When You Gotta Go: Living with IBS

I hate my guts. Literally. They have betrayed me for the past 20 years, giving me severe abdominal pain as well as unrelenting bouts of constipation or diarrhea. I have a condition known as irritable bowel syndrome, which if you ask me is a misnomer. The name makes it sound like a minor inconvenience rather than the awful, painful illness that it is. I think it should be called Dear-God-Just-Shoot-Me-Now Bowel Syndrome.

My IBS began after a near-apocalyptic episode of food poisoning when I was 12. Twenty-four hours of vomiting and diarrhea followed a violent vomiting attack in the small hours of the morning, and my guts were never the same after that. I didn't know what it was then, but my early years with the disease were relatively easy. I often went two or three days without a bowel movement, which led to abdominal pain and bloating, but it was a sporadic complaint that never ruled my life.

That all changed at age 22, when my bowel suddenly turned into a massive drama queen. My boring, uncomfortable routine of constipation and pain was joined by sudden attacks of diarrhea that would begin with 10 minutes of intestinal gurgling and cramping and end with a trip to the toilet four or five times in an hour. The stabbing, sharp pains in my side would only subside when my bowels were completely empty. I would struggle with constipation for two or three weeks and then experience an intense bout of diarrhea for no apparent reason. These attacks could strike at any time, giving me very little warning. One memorable day I woke up, got dressed, had breakfast, and pooped my pants in the living room. Then I cleaned myself up and went to my job as a proofreader. I stuck it out all day long at work, even though my guts felt like they were trying to kill me.

I rarely had a day without pain. I hadn't changed my diet or lifestyle, so I had no idea what the problem was or how to fix it. On a bleak Sunday night four months later, I collapsed in a sobbing heap and called my dad. He brought me back to my childhood home in Hampshire, England, and arranged for me to see a gastroenterologist. The doctor performed a sigmoidoscopy (where a tiny camera is inserted to see part of the colon) to rule out tumors, then did an ultrasound because he wanted to "reassure" me that I "just" had IBS. When he said I did indeed just have IBS, and advised me to take laxatives, I sat in his office and cried. The clueless doctor thought I was shedding tears of relief that I didn't have cancer. But by that point I had done enough research to suspect IBS and I was scared about having a condition that didn't have a cure and didn't seem to be taken very seriously. For one thing, I knew that some doctors still clung to the view that IBS is a psychological problem; this guy seemed to believe mine would go away if I would only calm down a bit. Plus I'd been to doctors before and the advice was always the same: Take laxatives. The thinking was that if I used laxatives and never got constipated, my body wouldn't need to have diarrhea attacks.

At this point I had gotten so little support from medical professionals that I felt very alone. So I turned to the Internet. I quickly found some useful sites but not many that talked about how it actually felt to live with IBS. I decided to set up my own website to find stories from others who'd been through it. When people started sharing their experiences, I was astounded to realize that I was not a weak and feeble person who couldn't cope with a tiny problem like IBS. In fact, I was part of a huge group of women who were as sick, tired, and bewildered as I was. This was a revelation.

And for every woman who e-mailed me with a story of pain and suffering, there was another who said that she had found real relief. This motivated me to start looking for my own cure, and I began testing all kinds of treatments. After a lot of trial and error, I discovered that taking a daily soluble fiber supplement really helped and that magnesium citrate tablets controlled most of the constipation. I then discovered that a gluten-free diet reduced my symptoms even further.

While my IBS isn't cured, I definitely feel much better than I used to. I've gone from being a sick person who occasionally has a good day to a well person who is a bit prone to gut problems. And although my life is still a little restricted, it is happy. I can work, I can socialize, I can cook, I can laugh, I can live. I don't quite love my guts yet, but I'm getting there.

Sophie Lee is the author of Sophie's Story: My 20-Year Battle with Irritable Bowel Syndrome and the founder of the website IBS Tales.