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survey highlights mental health struggles for canadians living with inflammatory bowel disease

the survey, part of takeda's 300,000 reasons why campaign, found that two-thirds of canadians living with ibd have experienced mental health issues because of their disease.

ibd is not only a complex chronic disease, it is unpredictable. the term ibd is an umbrella term for a group of conditions that involve inflammation of the small or large intestines. getty images
what if you lived with persistent diarrhea, abdominal pain and fatigue that limited how you did your job and affected every social outing or activity? you need to be able to have a bathroom nearby. you have to deal with the stigma of gastrointestinal problems that some people dismiss as emotional stress. living with inflammatory bowel disease (ibd) has significant challenges, long after you’ve finally been diagnosed. the disease is hard for doctors to pin down, because it can affect different parts of the gastrointestinal tract, so not everyone has the same symptoms. it can also cause bloody stools, nausea and vomiting, weight loss, and inflammation that results in possible joint pain and skin irritation. it’s complicated and the incidence is rising. there are about 300,000 canadians living with ibd, with the number projected to grow to 470,000 by 2035, according to a 2023 report on the impact of ibd on canada’s healthcare system and medication costs.
new survey data released by pharmaceutical company takeda reveals the impact ibd has on canadians, ranging from how the disease affects daily life activities, the challenges to timely access to care and treatment, and what’s being flagged as the unmet need to prioritize mental health support for people living with ibd.
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the survey, part of takeda’s 300,000 reasons why campaign, found that two-thirds of canadians living with ibd have experienced mental health issues because of their disease, with half reporting feelings of anxiety. as many as seven in 10 people have felt the social impacts of limiting intimate relationships, connections with family and friends, and the ability to participate in activities. and 90 per cent of people reported that decreased productivity and missed time affected their school or work.
“during my last flare i started feeling the full effect of this diseases on my mental health — from losing my job, feelings of isolation, failed therapies and the impact on my family – it was just all becoming too much,” carla bertelli, a patient living with ibd from calgary, alberta said in a news release about the survey data. “when i raised concerns with my doctor, no support or resources were provided – they weren’t equipped to treat the whole person.”
ibd is not only a complex chronic disease, it is unpredictable. the term ibd is an umbrella term for a group of conditions that involve inflammation of the small or large intestines. crohn’s disease (cd) and ulcerative colitis (uc) are the two most common forms. it can strike at any age, but is most commonly diagnosed between the ages of 15 and 40, says crohn’s and colitis canada.
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broad understanding of ibd is lacking, and there is confusion of ibd with ibs, irritable bowel syndrome, which is a distinct disorder with some similar gastrointestinal symptoms that can be chronic or episodic. ibs is not linked to systemic inflammation but is a group of symptoms possibly caused by food intolerance or gut microbe imbalances.
for the project, leger market research surveyed 251 canadians from august 21 to 28, 2024, which included 130 people living with ibd and 121 caregivers for people with ibd. the 300,000 reasons why campaign aims to create awareness around the need to address the challenges faced by canadian ibd patients and improve the standard of care. its findings demonstrate the often-overlooked mental health impacts of ibd and how they affect various aspects of patients’ lives.
the survey also revealed that three in four canadians say there is insufficient mental health support for those living with ibd. nine in 10 ibd patients indicate that mental health support should be an important part of ibd treatment.
in fact, medical experts say there is a link between patient mental health, symptoms, quality of life and overall treatment outcomes.
as dr. yvette leung, associate clinical professor of gastroenterology at the university of british columbia pointed out in the news release: “investing in an integrated care approach will help us address all facets of patient care – from training physicians and nurses to identify symptoms earlier, to having robust treatments options to allow for personalized care and patient choice, to addressing the real need for psychological support that is associated with chronic diseases like ibd.”
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other challenges highlighted by the survey include delays in diagnosis and access to care:
  • three in four report challenges in accessing adequate and timely medical care
  • seven in 10 patients report having to try other medications before finding one that worked
  • 81 per cent of canadians have experienced negative health impacts from disease challenges like worsened symptoms and compounding medical issues
    “a holistic approach to care is vital to ensure that patients have access to the care they need, including mental health supports,” vatro mateljic, general manager of takeda in canada, noted in the release. “as the prevalence of ibd is set to rise in canada over the next decade, we hope that highlighting these key challenges can help shape and elevate the future of ibd care that meet the needs of canadian patients.”
    for more about the data results and the importance of mental health and ibd, click here.
    karen hawthorne
    karen hawthorne

    karen hawthorne worked for six years as a digital editor for the national post, contributing articles on health, business, culture and travel for affiliated newspapers across canada. she now writes from her home office in toronto and takes breaks to bounce with her son on the backyard trampoline and walk bingo, her bull terrier.

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