IBD Gaps in Care

Written by: Marina Rowbotham

Updated: January 7th, 2026

November is Inflammatory Bowel Disease (IBD) Awareness Month, a time to shed light on the experiences of Canadians living with Crohn’s 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.

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.

For Ashley Patel, those gaps became painfully clear when her symptoms first began.

Ashley Patel describes her journey from first symptoms to her diagnosis of Crohn’s disease as a “whirlwind.” Her first flare was at age 21. She recalls, “When 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.”

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.

Inflammatory Bowel Disease (IBD) encompasses two main conditions: Crohn’s disease and ulcerative colitis. Symptoms that are common to both include:

Diarrhea
Stomach pain and cramping
Blood in the stool
Loss of appetite
Losing weight without trying
Feeling extremely tired

IBD should not be confused with irritable bowel syndrome (IBS), which does not cause inflammation.

Canada has among the highest rates of IBD in the world. In 2023, over 320,000 Canadians lived
with the condition – a number projected to reach 470,000 by 2035.

IBD typically strikes adolescents and young adults, often disrupting education, careers, and relationships during critical life stages.

While there’s no cure, proper treatment and specialist care can help patients achieve remission and maintain quality of life. But accessing that care? That’s where the system is failing many Canadians.

For many Canadians like Patel, the journey is lengthy and frustrating.

The Wait Time Crisis

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.

Patel’s colonoscopy confirmed a diagnosis of Crohn’s disease.

“A couple of days later, I collapsed because I was about to go into septic shock – they didn’t know I had an abscess,” she recalls.

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.

“That’s where the journey kind of ends – at least when it comes to the suffering,” she says.

Similarly, Steve Holbrook’s path to diagnosis was marked by years of uncertainty.

Holbrook has had IBD symptoms since birth, according to his mother. He had frequent bloody stools, and doctors knew immediately something was wrong with his digestive system.

“Then what happened when I was two, is my joints got so swollen, I stopped walking,” Holbrook says.

He crawled everywhere. The reason? Severe rheumatoid arthritis.

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’s disease.

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.

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.
“I was learning to live with an ostomy, permanent ostomy and output, it was nasty,” Holbrook says.

Over 11 months, surgeons removed his rectum, colon and part of his small bowel. Since then, Holbrook’s Crohn’s has been in remission without medication.

Holbrook’s and Patel’s stories reflect the systemic gaps in IBD care across Canada.

Systemic Gaps in Care

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.

On average, wait times are about three months, though patients experiencing flares may be seen sooner.

Access varies by location. Rural patients face greater challenges reaching specialists. For immigrants navigating a new healthcare system, access becomes even more difficult.

Timely access is one challenge. Ongoing follow-up is another.

IBD requires lifelong care, yet less than 50% of patients see a specialist annually for five years.

Comprehensive IBD care should include:

Annual appointments with an IBD-trained specialist
Timely access to diagnostic testing
Coordination between family doctors and gastroenterologists
Mental health support
Nutritional counselling

“Numerous studies have demonstrated that early access to care and continuous care does improve outcomes – 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,” Dr. Tandon says.

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.

Once diagnosed and connected with specialists, patients face yet another barrier: cost.

Medication Access Barriers

Medications to treat IBD can be very expensive for people who do not have private insurance or the funds to pay for them.

“In 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,” Dr. Tandon says.

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.

Young patients also face unique challenges obtaining newer treatments.

Holbrook has two children with Crohn’s disease. Many children still rely on medications Holbrook used 20 years ago, like prednisone and Remicade. Parents face significant barriers accessing newer treatments.

“Some of the drugs that we had to beg them (doctors) to put my son on, were not approved for kids,” Holbrook says. “We were signing waivers and signing our way.”

Breaking the Silence

Despite these healthcare challenges, people like Patel and Holbrook are refusing to stay silent.

Many people with IBD suffer alone. “Crohn’s is not a sexy disease. It’s not glamorous,” Holbrook says. “A lot of people with Crohn’s suffer in silence.”

Patel knows that isolation firsthand. “That journey of getting to diagnosis is so painfully lonely,” she says. “In the midst of all the pain—mentally, physically, emotionally—I cut off so many people from my life.”

But silence only deepens the struggle. Patel’s advice to anyone facing IBD: “You’re not alone. Talk to someone. You don’t have to shout it to the world.”

Holbrook has made his advocacy visible. His Instagram bio identifies him as a Crohn’s disease advocate. “I want people to know I have Crohn’s disease, and it’s okay to talk about it.”

A Community Coming Together

That openness is creating change. Across Canada, patients, caregivers, and healthcare providers are joining forces to improve IBD care.

“Everybody is coming together, including our patient partners,” Dr. Tandon says. They’re advocating for system change—through petitions, pushing for new diagnostic technology like intestinal ultrasound, or demanding better medication funding.

Holbrook embodies this spirit of progress. Despite decades of struggle, he constantly asks himself: “How can I be a better father, a better husband, and a better Crohn’s disease advocate?”

Patel sees this advocacy as essential. “Everyone’s story is different, but somehow our diagnosis names are the same,” she says. “I want to learn your experiences and share mine, so we can build a better future.”

These stories show that change begins when people come together- patients, doctors, caregivers, and advocates alike.

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.

CDHF remains committed to making that vision a reality, one story and one action at a time.

Hear from IBD Patients Themselves

References:

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. Clinical Epidemiology, 10, 1613–1626. https://doi.org/10.2147/CLEP.S178056

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., Peña-Sánchez,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. Journal of the Canadian Association of Gastroenterology, 6(Suppl 2), S9–S15. https://doi.org/10.1093/jcag/gwad004