THE VIRGINIAN-PILOT
Copyright (c) 1996, Landmark Communications, Inc.
DATE: Thursday, March 28, 1996 TAG: 9603260142
SECTION: NORFOLK COMPASS PAGE: 07 EDITION: FINAL
SOURCE: BY JOAN C. STANUS, STAFF WRITER
LENGTH: Long : 110 lines
For 20 years, Shelby Cahoon put off the inevitable.
Frightened and embarrassed at the prospect of having her colon removed, she suffered with chronic pain, lost alarming amounts of weight and never strayed far from a bathroom rather than undergo surgery.
The idea of living life without normal bowel functions was just too devastating. Instead, Cahoon waited and suffered while her ulcerative colitis gradually got worse.
``I was a prisoner to the bathroom,'' Cahoon, a 54-year-old Chesapeake resident, recalled recently. ``I was uninformed and scared. I thought I'd look like a weirdo ... having to always carry a bag around with me. But finally, when the doctor said I'd be six foot under if I didn't have the surgery within six months, I decided to do it. I wanted to live.''
Now, 16 years after her surgery, Cahoon contends she never has been healthier. And despite her initial misgivings about life after surgery, she's still able to do most everything she did before.
Cahoon's reticence to have an ostomy - a surgical procedure in which an artificial tract is created in the abdominal wall to rid the body of waste - is not uncommon. Many people facing ostomies fear they'll be tied to their homes, unable to eat normal diets and, worst of all, saddled with a waste pouch every time they venture out into public.
Even after surgery, many ostomates keep their personal habits a closely guarded secret from friends and family, afraid they'll be ostracized or embarrassed.
Lonely and scared to death, they become depressed, and, sometimes, suicidal.
``There are a lot of closet ostomates out there who could really use our help,'' noted Pete Lampley, president of the Tidewater Ostomy Association, a nonprofit support group based in Norfolk. ``We figure about a third of (one percent) of the population has had one ... from infants to the elderly. There's thousands of people with them just in Hampton Roads.''
Yet, the group currently has only about 150 registered members. Of those, about 35 regularly attend meetings.
``We're a real untapped resource with some valuable help for these people,'' Lampley said. ``But so many just don't want others to know.''
``People are either ashamed of it, don't want to talk about it, or they keep it hidden,'' explained Janice Nyman, a 20-year member of the organization and head of the group's patient visitation program. ``They don't realize that a lot of us are walking around living full lives and that they'd never be able to tell we've had ostomies.''
After receiving referrals from area enterostomal therapists and nurses, Nyman and other trained members of the association visit patients facing ostomy surgery to give them a realistic picture of their future.
``We try to show them that we're normal and that they will basically be able to do anything they did before,'' explained Nyman, a 48-year-old Portsmouth resident who had a colostomy 20 years ago after suffering with Crohn's disease since childhood. ``They think they won't be able to go on with their lives, and we like to show them they can.''
During her visits, Nyman always urges new ostomates to attend support group meetings as a way to cope with the surgical aftermath.
``We want them to know that the support group is here for them, and if they want to talk, we'll listen,'' she said. ``Basically, we're all in the same boat.''
In addition to serving as a support group, the chapter, which is affiliated with the national United Ostomy Association, also brings in speakers each month to address members' concerns on diet, management techniques, medications and other medical information. The group also publishes a quarterly newsletter for its members to disseminate even more information.
``I don't think I would have made it without their support,'' noted Roy Wilder, a 61-year-old Suffolk resident who had surgery six months ago. ``The misconception is that you're going to be wearing a bag for the rest of your life ... and that's hard for someone to accept. But by coming here, you see differently.''
Sometimes it's not the patient who has the hardest time accepting the reality of the situation, support group members admit, and that can double the hardship and emotional toil for ostomates.
``Right before I had the surgery, my husband left me,'' said Sharon Gibson, a 52-year-old Newport News woman who suffers from Crohn's disease. ``We'd been married 18 years ... but he just couldn't handle it. It was devastating for me.''
For the first year after her surgery, Gibson remained ``closeted.'' But then a friend suggested she get involved in the local ostomy support group near her Illinois home. Before long, she was serving as the group's vice president. A year ago, she relocated to Hampton Roads and immediately joined the local chapter.
``Being with people you're comfortable with really makes a difference,'' Gibson explained. ``Even though my life has improved since my (surgery) and there's nothing I can't do - I swim, play volleyball, travel - you still face all kinds of problems. Like dating. How do you tell someone you have one of these?''
Sometimes, just venting anger with others who understand and share your frustrations and experiences helps, members say.
``At times, you get so mad, but then it helps to see all these other people who have the same problems that you do,'' explained Floyd W. Maxwell, a 67-year-old Virginia Beach resident who joined the support group 17 years ago, just a few months after the first of 17 surgeries.
``I've calmed down a lot now. I don't let it bother me, because with the help of all these people I've made a commitment: I'm not letting this thing rule me. It won't stop me from living.'' MEMO: The Tidewater Ostomy Association meets at 7 p.m. on the second Monday of
each month at the Knights of Columbus Hall at 5201 Kennebeck Ave. For
more information, contact Pete Lampley, current president, at 466-0123. ILLUSTRATION: Staff photo by VICKI CRONIS
Mary Malm, left, hugs fellow support group member Pat Plachinski
after a meeting of the Tidewater Ostomy Association.
by CNB