Prevailing wisdom: Life is hard and then you get a colostomy. When you start wearing your poop in a bag, you can take it as a strong hint that your salad days are drawing to a close.

And that place on your belly where you attach the pouch? It’s called a stoma, meaning “mouth.” Kiss kiss. If you’ve got a colostomy, you’re called an ostomate. Like inmate. And did you know that colostomy pouches blow up on airplanes? (OK, they don’t. See sidebar)

So why is it so easy to find people who think a colostomy is one of the truly fine inventions of human history? “This colostomy is the best thing I’ve ever done,” says Sonny Wood. “It’s absolutely incredible.”

“Do I have any regrets?” asks Pat Miller. “Absolutely! I wish I had chosen this option 11 years earlier.”

Wood and Miller are not alone. People get colostomies for a variety of reasons, none of which include wanting to be cool. Many get them as temporary bypasses during surgery for diseases or trauma to the lower colon. People with disabilities are more likely to get them because they’re weary of involuntaries and diarrhea, they’d like to eat a normal diet, or they want to increase their physical independence. And for these things, say our informants, colostomies work like gangbusters.

Wood, 55, is a T10 para from Hampton, Va. “I went from a life totally programmed around my bowel problem to one where I didn’t have to worry about it at all,” he says. “There isn’t anything I have to schedule around taking care of this colostomy. Absolutely nothing. I have complete freedom.” He hasn’t changed the kind of clothing he wears, and he can eat all foods with impunity. Travel? “Wherever I’m at, if the bag needs to be changed, I can change it. And that takes a couple of minutes. I carry a bunch of Ziplocs with me: I double-bag the throwaways and I’m done with it. It’s wonderful.”

Miller, 38, is a C7 quad from Silver Spring, Md. He first read about colostomies in New Mobility, and was inspired to further research. “The most important question on my mind was, would I be able to care for this myself,” he recalls. “If this would give me independence from my current bowel program, it could literally change my life.”

It did, and he loves it: “No more hours spent on a bowel program to wind up with an involuntary five minutes after I’ve gotten dressed. No more worries about whether or not the attendant shows up. The fear of eating the wrong food and winding up with diarrhea in public is gone. Now, for the first time in over nine years, I’m able to travel with friends.” His colostomy regimen, he says, takes about two minutes a day. Once a week, he spends 10 minutes replacing the entire appliance.

Joey Thompson, of Chevy Chase, Md., had polio in 1931. For her, colostomy wasn’t a matter of choice. She had peritonitis, and would have died without the surgery. “Colostomy gets a lot of bad press,” she admits, “but I thought of it as a helpful and lifesaving thing. I felt very grateful to have it.”

And living with a colostomy? “I’ve never had an accident,” she says. “It’s just never been a big problem.” Oh, there was the time her cat helped out. “He swiped the clip that holds the bag shut, so there I was in my wheelchair holding the bag up in the air and the cat was playing hockey with the clip.”

Like everyone else, Thompson is impressed with the day-to-day ease of caring for a colostomy. Sometimes, she says, it requires no attention. “It just depends on whether it’s a dumping day or not,” she says. “Sometimes I dump it several times a day, sometimes not for a couple of days.”

Since her peritonitis is no longer a threat, Thompson has recently had her colostomy reversed. But while she had it? “I thought it was a wonderful thing. I went right ahead with my life.”

Danny Hinzman, 39, a C5-6 quad from Lakewood, Colo., is another grateful ostomate. “I never worry about my bowels now because I’ve always got a colostomy bag with me,” he says. “You just pull one off and put another one on–it’s that fast.”

But not quite that easy. Hinzman’s fingers aren’t nimble enough for the pouch replacements, so he’s still dependent on help to make the quick changes. “But it’s a lot better than doing a bowel program and having to worry about involuntaries.”

Hinzman got his colostomy because his bowels never did get regulated after his injury in 1981. Too many accidents, too much time spent trying to get them under control. There are downsides, he concedes. He likes to take his shirt off in the sun, and his colostomy is high enough on his abdomen that it shows. “And it kind of puts a damper on your love life,” he says. “But it’s still a lot easier than having to explain to a girlfriend how to do a bowel program. It’s worked out real well” is his final appraisal.

No matter what method Paul Freers, a C1-2 quad from Sunapee, N.H., uses for bowel management, it’s always done by someone else. And nobody else, he finds, is as motivated as he is to do it right.

“What eventually led me to a colostomy,” says Freers, 52, “was a peri-rectal abscess and a fistula brought on by over-aggressive stimulation.” The fix, done in 1996, was ugly, but the results were providential.

“I had no idea how much simpler it would make my care,” he says. Before the colostomy, he spent at least an hour and a half every night on his bowel program, often more. “Now,” he says, “you look and you do it only if it needs to be done. Some days, you just burp the bag and forget about it.” To change out the whole system, he says–a once-a-week chore–seldom takes longer than 30 or 40 minutes.

Another unexpected gain has been the ability to travel. “It’s been a dramatic improvement,” he says. “I can be reclined in the van for longer periods of time than if I had to deal with bowel programs. Using the energy of somebody else to do the driving, I can put in 24-hour days on the road.”

Freers says he pays no attention to diet, and he gets away with it. He does pay attention to cross-infection between his suprapubic catheter and the colostomy site–“I make my assistants clean up like Lady MacBeth”–and his vigilance has so far paid off. Audible gas? “It happens. I’m such a cretin, I usually ask if anybody knows how to play the bongos. Look, Ma, no hands!”

“Do the colostomy,” he bluntly advises people fighting their present bowel programs. “It’ll make your life a lot easier. Just do the damn colostomy.”

For Katherine Watts, 67, from Bellvue, Colo., a colostomy was the solution to several problems. Although she’s been a C7 quad for 33 years, 1994 ganged up on her with a pressure sore, a shoulder replacement surgery and a case of chronic diarrhea caused by C-difficile, a hospital superbug. The colostomy obviated many of the transfers, kept fecal matter away from the pressure sore and made managing the diarrhea feasible.

“I wouldn’t want to go back,” says Watts. Before her colostomy–“even before the megabug came along”–she spent about 70 minutes a day on her bowel program. Since her surgery, she spends 10 minutes two or three times a day–with help–to change the pouch when necessary. Some days, no changes are required. About once a week, she takes a little longer to change the entire appliance.

The biggest downside of her colostomy, Watts says, is that the pouch can get in the way of transfers and reaching for things. “If you’re really active, you put up this bigger front.” She compensates by avoiding tight-fitting pants, and says she hasn’t had any memorably mortifying moments. “I’ve never had an explosion or anything like that. Once in a while it does come up with a press quotation, but I don’t think about that a lot.” Travel? “The new large bags hold a lot,” she says, “so it’s not a problem away from home.”

Of the six people who contributed their experience to this article, two re-use their colostomy bags at least once before discarding. The other four strongly recommend using throwaways–both for the convenience and for the cleaner technique. All are impressed with how well the appliances stay attached–only one has ever had one come off–and urge prospective ostomates to talk to other people with colostomies and to enlist the services of an experienced enterostomal nurse (a.k.a. ET nurse or ostomy nurse).

While all are sensitive to the psychological concerns of having one more bag attached to the body and one more opening into it–especially for very young ostomates–the practicalities, they say, all fall in favor of colostomy. For pure convenience, including sexual convenience, it’s a hands-down winner and few would consider reverting to their old-fashioned ways.

“They can do anything they want to me,” says Sonny Wood, “but they ain’t gonna take away my colostomy!”

Thus: Life is hard and then you get a colostomy and then it gets better.

Stoma
I stared the revolting little bugger in its pouty eye for the first time this afternoon. Oh, it’s plug-ugly, all right, but this unveiling takes place with all the love in the world.

Bev Jaksoniak, an enterostomal nurse who is legendary in her trade, gently removes the well-used pouch and wafer that were attached during surgery six days earlier. If theyíre loathsome objects, and they kind of are, there’s no way to tell from Bevís behavior. She handles them with all the respect and tenderness you reserve for gadgets that do what no others can. She caresses them. She easily makes the unspeakable speakable.

She keeps up a steady patter of advice mixed with earthy humor, and then there the damn thing is. It’s an alien mouth made of raw meat, bright red and puffy and as endearing as a turd in a punchbowl. An auxiliary belly button it ain’t.

To Bev, you’d think it was loveliness incarnate. She describes its topography with indulgent attention to detail. She tells me how to nurture it, to keep it healthy and happy. She brings out a mirror so I can see the portion hidden by the curvature of my anatomy. I stare at it for a long, long time, wondering if we can ever be friends.

“Is this a good time for a hug?” Bev asks. I decline for the moment, for no good reason. Some people, she later tells me, faint when they meet their stomas. I’m moving from staring it down to provisional tolerance.

We go on to making a template, to applying a wafer, and finally to snapping on the pouch itself. It all begins to seem possible, maybe even liberating. Beauty, perhaps, is as deeply embedded in the gift of function as in the jaundiced eye of the beholder.

And Bev? Eventually I’m smart enough to collect that hug.
–B.C.

Colostomy Factoids
There are more than a million people in North America with ostomies–including colostomies, urostomies and ileostomies–and about 86,000 more every year. Many colostomies are reversible, and some can be capped for periods of time when you want to get rid of the pouch. Water won’t enter your stoma, so you can shower with the pouch on or off. Modern ostomy pouches are lightweight, odorproof, leakproof and all but invisible under clothing. Tell your friends, if you must, but there’s no other way they’re likely to know. Most people find their diets limited less, not more, after a colostomy. Liquor? Usually permitted. Changes in air pressure, such as encountered in airplanes, do not affect colostomy bags.

Resource

• Managing Your Colostomy, an educational video and pamphlet available free from Hollister Inc., 800/323-4060 (U.S.) or 800/263-7400 (Canada).
• The Ostomy Book: Living Comfortably With Colostomies, Ileostomies and Urostomies, an award-winning paperback by Barbara Dorr Mullen, an ostomate, and Kerry Anne McGinn, RN, BSN, OCN. Bull Publishing, P.O. Box 208, Palo Alto, CA 94302-0208; 650/322-2855.
• Preparing for an Ostomy, pamphlet available free of charge from ConvaTec, 800/422-8811.
• United Ostomy Association, organization of ostomates with hundreds of local chapters. 36 Executive Park, Suite 120, Irvine, CA 02714; 800/826-0826, 714/660-8624.
• Wound Ostomy and Continence Nurses Society, an association of ET nurses. 2755 Bristol St., Suite 110, Costa Mesa, CA 92626; 714/476-0268.