{"id":61133,"date":"2025-10-29T14:47:00","date_gmt":"2025-10-29T14:47:00","guid":{"rendered":"https:\/\/cdhf.staging.not4prod.com\/?p=61133"},"modified":"2026-01-07T14:15:44","modified_gmt":"2026-01-07T14:15:44","slug":"ibd-gaps-in-care","status":"publish","type":"post","link":"https:\/\/cdhf.ca\/en\/ibd-gaps-in-care\/","title":{"rendered":"IBD Gaps in Care"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">November is Inflammatory Bowel Disease (IBD) Awareness Month, a time to shed light on the experiences of Canadians living with Crohn\u2019s disease and ulcerative colitis. In this article, we speak with two patients and a leading gastroenterologist to uncover IBD gaps in care that too many face. From long wait times and delayed diagnoses to the emotional and financial strain of managing a chronic illness, their stories reveal a system under pressure, and the resilience of those determined to change it.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The Canadian Digestive Health Foundation (CDHF) is highlighting these stories to raise awareness of the real barriers patients encounter and to advocate for more equitable, accessible, and continuous care for everyone living with IBD.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">For Ashley Patel, those gaps became painfully clear when her symptoms first began.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Ashley Patel describes her journey from first symptoms to her diagnosis of Crohn\u2019s disease as a \u201cwhirlwind.\u201d Her first flare was at age 21. She recalls, \u201cWhen I was turning 24, I was finishing my first semester of med school, and I dropped out because I was going to the bathroom 60 to 70 times a day.\u201d<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Today, Patel is preparing to attend law school. But her journey to health was difficult. Navigating the healthcare system to get a diagnosis left her feeling unheard, lonely, and frightened.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Inflammatory Bowel Disease (IBD) encompasses two main conditions: Crohn\u2019s disease and ulcerative colitis. Symptoms that are common to both include:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Diarrhea<\/li>\n\n\n\n<li>Stomach pain and cramping<\/li>\n\n\n\n<li>Blood in the stool<\/li>\n\n\n\n<li>Loss of appetite<\/li>\n\n\n\n<li>Losing weight without trying<\/li>\n\n\n\n<li>Feeling extremely tired<\/li>\n<\/ul>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/cdhf.ca\/wp-content\/uploads\/2025\/10\/Copy-of-Banners-for-Website-FOR-UBC-STUDENTS-16-1024x461.webp\" alt=\"IBD symptoms of pain\" class=\"wp-image-61134 lazyload\"\/><noscript><img decoding=\"async\" src=\"https:\/\/cdhf.ca\/wp-content\/uploads\/2025\/10\/Copy-of-Banners-for-Website-FOR-UBC-STUDENTS-16-1024x461.webp\" alt=\"IBD symptoms of pain\" class=\"wp-image-61134 lazyload\"\/><\/noscript><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">IBD should not be confused with irritable bowel syndrome (IBS), which does not cause inflammation.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Canada has among the highest rates of IBD in the world. In 2023, <a href=\"https:\/\/doi.org\/10.1093\/jcag\/gwad004\">over 320,000 Canadians<\/a> lived<br>with the condition \u2013 a number projected to reach 470,000 by 2035.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">IBD typically strikes adolescents and young adults, often disrupting education, careers, and relationships during critical life stages.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">While there\u2019s no cure, proper treatment and specialist care can help patients achieve remission and maintain quality of life. But accessing that care? That\u2019s where the system is failing many Canadians.<br><br>For many Canadians like Patel, the journey is lengthy and frustrating.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>The Wait Time Crisis<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Between March 2020 and February 2021, Patel went to the emergency department ten times. She had just started working as a qualitative researcher for an IBD specialist at Mount Sinai Hospital in Toronto and quickly realized she needed a colonoscopy. It took a couple of visits to her family doctor before he would agree to it.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Patel\u2019s colonoscopy confirmed a diagnosis of Crohn\u2019s disease.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u201cA couple of days later, I collapsed because I was about to go into septic shock \u2013 they didn\u2019t know I had an abscess,\u201d she recalls.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">She spent a week in hospital as doctors treated severe complications, including a dangerous narrowing of her bowel. Nine months later, Patel underwent surgery to remove the damaged section.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u201cThat\u2019s where the journey kind of ends \u2013 at least when it comes to the suffering,\u201d she says.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Similarly, Steve Holbrook\u2019s path to diagnosis was marked by years of uncertainty.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Holbrook has had IBD symptoms since birth, according to his mother. He had <a>frequent<\/a> bloody stools, and doctors knew immediately something was wrong with his digestive system.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u201cThen what happened when I was two, is my joints got so swollen, I stopped walking,\u201d Holbrook says.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">He crawled everywhere. The reason? Severe rheumatoid arthritis.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Between the ages of 2 and 6, Holbrook underwent extensive testing. At age 6, he was diagnosed with ulcerative colitis, which doctors believed had contributed to his arthritis. That diagnosis was later changed to Crohn\u2019s disease.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Holbrook tried multiple medications over the years with some success. But by January 2009, at age 27, his illness became life-threatening. Doctors told him his rectum would need to be removed or he would die.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">That January, Holbrook had part of his colon removed. Hospital overcrowding meant he spent two weeks in a hallway with only a curtain for privacy.<br>\u201cI was learning to live with an ostomy, permanent ostomy and output, it was nasty,\u201d Holbrook says.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Over 11 months, surgeons removed his rectum, colon and part of his small bowel. Since then, Holbrook\u2019s Crohn\u2019s has been in remission without medication.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Holbrook\u2019s and Patel\u2019s stories reflect the systemic gaps in IBD care across Canada.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Systemic Gaps in Care<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Dr. Parul Tandon, Gastroenterologist and Clinician Scientist, Inflammatory Bowel Diseases at University Health Network, identifies the biggest gap as access to a gastroenterologist that specializes in IBD.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">On average, wait times are about three months, though patients experiencing flares may be seen sooner.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Access varies by location. <a href=\"https:\/\/doi.org\/10.2147\/CLEP.S178056\">Rural patients face greater challenges<\/a> reaching specialists. For immigrants navigating a new healthcare system, access becomes even more difficult.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Timely access is one challenge. Ongoing follow-up is another.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">IBD requires lifelong care, yet less than 50% of patients see a specialist annually for five years.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Comprehensive IBD care should include:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Annual appointments with an IBD-trained specialist<\/li>\n\n\n\n<li>Timely access to diagnostic testing<\/li>\n\n\n\n<li>Coordination between family doctors and gastroenterologists<\/li>\n\n\n\n<li>Mental health support<\/li>\n\n\n\n<li>Nutritional counselling<\/li>\n<\/ul>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/cdhf.ca\/wp-content\/uploads\/2025\/10\/Copy-of-Banners-for-Website-FOR-UBC-STUDENTS-17-1024x461.webp\" alt=\"wait times being an IBD gap in care\" class=\"wp-image-61136 lazyload\"\/><noscript><img decoding=\"async\" src=\"https:\/\/cdhf.ca\/wp-content\/uploads\/2025\/10\/Copy-of-Banners-for-Website-FOR-UBC-STUDENTS-17-1024x461.webp\" alt=\"wait times being an IBD gap in care\" class=\"wp-image-61136 lazyload\"\/><\/noscript><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">\u201cNumerous studies have demonstrated that early access to care and continuous care does improve outcomes \u2013 it keeps patients out of the emergency department, out of the hospital, reduces corticosteroid use, and potentially reduces other downstream complications like dysplasia (abnormal cells in colon lining) and surgery,\u201d Dr. Tandon says.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Beyond specialist shortages, diagnostic testing presents another significant hurdle. The growing demand for CT scans, MRIs, and ultrasounds means longer waits for IBD patients. Dr. Tandon notes that in downtown Toronto, a specialized MRI scan to examine the small bowel can take up to a year.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Once diagnosed and connected with specialists, patients face yet another barrier: cost.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Medication Access Barriers<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Medications to treat IBD can be very expensive for people who do not have private insurance or the funds to pay for them.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">&nbsp;\u201cIn the increasing inflation era that we live in with increasing rent and mortgage costs, and groceries, paying $300 to $400 a month can be a huge obstacle,\u201d Dr. Tandon says.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Without insurance, many patients cannot access safer advanced therapies. Their disease may progress because they cannot afford treatment. The financial burden extends to families managing pediatric IBD.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Young patients also face unique challenges obtaining newer treatments.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Holbrook has two children with Crohn\u2019s disease. Many children still rely on medications Holbrook used 20 years ago, like prednisone and Remicade. Parents face significant barriers accessing newer treatments.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u201cSome of the drugs that we had to beg them (doctors) to put my son on, were not approved for kids,\u201d Holbrook says. \u201cWe were signing waivers and signing our way.\u201d<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Breaking the Silence<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Despite these healthcare challenges, people like Patel and Holbrook are refusing to stay silent.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Many people with IBD suffer alone. \u201cCrohn\u2019s is not a sexy disease. It\u2019s not glamorous,\u201d Holbrook says. \u201cA lot of people with Crohn\u2019s suffer in silence.\u201d<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Patel knows that isolation firsthand. \u201cThat journey of getting to diagnosis is so painfully lonely,\u201d she says. \u201cIn the midst of all the pain\u2014mentally, physically, emotionally\u2014I cut off so many people from my life.\u201d<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">But silence only deepens the struggle. Patel\u2019s advice to anyone facing IBD: \u201cYou\u2019re not alone. Talk to someone. You don\u2019t have to shout it to the world.\u201d<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Holbrook has made his advocacy visible. His Instagram bio identifies him as a Crohn\u2019s disease advocate. \u201cI want people to know I have Crohn\u2019s disease, and it\u2019s okay to talk about it.\u201d<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>A Community Coming Together<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">That openness is creating change. Across Canada, patients, caregivers, and healthcare providers are joining forces to improve IBD care.<br><br>\u201cEverybody is coming together, including our patient partners,\u201d Dr. Tandon says. They\u2019re advocating for system change\u2014through petitions, pushing for new diagnostic technology like intestinal ultrasound, or demanding better medication funding.<br><br>Holbrook embodies this spirit of progress. Despite decades of struggle, he constantly asks himself: \u201cHow can I be a better father, a better husband, and a better Crohn\u2019s disease advocate?\u201d<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Patel sees this advocacy as essential. \u201cEveryone\u2019s story is different, but somehow our diagnosis names are the same,\u201d she says. \u201cI want to learn your experiences and share mine, so we can build a better future.\u201d<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">These stories show that change begins when people come together- patients, doctors, caregivers, and advocates alike.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">As awareness grows and conversations continue, there is real hope for a future where every Canadian living with IBD has access to timely diagnosis, effective treatment, and ongoing support.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">CDHF remains committed to making that vision a reality, one story and one action at a time.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Hear from IBD Patients Themselves<\/h2>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-9-16 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"Ashley Patel, MHIA: A Patient\u2019s Perspective on Gaps in IBD Care\" width=\"422\" height=\"750\" src=\"https:\/\/www.youtube.com\/embed\/aoBuPSNLZyE?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-9-16 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"Gaps in IBD Care: Ashley Freeborn, Co-Founder &amp; CEO Smash + Tess Shares Her Experience\" width=\"422\" height=\"750\" src=\"https:\/\/www.youtube.com\/embed\/505cMyE3pYM?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-9-16 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"Steve Holbrook: A Patient\u2019s Perspective on Gaps in IBD Care\" width=\"422\" height=\"750\" src=\"https:\/\/www.youtube.com\/embed\/DlKIpd6NPtM?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n<\/div>\n<\/div>\n\n\n<div class=\"gradient-divider\"><\/div><div class=\"sponsor-block\"><p><p style=\"margin-left:0.5rem;text-align:center;\"><strong>This initiative was made possible through the support of Pfizer Canada ULC and Fresenius Kabi&nbsp;<\/strong><\/p><\/p><div class=\"sponsor-details\"><div class=\"photo\" >\n<a target=\"_blank\" href=\"https:\/\/www.pfizer.ca\"><img decoding=\"async\" class=\"lazyload\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/cdhf.ca\/wp-content\/uploads\/2022\/08\/Pfizer.webp\"  \/><noscript><img decoding=\"async\" class=\"lazyload\" src=\"https:\/\/cdhf.ca\/wp-content\/uploads\/2022\/08\/Pfizer.webp\"  \/><\/noscript><\/a>\n<\/div>\n        <div class=\"photo\" >\n<a target=\"_blank\" href=\"https:\/\/www.fresenius-kabi.com\/en-ca\/products\/kabicare\"><img decoding=\"async\" class=\"lazyload\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/cdhf.ca\/wp-content\/uploads\/2022\/08\/Fresenius-Kabi-Logo.webp\"  \/><noscript><img decoding=\"async\" class=\"lazyload\" src=\"https:\/\/cdhf.ca\/wp-content\/uploads\/2022\/08\/Fresenius-Kabi-Logo.webp\"  \/><\/noscript><\/a>\n<\/div>\n        <\/div><\/div>\n\n\n<p class=\"wp-block-paragraph\"><strong>References:<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Benchimol, E. I., Kuenzig, M. E., Bernstein, C. N., Nguyen, G. C., Guttmann, A., Jones, J. L., Potter, B.K., Targownik, L. E., Catley, C.A., Nugent, Z.J., Tanyingoh, D., Mojaverian, N., Underwood, F.E., Siddiq, S., Otley, A.R., Bitton, A., Carroll, M.W., DeBruyn, J.C., Dummer, T.J.B., . . . Kaplan, G. G. (2018). Rural and urban disparities in the care of Canadian patients with inflammatory bowel disease: a population-based study. <em>Clinical Epidemiology<\/em>, <em>10<\/em>, 1613\u20131626. <a href=\"https:\/\/doi.org\/10.2147\/CLEP.S178056\">https:\/\/doi.org\/10.2147\/CLEP.S178056<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Coward, S., Benchimol, E. I., Kuenzig, M. E., Windsor, J. W., Bernstein, C. N., Bitton, A., Jones, J. L., Lee, K., Murthy, S. K., Targownik, L. E., Pe\u00f1a-S\u00e1nchez,J-N., Rohatinsky, N., Ghandeharian, S., Im, J. H. B., Davis, T., Weinstein, J., Goddard, Q., Gorospe, J., Bennett, J., . . . Kaplan, G. G. (2023). The 2023 Impact of Inflammatory Bowel Disease in Canada: Epidemiology of IBD. <em>Journal of the Canadian Association of Gastroenterology<\/em>, <em>6<\/em>(Suppl 2), S9\u2013S15. <a href=\"https:\/\/doi.org\/10.1093\/jcag\/gwad004\">https:\/\/doi.org\/10.1093\/jcag\/gwad004<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>November is Inflammatory Bowel Disease (IBD) Awareness Month, a time to shed light on the experiences of Canadians living with Crohn\u2019s disease and ulcerative colitis. In this article, we speak with two patients and a leading gastroenterologist to uncover IBD gaps in care that too many face. From long wait times and delayed diagnoses to [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":61139,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"cdhf2022_sponsors_meta":[],"footnotes":""},"categories":[60],"tags":[52],"class_list":["post-61133","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-article","tag-tags-ibd"],"acf":{"article_writer":[61141]},"featured_image_src":"https:\/\/cdhf.ca\/wp-content\/uploads\/2025\/10\/Copy-of-Banners-for-Website-FOR-UBC-STUDENTS-18.webp","author_info":{"display_name":"Kelsey Cheyne","author_link":"https:\/\/cdhf.ca\/en\/author\/kelsey-cheyne\/"},"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.1.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>IBD Gaps in Care - Canadian Digestive Health Foundation<\/title>\n<meta name=\"description\" content=\"In this article, we speak with two patients and a leading gastroenterologist to uncover IBD gaps in care that too many face.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/cdhf.ca\/en\/ibd-gaps-in-care\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"IBD Gaps in Care - 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