NDDIC News
Living With and Managing Fecal Incontinence
By Nancy J. Norton, Founder and Director,
International Foundation for Functional
Gastrointestinal Disorders
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 1–888–964–2001 or by writing to P.O. Box 170864, Milwaukee, WI
53217.
NIH Publication No. 00–4552
February 2000
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