In his own words: living with irritable bowel syndrome
Jeffrey, 40, developed irritable bowel syndrome (IBS) while still a teenager. Not only has he learned to manage the disease so that he can continue to live a full and active life, Jeffrey also founded and runs a support group for other IBS sufferers. Here's his story.
What was your first sign that something was wrong? What symptoms did you experience?
Severe pain associated with bowel movements. It was uncontrollable, like someone taking a knife and dragging it across my abdomen.
What was the diagnosis experience like?
I was only 15 when my symptoms began, so my mother took me to doctor after doctor. In those days doctors called it spastic colon or nervous stomach, and I felt like it was all in my head, that I was responsible for causing my pain.
I had thorough upper and lower gastrointestinal workups, scans of the large and small intestine. They tested me for celiac disease, Crohn's disease, irritable bowel disease, even lactose intolerance. I had blood tests, had a sigmoidoscopy, and eventually had a colonoscopy.
What was your initial and then longer-term reaction to the diagnosis?
I had a teenager's concerns about my body, wondering whether everything was normal, so this was especially hard to deal with. It was a real turning point when I realized there was a light at the end of the tunnel, that the symptoms come and go and I wouldn't always feel so badly. I have more perspective now, and can appreciate that I'll go through good times and bad times.
How do you manage irritable bowel syndrome?
There's no cure, and everyone has to find the treatment that works for them, though there are helpful medications. I take antispasmodic medication for the pain, I'm careful about what I eat, and I've found breathing exercises (which I learned to help me get over a fear of flying) to be incredibly helpful in coping with IBS flare-ups. The pain is worse, or at least feels more intense, when you're tense and nervous; the breathing exercises help me to feel calmer and more in control.
Did you have to make any lifestyle or dietary changes in response to irritable bowel syndrome?
No direct correlation has been found between diet and irritable bowel syndrome, and each patient has to find what works for them. I find it helpful to keep my bowel full. For people suffering from constipation with their IBS, this might contribute to the problem, but in my case adding roughage and fiber helps me. I used to stop eating and go on liquids when having a flare-up, but I've learned that for me, adding 100% whole wheat bread to my diet and eating vegetables like broccoli help. I also know, though, what works one day or one week may not work at another time.
Did you seek any type of emotional support?
My family has been terrific—my wife and I met as teenagers and she knew what she was getting into. I also have a really supportive employer—this can be a difficult and embarrassing disease to manage if your employer isn't understanding about times when I may have to leave my desk or even a meeting to go to the bathroom immediately. And having a good relationship with your doctor, finding one who will really listen to you, is key—mine is wonderful.
Does irritable bowel syndrome have any impact on your family?
Yeah, it really does. They may have to wait for me to go to the bathroom one more time if we're heading off on an outing, or understand that I may need to lie down before we can go, or that I may not be able to go at all. I know what my limitations are and so do my wife and kids.
What advice would you give to anyone living with irritable bowel syndrome?
Know that you are not alone! Connect with other IBS sufferers either in person or on the Internet. It helps to know that you're not the only one who can't always go out just when you need to or want to, or who can't eat a certain food that you enjoy. Having your illness validated in this way—knowing that it's not in your head, that other people understand—is terribly important.