What is irritable bowel syndrome? A gastroenterologist tells us there’s no reason to be embarrassed about IBS

Irritable bowel syndrome sounds like a catch-all term for “trouble pooping.” And while the condition does involve a range of gastrointestinal issues, IBS symptoms are much broader and can include mental health issues as well. To better understand irritable bowel syndrome, a condition that affects an estimated 12% of people in the U.S. (and women especially—we’re two times more likely to have it than men), HG talked with a doctor who answered all our questions about this disorder. While talking about toilet time can be pretty uncomfortable, it’s an unavoidable reality for people with IBS—so let the convo flow.

According to the National Institutes of Health, IBS is usually defined by repeated pain in your abdomen and changes in your bowel movements—whether that’s diarrhea, constipation, or both. None of these conditions are pleasant to live with, especially since gas, bloating, indigestion, and acid reflux can be associated with them, too. And it’s embarrassing to articulate the discomfort you’re feeling…or your need to sit on a toilet until the motion sensor lights in the public bathroom go off (yes, that really happened to this IBS-suffering writer). It can leave you feeling anxious about doing regular activities, like going to work, going out to eat, using the bathroom at a significant other’s house, or attending holiday festivities.

But ultimately, there should be no shame in talking about this common disorder that impacts millions of people.

One person who agrees with that sentiment is Dr. Caterina Oneto, a gastroenterologist and clinical assistant professor within the NYU Division of Gastroenterology. She told HG that people shouldn’t be embarrassed to talk about irritable bowel syndrome, and to help clear up some misconceptions, she answered every question we had about IBS.

What is irritable bowel syndrome?

“Irritable bowel syndrome is a functional disorder of the gastrointestinal tract. It’s characterized by a combination of abdominal pain and an abnormal bowel habit. It’s a very common condition: about 10-15% of the U.S. population is affected by it.”

What are the symptoms of IBS?

“The two defining symptoms are abdominal pain and an abnormal bowel habit. But sometimes patients have other symptoms, like sudden urgency to have a bowel movement and abdominal bloating.”

What are the different types of IBS?

“IBS is classified according to the predominant bowel habit. There are four different subtypes of IBS: There is IBS with predominant diarrhea (IBS-D), where patients report that more than 25% of their bowel movements are mushy or liquid and less than 25% are hard and lumpy; there is IBS with predominant constipation (IBS-C), where over 25% of bowel movements are hard or lumpy, and fewer than 25% are mushy or liquid. Then there is IBS with mixed bowel habit (IBS-M), where over 25% of bowel movements are mushy or liquid and also over 25% of bowel movements are hard or lumpy. And lastly there are patients who meet criteria to be diagnosed with IBS but their bowel habit cannot be accurately categorized in any of the above subtypes. That fourth subtype is called ‘unclassified’ or IBS-U.”

Is one type of IBS more common than others?

“They are of similar prevalence, but most patients have a fairly irregular bowel habit.”

What causes IBS?

“IBS is thought to be multifactorial. In other words, there doesn’t seem to be one single cause. Factors include dysbiosis (an imbalance of the intestinal microbes), an alteration of the intestinal barrier function, motility abnormalities (altered movement of the intestines), and visceral hypersensitivity (when the perception of internal organs is exacerbated).”

What are some indicators that I should see a doctor about IBS?

“Well, one important reason to see a doctor if you think you have IBS is to confirm that IBS is actually the correct diagnosis. After the diagnosis is made, it’s important to determine which symptoms are bothering you the most in order to pick the best treatment for you. Interestingly, IBS is a heterogeneous disease and different patients respond to different treatments.”

How is someone diagnosed with IBS? What tests can help diagnose you?

“In many patients, the history and physical exam are sufficient to make a diagnosis. Depending on the case, blood and stool testing may be necessary to rule out other conditions, such as infections like parasites, malabsorption, and chronic inflammation. And sometimes an endoscopic evaluation and/or imaging are indicated to rule out other conditions. A thorough evaluation is particularly important in patients who have what are called ‘alarm signs and symptoms,’ like weight loss, rectal bleeding, nocturnal symptoms (patients with IBS generally have symptoms only during the day), anemia, onset of symptoms after the age of 50, or a family history of gastrointestinal cancer, inflammatory bowel disease, or celiac disease.”

Is it common for a person with IBS to experience other health issues?

“Sure. Conditions like fibromyalgia, chronic fatigue syndrome, depression, and anxiety can be associated with IBS. Many patients with IBD (inflammatory bowel disease) also have IBS, making the management of their symptoms more challenging. In my experience, some patients with IBS often have extraintestinal symptoms like fatigue, brain fog, anxiety, and depression.”

How can IBS impact a person’s day-to-day life?

“In many ways: The abdominal pain, discomfort, and bloating that patients with IBS often experience can certainly affect their quality of life. Also, particularly in the case of IBS-D, patients find that their social and professional life can be negatively impacted since they don’t know when they will have to use the restroom. That’s why urgency and even very occasional episodes of incontinence or ‘near accidents’ can be traumatizing and make patients shy away from normal daily activities.”

What causes IBS? Is it genetic/does it commonly run in families?

“The cause of IBS isn’t well understood, but it’s considered a multifactorial condition. And yes, there may be a genetic component at least in a subset of patients.”

Is there a way to prevent IBS?

“As mentioned before, the pathogenesis of IBS is not completely understood. But there seems to be a subgroup of patients, particularly of those with IBS-D, where an episode of infectious gastroenteritis acts as a trigger for IBS. We call that subgroup ‘post-infectious IBS.’ So in those patients, avoiding or possibly treating the infection early may be a way of preventing IBS.”

What are some common treatments?

“There are many treatments we use when managing patients with IBS. Some are simply lifestyle modifications, focusing especially on diet and on the patient’s daily routine. Some are pharmacologic. When choosing a medication for a patient with IBS, it’s important to assess which symptoms bother the patient most. Is it the consistency of their bowel movements? Is it their frequency or their unpredictability? Does the patient have urgency, cramps, bloating? The treatment should be tailored to the patient’s symptoms and circumstances.”

Are there certain foods that people with IBS are generally advised to avoid? How about foods that people with IBS should include in their diets?

“Every patient is different. But for many patients with IBS—particularly IBS-D—large, fatty meals can worsen symptoms. Caffeine, sugar, and alcohol are also frequent triggers.

The main diet we use nowadays for IBS is the low FODMAPs diet. The term FODMAP is an acronym, derived from Fermentable Oligosaccharides, Disaccharides, Monosaccharides, and Polyols. They are short-chain carbohydrates that are poorly absorbed in the small intestine. Reducing the intake of these carbohydrates improves IBS symptoms in many patients. But the low FODMAPs diet is not meant to be a long-term diet. The idea is to use it for a limited number of weeks and to later gradually reincorporate foods as tolerated.”

Can keeping a food journal help?

“In my experience, they are most helpful in patients who only have intermittent symptoms. In those cases, one can sometimes connect the dots and realize that there is a specific food intolerance, for example. I find them less helpful for patients who are symptomatic every single day.”

Will I have to eliminate foods to figure out what triggers my IBS? How do I deal with giving up foods that I like?

“After getting a good history from the patients, sometimes it becomes clear which foods are triggering symptoms. In those cases, I simply ask the patient to stop or limit the intake of those foods and to keep a diary of their symptoms. Unfortunately, in most cases, this isn’t as clear and an initial period of a restricted diet is needed to better understand which foods are playing a role.

The low FODMAPs diet is commonly used during the initial ‘restricted diet’ phase, but it’s important to transition to a ‘food challenges’ phase with the help of a dietitian. The idea is to use the diet as a tool to identify the foods that are triggering symptoms. In other words, each individual will likely need only a few of the many restrictions that are recommended in the low FODMAPs diet.”

How damaging is it to eat something that triggers my IBS?

“Generally speaking, the effect of eating one of the foods thought to be a trigger only has a short duration, not longer than a few days.”

Will I always live with IBS?

“We do consider IBS a chronic condition, so in that sense, the answer is yes. But we have many tools to treat it and the vast majority of our IBS patients can have a great quality of life with few if any dietary restrictions.”

What are some misconceptions about IBS?

“Probably the worst misconception is that ‘IBS doesn’t exist.’ Another common misconception the idea that IBS is ‘just a psychological problem.’ As you can imagine, these ideas only add to the frustration of patients who are already suffering from IBS symptoms.

Another one is that there is one single treatment—a particular diet, a probiotic, or a medication—that works for everybody. As mentioned previously, the treatment has to be tailored to each individual patient.”

I’m ashamed to talk about the fact that I have IBS. Is there any reason to feel embarrassed? How do you recommend managing it?

“Don’t be embarrassed! In my office, patients often say things like, ‘Maybe this is TMI,’ etc. I tell them, ‘Look, this is all I talk about!’ We need that information in order to best help you.

Take notes regarding your symptoms and bring them to your office visit. You can read them out loud or you can ask the doctor to read them. Or take pictures of your bowel movements. A lot of times it’s easier to just show a picture than to describe your bowel movements and you don’t want to be guessing if what you saw is mucus or blood, etc.”

Are there any other questions/topics that you have encountered in your work that would be good for people struggling with IBS to know?

“An issue that comes up is that occasionally patients adopt restrictive diets prior to seeing a doctor. A gluten-free diet, for example, is necessary for patients with celiac disease and may help patients with gluten intolerance. But before going on a gluten-free diet, it’s best to consult your doctor. In patients who are already on a gluten-free diet, it becomes very difficult to diagnose celiac disease since exposure to gluten is necessary for blood tests that detect celiac disease to be accurate.

Another issue that comes up often is that in the internet era there is a lot of information out there: some good, some not very good. Ask your doctor about sites that offer accurate information and advice.”

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