Rise in IBD among young kids ‘baffling’ experts. What’s behind the surge?

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NS Woman Shares Her Journey Living with Crohn’s and Colitis
WATCH: Heather Fegan was diagnosed with Crohn’s disease 25 years ago when she was just 14. Since then, she’s been working tirelessly to spread awareness about the illness by speaking openly about her experience with f inflammatory bowel disease – Nov 3, 2021

Canada has one of the highest rates of inflammatory bowel disease (IBD) in the world, and that number is likely to dramatically increase in the next decade, especially among children, according to a recent report.

The 2023 report, released June 1 by Crohn’s and Colitis Canada, found a surge of new cases of IBD among children under the age of six over the past five years, warning the disease can lead to growth stunting, delay of puberty and deficits in bone development.

IBD, which includes ulcerative colitis and Crohn’s disease, is a chronic inflammatory disorder of the gastrointestinal (GI) tract. It can lead to debilitating symptoms such as diarrhea, rectal bleeding, abdominal pain, fatigue, weight loss and potentially life-threatening complications, according to the Canadian Digestive Health Foundation.

“We are seeing that the number of new diagnoses made year after year still continues to climb in children and adolescents with inflammatory bowel disease,” Dr. Gil Kaplan, gastroenterologist and professor at the University of Calgary, said.

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Click to play video: 'How you can help with research into Crohn’s and Colitis through the Gutsy Walk'
How you can help with research into Crohn’s and Colitis through the Gutsy Walk

“And one of the big impacts of that is this is a chronic, incurable disease. So if you’re diagnosed at age 15 with inflammatory bowel disease, this disease is with you and you’re going to be managed within the health-care system for the rest of your life.”

In 2018, around 270,000 Canadians were living with IBD. That number increased to 322,600 (0.8 per cent of the population) in 2023, the Crohn’s and Colitis Canada, report stated. The number is forecast to rise by 2.44 per cent every year, meaning in 2035, 470,000 Canadians (1.1 per cent of the population) could be living with IBD.

The rising number of people being diagnosed with the disease is largely driven by pediatric-onset IBD, the authors of the report stated. They noted the rate among Canadian youth has been growing at an average 1.23 per cent year-over-year. If that trend continues, that means the IBD rate could climb from 15.6 per 100,000 Canadian kids in 2023 to potentially 18 per 100,000 in 2035.

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Part of the reason IBD is growing in numbers is because people are also living longer and there are more treatment options, explained Lori Radke, the president and CEO of Crohn’s and Colitis Canada.

“So one of our highest growing segments is seniors because they’re living longer,” she said.

However, she noted that while older Canadians make up the largest portion of individuals living with IBD, the most significant increase in cases is still observed among children under the age of six, which she finds “baffling.”

What causes IBD?

IBD is essentially a disease of modern times, explained Kaplan, who is also a co-chair of the study.

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Colitis was first recognized in the late 1800s and Crohn’s disease was first described in the 1930s.

“And since then, new diagnoses were made year after year in the Western world — North America, Europe, Australia, New Zealand — at the latter half of the 20th century,” he said.

“At the turn of the 21st century, the countries that were outside of the Western world, which in the 20th century had virtually no cases … as they have become more Westernized … we have now started to see the rise of both Crohn’s disease and ulcerative colitis in newly industrialized countries in Asia and Latin America,” Kaplan said.

Although the exact cause of IBD is still not fully understood, he said the scientific community believes driving factors for IBD may include an interaction between genes (certain genetic variations can increase an individual’s susceptibility), the environment and the microbiome (the healthy bacteria in your gut).

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Lack of bathrooms a big issue for people living with Crohn’s and Colitis

Smoking, pollutants and antibiotic use are just some of the environmental factors that may increase a person’s risk of getting IBD. But the one factor most strongly associated with changes in the microbiome and the increased risk of IBD is the “standard Western diet,” Kaplan said.

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“The diets we consume today are significantly different from those of previous generations, including our grandparents’ generation. As societies become more westernized and adopt these dietary changes, it appears to act as a catalyst for the emergence of immune-mediated diseases, as observed in the case of inflammatory bowel disease.”

This includes the consumption of processed foods, fast food and diets low in fruits and vegetables.

Why are children more susceptible to IBD?

As rates are increasing in children, experts like Kaplan and Radke still aren’t exactly sure why. But there are theories.

“The under-age of six group is a very unique group – they’re the group that has the most likelihood of having a genetic explanation for their disease,” Kaplan explained.

Children have had shorter exposures to environmental risk factors, meaning genetics may play a huge part, he said. These genes may make a child more susceptible to environmental triggers.

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“One of the things that we’ve seen is that children who have been breastfed are less likely to have inflammatory bowel disease,” Kaplan explained. “And we obviously recognize that not every person is able to choose to breastfeed, but it is something that we think of that is important in the development of the microbiome.”

Other factors that may be linked to IBD are a poor diet or the use of antibiotics, which can disrupt the microbiome, he added.

Click to play video: 'Rates of Cohn’s disease and colitis rising among children under 5'
Rates of Cohn’s disease and colitis rising among children under 5

A 2018 study published in the Journal of the Canadian Association of Gastroenterology found the number of children in Canada living with IBD is growing rapidly, increasing 50 per cent in the first decade of the 21st century.

IBD diagnosis rates among children and adolescents in Canada are not only increasing, but the authors of the study also highlighted the distinction between the disease in childhood versus adulthood.

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For example, children have more extensive disease, higher rates of acute severe colitis and are at risk for growth delay, puberty delay and bone development deficits, the study found. The research also shows children with IBD show higher rates of anxiety and depression than other children, and also compared with adults with the disease.

Despite the growing number of children in Canada living with IBD, there are few available medical therapies approved by Health Canada due to the omission of kids from most clinical trials, the report stated. As a result, off-label use of medications is common, and physicians have learned to use existing therapies for adults more effectively.

What needs to be done?

As the number of Canadians living with IBD increases, there is also a rise in health-care costs, the Crohn’s and Colitis Canada report stated.

For example, the report estimated that costs associated with this disease (such as surgery, treatment and hospitalization) increased from about $2.57 billion in 2018 to about $5.38 billion in 2023 — and will continue to rise.

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“The goal of the report is to essentially improve the quality of life of people living with IBD while preparing our health-care system for the rising burden of IBD in Canada,” Kaplan said.

“We’re not treating gastroenterologists in the same proportion that we’re seeing the rise of IBD in provinces. And that’s going to put tremendous stress on our health-care systems.”

The report recommends not only training more gastroenterologists for the increasing demand but also offering more virtual care, especially for those living in rural communities.

Click to play video: 'Queen’s University researchers are helping lead the charge in fighting IBD and IBS'
Queen’s University researchers are helping lead the charge in fighting IBD and IBS

“And that’s both a benefit to patients and their caregivers, for example, parents who are trying to get their kids to see specialists in pediatric hospitals, which are essentially only in big cities,” Kaplan said.

Because one of the challenges for people living with IBD is mental health, Radke stressed the importance of offering a “holistic approach” to patient care.

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She said it’s important not only to have access to quality doctors but also to mental health professionals and dieticians in clinics.

“Everybody’s disease is unique, Crohn’s is different from colitis,” Radke said. “So to have a dietitian in a clinic (makes) referrals available so that people can actually customize what’s going to work best for them.”

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