” she says. “i was also getting these very sharp abdominal pains throughout the day, so after eating or not being able to eat because my stomach would hurt while eating. then after a meal, i’d be in the bathroom for an hour, not even going to the bathroom, but just having the urge and feeling like i’m in pain.”
so when she saw her doctor because of a persistent sore elbow, she also offhandedly mentioned her stomach issues.
there’s no cure for ibd
her doctor ran a preliminary test for inflammatory bowel disease or ibd, where the immune system mistakenly damages the lining of your gastrointestinal (gi) tract and completely disrupts your day-to-day ability to digest food, absorb nutrition and eliminate waste in a healthy way. then, morganstein was referred to a gastroenterologist for a colonoscopy to take a closer look at her colon and bowels.
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the diagnosis was life-altering crohn’s disease, setting her up for a roller-coaster of unknowns. were there medications to treat it? would the symptoms get worse? and also, dealing with the constant stress of worrying about being close enough to a bathroom if she needed it.
ibd is an umbrella term for a group of autoimmune diseases, including the two main ones, crohn’s disease and ulcerative colitis. the exact cause isn’t known, although research has found genetics play a role, and risk factors have been linked to the environment and the gut microbiome. there’s no cure, so ibd is a lifelong struggle where people can experience periods of acute symptom flare-ups and then other times when symptoms go into remission, according to crohn’s and colitis canada national health charity. signs to be aware of include severe diarrhea, rectal bleeding, blood in stool, weight loss, exhaustion and joint pain.
number of canadians living with ibd is dramatically rising
in its 2023 impact of inflammatory bowel disease in canada report, crohn’s and colitis canada outlines concerning statistics around the autoimmune disease: 11,000 people will be diagnosed in 2023 (one every 48 minutes) and as many as 14,000 (one in every 38 minutes) by 2035. right now, 0.8 per cent of the population has ibd and that’s expected to jump to 1.1 per cent by 2035.
“there’s a need to help patients understand that they’re not alone,” says dr. eric benchimol, the report’s co-chair. “patients are often suffering silently and not talking about it because there’s a stigma — they may not look like they have a disability. it’s really important for everybody to realize that this is a disability and this affects every aspect of your life every day. our aim is to get them back to a normal quality of life, but it doesn’t always happen. we need to be aware of that.”
the report “is a resource for the entire ibd community, for people living with the diseases and the public to help understand the impact of these diseases in canada,” says lori radke, ceo of crohn’s and colitis canada. supplied
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the report also highlights the need for mental health services for people who are affected by ibd and their families. psychiatric disorders were identified as 1.5 to two times more common in people with ibd compared to the general population, and nearly one-quarter to one-third of people with ibd experience depression or anxiety.
psychiatric disorders, cancer more common in people with ibd
“we don’t know if it’s pain-related or just having a chronic disease or if it’s inflammation affecting the brain,” says benchimol, who is also a professor and a pediatric gastroenterologist at sickkids in toronto. his work is part of a pilot project in hospitals to help transition ibd patients from pediatric to adult care, with health-care professionals helping them build critical skills like mindfulness and resilience to manage ibd.
another key point raised in the report is the incidence of colorectal cancer in this group, occurring 1.5 to two times more often in people with ibd compared to the general population.
for the first time, patient voices shaped the report
what’s different in 2023 from previous iterations of the report is involving the patient: people living with ibd reviewed material and provided feedback on how it reflected the experiences of living with this chronic disease.
“[the report is] not just for government and policymakers, i see it as being a resource for the entire ibd community, for people living with the diseases and the public to help understand the impact of these diseases in canada,” says lori radke, ceo of crohn’s and colitis canada. her mom has lived with ulcerative colitis for more than 50 years and has had two surgeries in the last 10 years after she was diagnosed with colon cancer.
“for my mom, it’s been about living her life very cautiously, it makes it hard at times to leave the house,” she says. “you don’t know what’s going to happen or when your condition is going to get worse.”
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‘let’s talk sh*t’ campaign raises awareness of life with ibd
the organization is also establishing partnerships to generate more awareness in a bolder way about these diseases and how brutal they are to live with. toronto’s lazypants brand has created a line of sweatpants and hoodies that say “let’s talk shit” with a percentage of proceeds supporting ibd research and awareness.
the largest age group living with ibd currently is seniors, both because of the aging population and the fact that people are living longer with the disease. and while ibd-related medications work to suppress the immune system so it won’t inflame the gi tract, these treatments can put seniors at a higher risk of serious infections. they may also be taking additional medications and have other diseases that could interact with ibd, which can complicate how their condition is treated.
“some of the medicines we use might increase the chance of cardiac and cardiovascular problems, heart and blood vessel issues and things like that,” says benchimol. “in fact, even having ibd puts you at increased risk for cardiovascular problems. so if you already have an underlying heart problem and then you add another chronic disease, it becomes extremely complicated.”
new diagnoses of ibd highest in kids under 6
but what’s particularly alarming is the number of new diagnoses in children under the age of six, and the related challenges for them and their families as they age — a change that benchimol has witnessed in his 20 years of pediatric research and practice.
“i remember a time when it was extremely rare, like you would see one [child with ibd] in a year,” he says. “now we see it all the time.”
he says theories behind the ibd spike in young kids surround the western diet and lifestyle, including hygiene, where cleanliness is altering the immune system by changing the microbiome balance of good and bad gut bacteria — when your immune system recognizes that things aren’t right, it overreacts.
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“it becomes a hyperreactive immune system where it’s damaging your bowel and other parts of your body,” says benchimol, adding that living in a greener area with more parks may be protective against the development of ibd. “there’s so much research not only into medicines, but into treatments with diet. we’re trying to understand how diet affects the microbiome and how we can use dietary therapies to get things under control. i think with that, hopefully, one day we will have a cure.”
‘now i’m someone with a chronic illness’
morganstein says her science education and understanding of how the body functions have given her an advantage to coping and staying positive.
“the immune system itself is so complicated that there’s not just one cell in my body that’s wrong. the immune system is millions of cells that are all interacting and it’s very hard to predict,” she says. “i am going to have it forever, and it will probably ebb and flow throughout my whole life. that was my first identity shift where i thought, ‘ok, well, now i’m someone who has a chronic illness.’ i think internalizing that is helpful because i was prepared for the journey.”
months after her diagnosis, she landed in hospital because of a bowel obstruction and later had surgery to remove the parts of her small intestine that were not responding to medication. while this helped her symptoms improve, some stomach issues and joint pain returned earlier this year and she developed psoriasis on her skin. so she wasn’t surprised that a recent colonoscopy showed that the crohn’s had come back.
“it just sucks sometimes,” she says. “sometimes you’re in unfortunate situations and you’re either missing out on life or you’re uncomfortable and it sucks. it was just bad luck to get this disease.”
what has made a difference though, she says, is being candid and open about the health issues she was facing.
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“when i was able to be completely honest about where i was, i was able to get the most specific and detailed support,” says morganstein. “so there is no shame and no need for downplaying or hiding anything. i’m proud that i live with the disease and i can still achieve anything.”
karen hawthorne is a toronto-based writer.
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