By Nancy J. Norton, Former President and Founder, International Foundation for Functional Gastrointestinal Disorders (IFFGD)
If you think fecal incontinence is a problem of old age, you are partly right. Although it does affect the elderly, people of all ages live with fecal incontinence. In fact, many older people have been trying to cope with the problem for years before they are diagnosed. Unfortunately, most people find it extremely difficult to talk about fecal incontinence – even to a doctor – so they do not know that it is often treatable and that there is much a person can do to make living with it a little easier.
Summoning the courage to admit to incontinence is the first step in managing it. Given the feelings of shame, embarrassment, isolation, and depression that many people experience, this is a difficult task. To make matters worse, after finally saying, “I can’t control my bowel movements” out loud, too many people are met with disinterest, disgust, or a lack of understanding and sympathy—responses that only heighten feelings of hopelessness or isolation. One of the most important things a doctor or caregiver can do for a person who has fecal incontinence is to acknowledge the problem with sympathy and support.
It is also important to help the person deal with the emotional, social, and quality-of-life issues that accompany the problem. Too often, treatment focuses solely on containing fecal matter – an important concern, of course, but not the only one. Fear, embarrassment, anger, isolation, humiliation, and loneliness are equally important issues. These feelings often stem from the fear of having an incontinent episode in public, something that may be unavoidable at times. Knowing what to do when it does happen can help prevent fear from consuming a person’s life and stifling the ability and desire to go out in public, to go to work, or to have intimate relationships. For example, it helps to always have cleanup supplies and extra clothes on hand, and although difficult to accept, protective undergarments may be a good idea. Also, people with incontinence should locate the restrooms in public places and make sure that they can get to them easily. Flexibility is important, too, since plans may need to be changed at the last minute. If someone does not feel comfortable leaving the house on a particular day, he or she should not be forced – the next day may be better.
People with fecal incontinence can benefit greatly from the experience and advice of others who live with the problem. Family members may find such information helpful too, as they learn how to support their loved one. The International Foundation for Functional Gastrointestinal Disorders (IFFGD) has information about existing educational and support programs, as well as tips on how to start one in your area. You can contact IFFGD by calling (414) 964-1799.
NIH Publication No. 00–4552 February 2000