How to Live Life to its Fullest with Fecal Incontinence

By Teri Brown

When Brett, a 34-year-old electrical engineer from Salt Lake City, Utah, was first diagnosed with Crohn’s disease, a form of inflammatory bowel disease (IBD) he was at the end of a long search for answers. He had shown symptoms of the disease as a child, but it didn't start getting bad until he was about 19. By age 22 he was unable to control his bowels, and by the time he was 30, he was physically and emotionally drained.

Crohn’s disease is not to be confused with irritable bowel syndrome (IBS). Crohn’s disease and the related condition, ulcerative colitis, caused damage to Brett's gastrointestinal tract and this, along with constant diarrhea, cause fecal incontinence for Brett and many other IBD patients.

By the time Brett was diagnosed with IBD he had experienced many instances of fecal incontinence.

"Fecal incontinence seems like the end of the world at first," says Brett. "The first time I had a big accident, I was in the middle of a university campus with nothing but my books. My apartment and car was over a mile away, and I was standing in the middle of campus with over half a quart of fluid pouring down my jeans – there was nothing I could do to hide it. It was one of the worst moments of my life."

In the beginning, Brett made a lot of lifestyle changes. He cut way back on his outdoor activities, which wasn't difficult because his overall health was poor. But as his condition improved he found he was still reluctant to resume those activities because of the potential for embarrassing accidents.

When some test results incorrectly suggested that Brett might have terminal cancer, he realized he needed to seize the moment. “I realized how foolish it was to avoid things in life because I was scared of having an accident," says Brett. "From that day on I started living my life again."

Living his life fully meant some planning on Brett's part. He found that he can do most of the outdoor activities that he loves if he just puts enough forethought into his diet and keeps incontinence supplies handy.

"The main things I have to do is plan extra time in case there is a problem and keep careful track of where the restrooms are at all times," says Brett. "It's not perfect ... I can't go swimming anymore, but I can do most things I enjoy. I may have to work a bit harder than everyone else, but that's OK because I seem to enjoy the little things more than I used to."

Planning can be a challenge because the disease "flares" and becomes more active, meaning incontinence can go from light to severe quickly. This means that Brett has to try to guess from day to day how bad things are going to be and prepare for it. He keeps a backpack of supplies and a change of clothes at work and carries a clean-up kit with him when he is out and about.

Brett hopes that in time, people will understand that incontinence is not limited to the bladder, nor is it a condition of age. He has found that there are many people in the medical profession who only expect bowel incontinence in a person who has significant mental or physical disabilities. When they are presented with an intelligent young person who does not fit their mold, they may not be sure how to work through it.

Brett kept looking until he found medical professionals who were willing to search for the answers to his problem. He advises others dealing with similar issues not to give up until they find people who will help them.

"Once I found a doctor and a nurse practitioner who understand the disease and treat all of my symptoms, it made a major improvement in my life," says Brett. "It was worth all the effort I made to find them."

Brett is currently on a round of medication that has made a tremendous improvement in his health and his incontinence. "For the first time in five years, I can sometimes go several days with no incontinence," he says. "Sometimes the medication (which is given every eight weeks) is not enough to control my symptoms, but when it does, it is like a vacation from my illness."

Perhaps someday treatment will be able to completely control Brett's incontinence. Until that time, Brett will continue to live his life as fully as possible.

"Once I started treating my incontinence as a medical problem rather than a personal failure, life became much easier," says Brett. "In 2002, I even learned how to ski. I am now skiing the expert runs at one of the most challenging resorts in the U.S. – even though I do have to wear (absorbent products) under my ski pants!"