crohn's disease in canada: stats, impact and resources
11 minute read
according to recent research on crohn’s disease and ibd, canada has the highest burden of ibd out of anywhere in the world.
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roughly 825 per 100,000 canadians have inflammatory bowel disease (ibd). ibd is an umbrella term for crohn’s disease and ulcerative colitis (uc). out of those 825 canadians, roughly 410 per 100,000 people with ibd have crohn’s disease. rates of ibd continue to rise in the country, specifically in children, but experts have yet to find a direct reason why.
crohn’s disease cases continue to multiply across the country. it’s estimated that by 2035, close to half a million canadians will be diagnosed with ibd in the country, putting the growth rate of the disease at 2.44 per cent per year.
crohn’s disease and other ibd conditions aren’t as openly talked about as others due to the widespread feelings of shame, embarrassment, or a general sense of negativity surrounding the condition and its symptoms.
while there is nothing to be ashamed of, as it’s a medical disorder like any other, many people are diagnosed during adolescence, a time when frequent bathroom breaks are more prone to judgment or social humiliation from peers than if it were to occur during adulthood or early childhood.
according to research, roughly 600 to 650 children under the age of 16 are diagnosed with ibd each year, and the rapid increase in young people is so significant that numbers have doubled in this age group since the early 2000s.
with the number of cases growing exponentially, keeping up is challenging. current treatments, while viable, do not work for everyone and come with many side effects. many people forgo therapy for as long as possible, as well, to avoid having to acknowledge the diagnosis in a real and tangible way.
current therapies and awareness continue to shed light on crohn’s disease in the country in the hopes that the stigma and those suffering from symptoms can live a higher quality of life regardless of their diagnosis.
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what is crohn’s disease?
crohn’s disease is a complex immune-mediated condition that belongs to a group of diseases known as ibd. there is no cure for crohn’s, and those who are diagnosed must live with it for life.
while it mainly affects the entire digestive tract, from the mouth to the anus, it can also affect the health of other bodily systems, known as extraintestinal manifestations, if it is left unchecked. the main issue that drives damage in crohn’s disease is inflammation. the inflammation in the body damages tissue throughout the digestive tract, leading to symptoms and, in some cases, life-altering complications.
the signs of crohn’s disease can vary from person to person, but mainly consist of:
- pain in the abdomen
- anemia
- chronic diarrhea
- fatigue
- fever
- fistulas, which are abnormal growths of tissue connecting two organs
- weight loss
- stunted growth, puberty delays, and bone deficits in children
as mentioned above, the disease can also lead to issues with other bodily systems and organs. for example, crohn’s disease can affect the eyes, leading to various inflammatory eye disorders such as uveitis, scleritis, and episcleritis.
other adverse health effects driven by crohn’s disease in some people include:
- joint pain due to inflammation
- liver disease, such as primary sclerosing cholangitis
- skin conditions, including erythema nodosum and pyoderma gangrenosum
the areas of the body affected by crohn’s will vary depending on how the disease reaches different areas of the body. no two people are the same; their crohn’s isn’t either. because of that, people with crohn’s have to contend with unique manifestations of the disease, making it more challenging to treat.
the cause of crohn’s isn’t well understood, although researchers have pinpointed a genetic component and other factors that contribute to its development. people thought to have a gene for ibd are more likely to develop crohn’s as the immune system does not react appropriately to something in the digestive tract. other factors that go into the development of the disease include:
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- air pollution
- overuse of antibiotics
- poor diet
- living in a developed country
- vitamin d deficiencies
- overuse of non-steroidal anti-inflammatories (nsaids) such as advil and aleve
- smoking cigarettes
- dysbiosis, or disturbance, to the balance of the microbiome
- faulty immune reaction
while crohn’s disease is lifelong, it goes through periods of dormancy and flare-ups. a person may experience no symptoms for a prolonged period, only to experience mild to severe symptoms shortly after, followed by another remission. typically, remission occurs only after a person takes the necessary steps regarding treatment.
current crohn’s disease statistics in canada
according to recent research on crohn’s disease and ibd, canada has the highest burden of ibd out of anywhere in the world. that means that ibd has the worst impact on canadians and leads to the most disability. the commonality of the disorder has given crohn’s disease more attention in recent years, especially considering the staggering growth rate since the early 2000s. reports estimate that by 2035, over 1 per cent of the canadian population will be diagnosed with ibd.
people of any age can be diagnosed with crohn’s disease, and the steady incline of cases continues to affect people of all ages. when broken down, two age groups seem to be the most affected and are projected to experience the most significant growth over the next decade—children under six and older adults. the predictive analysis found that cases will almost double from 841 per 100,000 older canadians in 2014 to 1534 per 100,000 older canadians in 2035.
a surge of new ibd cases in children was found by the 2023 impact of inflammatory bowel disease in canada report put out by crohn’s and colitis canada. while the exact number of crohn’s cases in children is lumped in with other ibds, the information has found that early childhood-onset ibd has risen significantly. currently, it’s estimated that roughly 9.68 per 100,000 canadian children under the age of 16 have been diagnosed with some form of ibd. those most affected by this surge are children under the age of six. crohn’s disease and ibd in children are remarkably different than those in adults in severity, location, and adverse effects on other markers of overall health.
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while crohn’s disease and ibd used to affect caucasians of european descent primarily, it is now known that all ethnic groups and populations are diagnosed with crohn’s disease at similar rates. since most cases are found in developed countries, immigrants, children of immigrants, and those belonging to indigenous populations are also just as affected by the disease as caucasians.
people of any sex are also equally affected by crohn’s disease. the comparison ratio between males and females is 1 to 1.3, respectively. that said, there are some differences in how the disease affects males versus females. for example, males are likely to be diagnosed before adolescence, whereas females are typically diagnosed with crohn’s once they’ve reached adulthood. it’s thought that sex hormones may play a role, but more research is needed to confirm precisely how sex and age play a role when it comes to hormonal changes and crohn’s disease.
impact of crohn’s disease on canadian society
when looking at canadian society and crohn’s disease, it’s found that the burden of disease is quite high. direct and indirect costs play a prominent role in how the disease affects canadians on a personal and societal level. because the rates of crohn’s disease continue to rise, costs associated with treatment and other healthcare maintenance grow alongside them.
in less than six years, costs associated with ibd have almost doubled from $2.57 billion to $5.38 billion in canada. the increased prevalence of crohn’s and ibd isn’t the only piece of the puzzle, though. inflation rates that have skyrocketed in the last few years have also contributed to the significant cost jump.
direct costs are how much it will take to treat crohn’s with medications and how much it costs the healthcare system to care for people with the disease. indirect costs are more personal and revolve around how much it costs the individual to care for themselves with crohn’s disease. this could include time off work, caregiver costs, and unemployment due to disease severity. accumulatively, people with crohn’s and ibd can expect to pay upwards of $1.51 billion in 2023 collectively for indirect costs, with expenses totalling:
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- unemployment: $1.14 billion
- missing work or being unable to work while at the job: $285 million
- caregiving: $58 million
- medications and supportive care not covered by ohip or insurance: $536 million
the direct costs include hospitalizations due to symptoms, visits to the er, outpatient visits, tests and imaging, and medications covered by ohip. reports found these costs in 2023 to be a staggering $3.33 billion. biologics used to treat crohn’s disease affected the high cost of caring the most, accounting for roughly 50 per cent of all direct healthcare costs in 2017.
people belonging to lower socio-economic status were more likely to need extra financial services to help care for their crohn’s disease. they were also more likely to be hospitalized, put into intensive care, and be at an increased risk of surgery. while there is no definitive reason as to why, the high cost of viable medications may play a role in these factors.
social impact of crohn’s on relationships, mental health, and risk of other diseases
the stigma surrounding crohn’s disease and its associated symptoms can make life difficult for those who have it. relationships, especially, may suffer. because of the ailments and frequent need to use the bathroom, many people with crohn’s disease experience a decline in relationship satisfaction due to how it affects how they see their bodies, their sex lives and libido, and their ability to perform daily tasks or go on dates with ease during a flare-up.
the condition can also affect relationships because it can change how a person sees their future. for example, many people of childbearing age have valid concerns about having children after being diagnosed with ibd. the impact of crohn’s, how it will affect pregnancy outcomes and the delivery process, and how ibd medications can affect an unborn child are all reasons for concern among people who wish to have children but are not sure if it’s a possibility for them after receiving a crohn’s diagnosis. according to reports, as many as 17 per cent of females choose to forgo having children because of these factors.
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people with crohn’s disease and other forms of ibd are also 1.5-2 times more likely to develop a co-occurring psychiatric disorder when compared to the general population. women, especially, are the most affected by mental health struggles driven by crohn’s disease. they are 50 per cent more likely to be diagnosed with anxiety or depression alongside their ibd. of the total number of canadians who have crohn’s disease, roughly 21 per cent will also have clinical anxiety, and 15 per cent will also have clinical depression. young adults and youth are the most afflicted by these co-occurring disorders.
crohn’s is associated with an increased risk of mental health disorders for several reasons. people with crohn’s have to cope with symptoms that often have them embarrassed, which can lead to feelings of shame and negative thinking. anxiety about the future and depression about their current situation is hard to ignore for people with crohn’s disease. other possible factors that play into the development of mental health disorders in people with crohn’s include:
- inflammation
- changes to the gut microbiota that affect mood
- chronic stress about their condition and coping with symptoms
- use of medications that affect mood, such as corticosteroids
crohn’s disease is also associated with an increased risk of developing other conditions, including cancer. these can be due to the disease itself, complications of the illness, or medical treatments. some cancers and their correlated risk factor include:
- colorectal: disease activity
- extra-intestinal cancers: immunosuppressant medications
- lymphoma and non-melanoma skin cancer: immunosuppressant medications
- hepatobiliary cancer: associated with complications of crohn’s, specifically primary sclerosing cholangitis
- lung cancer: unknown connection; research is ongoing
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while having crohn’s disease does not guarantee a person will develop any of the cancers mentioned above, the medications and illness can lead to an increased risk.
resources available for crohn’s disease in canada
with cases on the rise, resources for crohn’s continue to provide support and other services to help improve awareness, quality of life, and knowledge surrounding a crohn’s diagnosis. with such high costs associated with the disease, these resources are more critical than ever. people need to have access to organizations that can help them figure out where to go if they need support, whether it be personal or financial.
crohn’s & colitis canada features a support section on their website that can help point people in the right direction when they need help with their crohn’s diagnosis. they can provide:
- links to apps that can help manage crohn’s disease as well as find washrooms while out in the world to lessen the anxiety about being able to find a restroom if need be
- information surrounding crohn’s disease put forth by experts in the field
- series and webinars for people with crohn’s disease interested in learning more about their disease, its progression, and what they can do to help themselves
- access to groups to connect with others who also have been diagnosed with crohn’s disease
- links to camp got 2 go, a youth summer camp for those who have ibd
these resources allow people of any age to connect to the right individuals or healthcare experts, make their lives easier by managing the disease in apps, and educate themselves so that they are as armed as possible while caring for their crohn’s disease.
the future of crohn’s disease in canada
rates of crohn’s disease are rising significantly in the country. because of that, costs and the burden on the healthcare system will also continue to grow. the impact on people, both personally and on a societal level, will continue to take a hit because treatments, although viable, continue to leave gaps in the symptoms and pose other health risks.
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dr. gil kaplan, expert gastroenterologist and professor at the university of calgary, told global news, “the goal of the report (published by crohn’s and colitis canada) is to essentially improve the quality of life of people living with ibd while preparing our healthcare system of the rising burden of ibd in canada.”
the added strain on the country because of the rise of crohn’s disease can hinder people from experiencing the best care possible and, thus, the best quality of life attainable.
“the number of people in canada living with ibd is growing rapidly. healthcare needs to evolve to include multidisciplinary care, including access to specialist nurses, mental health professionals, dietitians, and others to improve quality of life,” dr. kaplan told crohn’s and colitis canada.
the only way to address the issue is by training more gastroenterologists, improving access to care and medications for those of lower socio-economic status, and exploring various ways to address the disease, its symptoms, and a person’s ability to live with it comfortably.
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