'IBS is an embarrassing condition that needs to be talked about more'

The stigma around irritable bowel syndrome often prevents patients from seeking medical help.

Maja Begovic 7 minute read April 22, 2022
ibs abdominal pain

IBS affects the large intestine, and it often leads to chronic symptoms, such as abdominal pain, gas and bloating. GETTY

For years, Robyn Barefoot was too embarrassed to talk about the symptoms. She couldn’t shake off the abdominal pain, bloating and constipation that began in university and stubbornly persisted well after graduation. At first, she was reluctant to seek help, but eventually, when she brought it up during an annual physical exam, her doctor — short of suggesting that it was all in her head — pointed out that Barefoot’s symptoms were “not new “and further tests were unnecessary.

“The whole diagnosis process can be very frustrating, especially not having the answers or the support you need,” says Barefoot. “IBS is a very embarrassing condition that needs to be talked about more.”

Barefoot took matters into her own hands, delved into research, and learned that what she was experiencing were textbook symptoms of irritable bowel syndrome or IBS as it’s often referred to. As a registered dietitian, Barefoot is well-equipped to identify problematic foods and steer clear of the well-known triggers that make IBS worse. White bread, processed foods, a high-protein diet, too much dairy, coffee or alcohol could lead to a flareup and make IBS-related constipation worse.

Managing IBS requires a lot of planning

“What’s most challenging about IBS is managing the condition, finding something that works and staying consistent with that approach,” says Barefoot. “It involves a lot of planning, and for me, that means remembering to take a probiotic, to eat oatmeal or bran cereal for breakfast every day, and for any trips away, remembering to pack a fibre supplement, and drink lots of water.”

IBS affects the large intestine, and it often leads to chronic symptoms, such as abdominal pain, gas and bloating that is accompanied by constipation or diarrhea. There is no cure for it and the severity can vary, however, most people can effectively manage IBS with proper diet and lifestyle modifications, but some may suffer debilitating symptoms that prevent them from working.

The Canadian Psychological Association estimates that IBS affects up to one in five Canadians — in fact, this country has the highest prevalence of IBS than anywhere else in the world. There is no screening tool for it, but Rome IV diagnostic criteria is used to formally diagnose patients who suffer from recurrent symptoms — vomiting, bloody stool or rapid weight loss may be signs of a serious disease and require further investigation. Studies reveal that IBS impacts more women than men, and usually those under the age 50, but there is also evidence that suggests that it might have genetic underpinnings. Having anxiety or a mental health illness may also increase someone’s odds of developing IBS.

IBS has a clear brain-gut connection

Dr. Christian Turbide, gastroenterologist, and clinical assistant professor of medicine at the University of Calgary says that when it comes to IBS, there is a clear brain-gut connection.

“The brain-gut access cannot be separated,” he says. “You can’t separate the brain from the gut just like you can’t separate the brain from the heart.”

The way this works is that in those with IBS, when the brain sends signals to the gut, the wires get crossed and as some studies suggest, this disruption affects the gut’s normal functioning and causes an imbalance of its bacteria. People living with IBS appear to have higher bacterial counts in the small intestine, and they are also more likely to have an abnormal breath test for small intestine bacterial overgrowth or SIBO — a condition that also affects the gut and shares some of the same symptoms as IBS.

Turbide says that in addition to the well-known risk factors for IBS, research has shown that some people who have previously been infected with E.coli bacteria may develop what is clinically referred to as post-infectious IBS or PI-IBS. Take the Walkerton tainted water disaster that killed seven people in Ontario, for example. Of the 2,300 who fell ill, 36 per cent ended up developing post-infectious IBS. While exposure to E.coli might have been the environmental trigger, a genetic component may have also played a role, suggest researchers.

Walkerton crisis revealed link between food-borne illness and IBS

The Walkerton crisis led to a new understanding about the manifestation of post-infectious IBS, but there’s another food-borne illness that can set off a series of reactions in the gut.

“If someone who is traveling abroad is infected with salmonella, their gut motility and stomach acid might be off, and that may put them at an increased risk for IBS,” explains Turbide.

Dr. Colleen Parker, gastroenterologist, and clinical associate in the division of Gastroenterology and Hepatology in the University Health Network says that treatment for IBS requires a combination approach. For some patients, this means focusing on reducing the frequency and severity of symptoms, while for others, stress management techniques and dietary modifications may be required. Medications can also be used to help relieve abdominal pain and help address concerns around bowel habits.

Currently, there is no cure for IBS, but Parker says that research is advancing and that better understanding of the role of the microbe in IBS could lead to targeted therapies.

“There is a lot of work being done on the underlying mechanisms or the physiologic changes that contribute to the development of IBS symptoms,” she says. “Once we better understand these mechanisms, new treatments are going to follow.”

IBS stigma is still pervasive

This is good news, but Kelsey Cheyne, executive director of the Canadian Digestive Health Foundation, says the stigma around IBS is still pervasive and may prevent some people from accessing the available treatment options or getting the support they need. People are often being told that the symptoms they’re experiencing aren’t real, she says, or that it’s all in their head when in fact, this couldn’t be further from the truth.

“Due to its unpredictable and persistent nature, IBS places a significant burden on everyday life, and individuals often suffer psychologically because of this,” explains Cheyne. “By ending stigma, more people can find solutions and manage their symptoms sooner.”

The Canadian Digestive Health Foundation is focused on spreading awareness to help end the stigma, but beyond that, one of its mandates is to arm people who live with IBS with the tools they need to help improve communication about symptoms and maintain a positive patient-physician relationship. Cheyne says that the organization’s myIBS app, which has been developed in collaboration with leading gastroenterologists and primary care physicians, can help to accelerate patient knowledge and deepen positive communication with healthcare practitioners. The app also allows patients to track their symptoms daily and provides them with access to research and information about IBS and digestive health.

Barefoot who is 28 years old says that people who are too embarrassed to talk about their symptoms may suffer in silence. IBS-related constipation may not seem like something that could have a wide-reaching impact on someone’s health, but she warns that it could lead to serious complications, including a bowel obstruction and a potentially life-threatening infection.

She also says that patients who aren’t taken seriously by a health-care provider may lose trust and feel alone in their experience. In fact, she confesses that she’s more inclined to visit a walk-in clinic than seek support from the physician who was dismissive of her symptoms and failed to address her concerns.

“Be your own advocate,” she urges others who are going through a similar experience. “It’s so important.”

For information on irritable bowel syndrome and to connect with others, check out the Canadian Digestive Health Foundation, the GI Society and IBS Patient Support.

Maja Begovic is a Toronto-based writer.

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