Hundreds of millions of people suffer from irritable bowel syndrome, young people in particular. But we don’t like to talk about it.
A woman suffers from stomach cramps. (Photo illustration by News Decoder)
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When Annick Bissainthe was diagnosed with irritable bowel syndrome (IBS) in 2018 it destroyed her relationship with food and that affected her relationship with people.
She said it restricted social interactions and prevented her from doing activities she used to do before her diagnosis. “Like two days before, I would agree that, yes, I’m going to meet you at a certain point,” Bissainthe said. “But something happens one hour before that [gets me] sick and I can’t go anymore.”
IBS is a common condition afflicting 5-10% of the world’s population but its symptoms are things few people want to talk about: abdominal pain, cramping, diarrhea, constipation, bloating and excessive gas.
Preventing these symptoms often requires adjustments to a diet. It is easy to explain to someone why you can’t eat certain foods if you are allergic to those foods. But many people find it embarrassing to explain that they can’t eat those foods because of an irritable bowel.
Dairy, added sugars and spices are among Bissainthe’s top triggers for IBS symptoms, but they comprised a large part of her diet prior to being diagnosed.
“Everyone else in your culture eats it,” said Bissainthe. “Food is not just about eating, but there’s also a sociocultural aspect … it’s difficult especially being in an environment where you’re not understood.”
Symptoms of IBS go untreated.
IBS is particularly prevalent among young adults but often undiagnosed. Living with IBS as a young person can be especially difficult. “I was in my late 20s, so I was like, ‘I’m a healthy young adult but not able to eat [certain foods]’,” Bissainthe said. “I felt like my body was letting me down.”
Dr. Miranda van Tilburg, professor of Health Systems Science at Methodist University in the U.S. state of North Carolina, said that IBS has no known physical cause, so it is often poorly managed, treatment efficacies vary widely and patients’ concerns are frequently dismissed.
“There are no tests that we can do, biomedical markers, no radiography, nothing we can do to look at your body and say, ‘You have IBS,’” van Tilburg said.
Dr. Irma Kuliavienė, a gastroenterologist at the Lithuanian University of Health Sciences, said that while the symptoms are real and have biological underpinnings, unlike a tumor, they can’t be “seen” such through endoscopy or colonoscopy scans.
Jeffrey Roberts, an IBS patient advocate, said that he often wondered whether he was the cause of his symptoms and if it would restrict what he could do in life. He said the diagnosis of IBS is often dismissed as “just IBS” or brushed off as “all in the head.”
In the media, when bowel problems are raised, it is often to produce laughs, he said.
No laughing matter
Treating IBS as a joke can be detrimental to IBS patients’ mental health and quality of care. Van Tilburg said IBS can be the primary source of stress in someone’s life but telling people to reduce stress when they have these symptoms is counterproductive.
The reasons why IBS occurs are unclear, although several possible contributing factors have been proposed. They include the interaction between the gut and the brain, known as the gut-brain axis, and the gut microbiome — the ecosystem of microorganisms in your gut.
Because many potential biological mechanisms could be at play, it is difficult to identify a common therapy that will work for everyone, Kuliavienė said.
Dr. Shefaly Shorey, associate professor at the National University of Singapore, said that talking about gastrointestinal symptoms such as flatulence, diarrhea and constipation is considered taboo, especially in many Asian cultures. Shorey was diagnosed with IBS in 2017 and said this avoidance of open conversations about bowel problems can hinder needed care.
“These are not glamorous topics to talk about,” Shorey said. Lack of support and acceptance, especially from family members, can lead IBS patients to avoid opening up about their symptoms.
Finding the right treatment
In some countries, dieticians and access to lab tests are not widely available and that can also affect whether someone can get properly diagnosed. Van Tilburg said that a key first step to helping people who have IBS is for doctors and nurses to accept symptoms as genuine. “We need to do a better job of educating physicians on how to talk to these patients,” she said.
This is important because IBS is a chronic condition that many patients will deal with for life, and while there are different therapies that can help reduce or eliminate symptoms, there is no one-size-fits-all treatment.
Extensive trial-and-error is often needed to find what approaches will work best for each individual, a process that requires close collaboration between the patient and practitioner. Bissainthe still lives with IBS but having tried so many different treatment options over the years, is better aware of what management strategies work for her.
Kuliavienė said that to find the right treatment there needs to be a trusting relationship between doctor and patient.
“When we talk with our patients, when we hear our patients, we can see which pathway is better and choose specific treatments for specific patients,” she said.
Questions to consider:
1. What is irritable bowel syndrome?
2. Why are people embarrassed to talk about IBS?
3. What things are you embassed to talk about with a doctor?
Jasmine Ryu Won Kang is an MD/PhD student at the Temerty Faculty of Medicine at the University of Toronto.