What It's Like to Have Irritable Bowel Syndrome

The disorder is as mysterious as it is smelly.

Two women sitting side by side in toilet stalls with their feet visible below the door
David Leahy / Getty

I wake up one morning certain that I’ve become three months pregnant overnight. The farting starts immediately. I skip breakfast, spend a half hour searching for pants I can zip over my bloated stomach, and then hurry to work and sit at my desk by the door of a tiny office crammed with four editors. My belly doesn’t rumble, but buzzes and shrieks. I shift in my chair to hide the cacophony.

Four hours pass. I take trips to the bathroom to stand in the stall and let it all out. My boss calls me into her office and I rise, suck it in, and waddle to her. Yes, of course I’ll look at the brochure. Lunch time arrives. I cautiously eat some bread and peanut butter, then smell something rankish and panic. Did I just leak gas without knowing? No, someone is heating a cheesy burrito in the microwave.

Exhausted at the end of the day, I flatulate my way back home. I eat my first real meal of the day and continue to pass wind every 10 minutes, like clockwork, until bedtime. The funk makes it hard to sleep. The next morning, I rush to the bathroom, decide to risk breakfast, then stop at the door on my way out to run back for round two. I arrive 10 minutes late to work, tired already, and endure the same routine for two weeks before my bowels settle down and declare defeat.

The cause of my plight is irritable bowel syndrome (IBS)—a disorder where the brain and the gut don’t communicate as they should. It’s a functional disorder, which means that it comes from a problem with the way a normal body function is carried out, instead of something foreign, like a virus. And unlike other illnesses that don’t involve foreign assassins—cancer, for example—IBS will not show up on any tests or examinations.

IBS’s issue is abnormal colon motility—the contraction of muscles in the intestines and the way food moves through them—where the colon is extra sensitive and tends to spasm when stimulated by things like food or stress. These spasms can cause food to move too quickly through the digestive tract (diarrhea) or get stuck (constipation). People with IBS can also be extra-sensitive to the goings-on in their gut, and feel pain from small pockets of gas, for instance, when others would feel nothing.

The disorder is common, affecting 10 to 15 percent of adults, and twice as many women as men. Since the cause of the disorder is unknown, treatments are often aimed at the symptoms: laxatives, stool hardeners, changes in diet, supplements, and even psychotherapy. Psychotherapy often addresses stress management, but also deals with the emotional side effects of having a persistent, incurable, mostly invisible, and dinner-conversation-taboo disorder.

I learned that I had IBS as a sophomore in college, a few weeks before winter finals. The first step in treating it, I was told, was to keep a food log: For a few months, I had to write down everything I ate, every day, and how I felt afterward. I also had to reduce stress. I lasted about three days before giving up the log—who has time for that?—and reducing stress as a college student with looming finals was not an option. Besides, I wasn’t convinced that IBS was what I really had; maybe the doctor had missed something, maybe it was a passing bug.

I finished college with on-off symptoms, making visits to doctors whenever I felt particularly bad, certain that this time we’d catch something terrible lurking in my bowels. I even scooped my poop into vials and sent them to a laboratory to look for bugs. At one point, I had a bout of panic attacks as I cycled through all the things I could have: endometriosis, colon cancer, a gut-bursting alien.

As a student I’d had enough breaks in the day to hide in my room and recuperate, but after graduating it became much more difficult. In addition to struggling at work, I made excuses not to meet friends; often, I was just too tired to spend a night ballooning with gas or fretting over the geometry and mechanics of airflow between a bathroom and living room. I dreaded dates with a new significant other. What if I fart on him while he’s the big spoon? I’d reject being physical with excuses like headaches or fatigue.

Some researchers believe that the issue in IBS lies in the brain-gut connection, a mysterious link whereby the goings-on in a person’s gut are believed to influence not only mood, but some of the core facets of personality. The connection is why people feel nauseated, for example, before giving an important speech. The brain sends signals to the gut, such as, what if I mess up, and all my great auntie’s prophecies of failure and depravity come true? To which the gut responds with butterflies or violent, vomitous stage fright. Or instead, the gut might signal food poisoning! to the brain, to which the brain responds with, that hurts, and, quick find a bathroom!

Scientists have suspected this connection as far back as 1902, when a study showed that food moved differently through cats’ digestive tracts when dogs were growling at them. In 1921, the physician John Newport Langley laid the foundation for our understanding of the enteric nervous system (ENS), a collection of neurons—some 100 million—that spans from the esophagus to the rectum and sends signals, like those butterflies, to the brain. But it wasn’t until later, in 1996, when Michael Gershon, a pioneer in the field of neurogastroenterology at Columbia University, dubbed the ENS as the human body’s “second brain” that the extent, and eeriness, of the connection took hold.

The ENS is thought to use some of the same neurotransmitters, like serotonin, as the big brain in our heads. Researchers have long believed that imbalances in serotonin in the brain influence mood and cause depression, and the same can be said for the gut. The gut produces serotonin as well, and an imbalance there could be considered a kind of depression of the second brain. But the result isn’t a gut that feels sad—instead, it’s a person who could develop severe, and lifelong, depression.

One emerging theory for IBS is that there is, in fact, an imbalance of serotonin in the gut: Those with diarrhea have too much, those with constipation have too little, and both run the risk of serotonin-induced mood swings.

At a particularly low point, I Googled “IBS symptoms” and discovered some forums dedicated to IBS sufferers and others with gastrointestinal disorders. On one, an anonymous person wrote: “It seems that my whole life is dominated by my bowel to the extent that some days I am afraid to leave the house.” Another person lamented the disorder’s invisibility: “This disease does not 'show' on the outside, so even good friends are not always understanding. I am aware of this so I keep it to myself.” IBS is not a life-threatening disorder, but some people become incapacitated by it. They quit work, stop traveling, and withdraw completely. Some fall into a deep depression that exacerbates the brain-gut feedback loop and intensifies their symptoms.

Like me, many people with IBS are too embarrassed to talk openly about it, or think that because it’s invisible or not serious that somehow their symptoms don’t matter. They also try to shove their lives into a neat little box in hopes of keeping their disorder from bothering anybody else.

After reading the forums, I lingered for a few months as a dismal shut-in. The exact moment when I began to wade out of the quagmire is difficult to pinpoint, but it occurred sometime between buying black stretchy pants that were suitable for work and sitting down to write this story. Seeing all of my struggles and worries written down on the page, I saw that I seemed to have pushed my own care off to the side.

What if I was bloated in the morning? What if I farted in the office? Would I get fired? Who would care?

Eventually my significant other and I came to a few agreements. He got to use the bathroom first and I second. If I could pass wind willy-nilly, then so could he. He also understood that I was not being picky when vetoing burritos for dinner, or that when I said not today for intimate time, that it was really in both of our best interests.

When I first told him about my IBS, I said I was afraid he would judge or dump me for being gross and “un-ladylike.” His reply was something along the lines of: what kind of a person do you think I am? It was a good question; what kind of a person judges character by the state of one’s intestines anyway?

When I was little, my mother once told me that there is a second brain in everyone’s pinky toe. I had a lot of questions: right or left? What’s it thinking about? Doesn’t it get bounced around too much from all that walking and running and boots-in-a-puddle jumping? Of course it’s not true, but it was an early lesson that the human body could be full of things just as odd. Now, the next time I feel sad or anxious, I plan to just blame it on someone else’s cooking.