This invaluable reference discusses every aspect of an ostomya surgical procedure that creates an alternative opening in the body for waste discharge from the kidney, colon, intestines, or bladderfrom the first shock of diagnosis through surgery and rehabilitation. The coauthor's moving and motivational story of her colostomy experience is blended with information on the latest surgical techniques and equipment, providing prospective ostomy patients with both the medical and emotional know-how to confidently approach the surgery. This revised edition also contains up-to-date material on virtual colonoscopies and travel regulations related to ostomy pouches, as well as essential facts on how to safely handle sex, pregnancy, and sports after an ostomy.
|Publisher:||Bull Publishing Company|
|Edition description:||Third Edition, Third edition|
|Product dimensions:||6.00(w) x 8.90(h) x 0.80(d)|
About the Author
Barbara Dorr Mullen underwent colostomy surgery and was the author of two previous editions of The Ostomy Book. Kerry Anne McGinn, RN, BSN, OCN, is a certified oncology nurse at the California Pacific Medical Center. She lives in San Francisco.
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The Ostomy Book
Living Comfortably with Colostomies, Ileostomies, and Urostomies
By Barbara Dorr Mullen, Kerry Anne McGinn, Susan Klug, Ken Miller, Lois Stanfield
Bull Publishing CompanyCopyright © 2008 Barbara Dorr Mullen and Kerry Anne McGinn
All rights reserved.
I'm Going to Have a What?
As my friend Tom says, you never realize how many yellow cars there are — until you buy a yellow car.
Until July 1976, I had no idea that hundreds of thousands of Americans had gained longer lives, thanks to a surgical change I'd barely heard of — an ostomy. Nor did I guess that I'd be one of the lucky ones who would receive such a bonus of time.
Nor that I would need it ...
Though the apple trees and primroses probably bloomed on schedule that spring, I'd been too busy focusing on black clouds and mud puddles to notice them. My work wasn't going well, my body seemed to have lost its bounce, and I'd been in a rut so long I felt bruised. If I could swing it, maybe a vacation — a week or two on Puget Sound — would help? What I needed was a change.
What I got were changes. Instead of two weeks moseying up the coast to the Sound, I got four weeks and two days in a pink hospital room in San Francisco with a distant view of Golden Gate Park. Instead of fresh salmon and wild blackberry pie, there were bland, hot cereal and jello on blue plastic trays.
Those changes were temporary. I also got a slight change in my plumbing — a colostomy — and that's permanent, but less trouble than I expected, and cause for rejoicing. No matter what I used to think!
It all started on a Wednesday in July, near the end of a long-postponed physical. That had gone well. The doctor, Michael Wise, and I were pleased at my rich blood, marvelous blood pressure, all kinds of good signs.
Until that undignified last lap. My body was bent like a tent on the examining table so Dr. Wise could look into my rectum through a special tube called a sigmoidoscope. He'd been talking to put me at ease. Then he stopped. After our banter, the silence was scary.
"There," he said, after a few moments. "Just relax a minute, Barb, while I get someone else to look at this." Someone else was a doctor who specialized in problems of the digestive tract. He agreed the small odd growth looked suspicious. They'd better do a biopsy; they snipped out a tiny sample of the suspicious tissue so that it could be examined under a microscope to see what was causing the changes.
When my daughter Kerry and I returned Friday morning for the results, a cup of coffee (a welcome if ominous courtesy) was waiting for me. Dr. Wise didn't mince words. The sample tissue appeared to be a maverick: a young cancer. "So — we want you to come back early Monday morning, ready to stay a week or two. We'll do a few more tests and then, probably, surgery."
"What kind of surgery?"
A colostomy! I didn't like the sound of that, although I wasn't really sure what it was. Besides, this whole business was absurd! My digestion had always been excellent. Other people got intestinal flu or worried about irregularity; I hadn't even taken a laxative since I was ten years old.
Yet, if I'm honest, it wasn't a total surprise. There'd been small omens, all that spring. In March, suspecting an ulcer, I'd made a note in my journal: "Some concern about bleeding from the bowel. Try to avoid all raw and rough foods and see if it goes away." Later in the month, I added a happy P.S. to myself: "Gone away. Probably just minor."
Even such brief interest in my bowels embarrassed me, I remember. I'd had the usual childhood indoctrination into things we don't talk about. Later, reading Freud had persuaded me that concern with elimination was a dangerous symptom of regression to a childish stage and not (as I know now) intelligent attention due the only body I've got. But, although I tried to ignore them, there were small continuing problems in April, May, and June. Not much blood, but some.
Of course, I knew that a change in bowel habits is one of the seven danger signals the American and Canadian Cancer Societies warn us about, but that couldn't mean me. I had enough trouble without worrying about that....
"Any questions?" Dr. Wise brought me back to July.
"No." I had a million but couldn't find the words.
All that weekend, melodrama, numbness, and a small trace of common sense fought it out. I didn't know much about hospitals and remember wondering silly things. Could I develop film there? Take my typewriter? I tried to stuff Saturday and Sunday so full of friends and chores I couldn't think about Monday, or touch my fears. Still, I wrote a few frightened farewell letters to old friends. "I'll be okay," I sniffled, "probably ... although the doctor does suspect cancer...."
When I checked into the hospital Monday I felt fine, just unreal — the stand-in for a documentary film, starring someone else. Further tests would show how wrong they were, and I'd go home. But more tests all said the same thing: rectal cancer, young but growing and dangerous.
I still didn't believe it.
Surgery would be the next Monday. Besides frequent visits from my daughter and her family, three other things cheered me during that week of waiting.
Recently, I'd finally read All Creatures Great and Small. Inspired by veterinarian James Herriot's account, I found myself identifying with the animals he'd treated. As doctor after doctor examined me, remembering that book helped. I was less a person brought low by a vast dose of bubble-gum-flavored castor oil than an ailing cow with the scours.
The day we'd gotten the diagnosis, Kerry (with some faint memory of an organization for people with this peculiar surgery) looked in the phone book under "Colostomy," called, and learned that the Golden Gate Chapter of the United Ostomy Association (UOA) met that very night in San Francisco.
Although I didn't go with her, that meeting cheered us both. "They're an amazing group," she reported, "men and women of all ages, great fun, and most of them seemed to feel great." Kerry had won two prizes at the meeting: a new dish towel and a bottle of champagne. Good omens. Not so much winning as discovering that people who had ostomies were lively enough to think of things like prizes.
One of the women had convulsed them with a story from her trip to Hawaii.
"You mean people with ostomies travel that far?"
You know they do. And anyway, that's not the point. This woman had always wanted to go to a nude beach, even before her surgery, but she'd never had the nerve. In Hawaii, she decided to risk it, with just a camera over her shoulder and a daisy-sprigged ostomy pouch on her belly. She'd worried about what people would say, but nobody paid any attention except for one person who said, "What a neat way to carry your film!"
That silly happy story heartened us all week, and there was hope as well as information in the brochures Kerry had picked up at the UOA meeting. I read them until they were limp — stained with coffee and probably a few tears.
Basically, I learned, there are three common types of abdominal ostomies. All are surgically constructed detours in which a channel of elimination is rerouted so that waste (feces or urine) is expelled through a small new exit, the stoma, in the abdominal wall.
In a colostomy — the commonest and the kind they said I would have — part of the colon is removed or disconnected; the rectum and anus may be removed. The end of the remaining colon is brought to the surface through the skin of the abdomen and stitched in place. Cancer of the colon or rectum is one of our most common internal cancers and is the most frequent reason for a permanent colostomy; there are all sorts of reasons for temporary colostomies. Colostomy surgery, the UOA brochure promised, saves lives or makes them longer than they would be without surgery. Now that I've met some people who've had their colostomies for twenty or thirty years, I believe it.
An ileostomy is sometimes necessary for severe ulcerative colitis or Crohn's disease. In this case, the entire colon is removed or disconnected, and all or part of the rectum may be removed. The end of the remaining ileum, the last part of the small intestine, is brought through the skin of the abdomen, folded like the neck of a turtleneck sweater, and stitched in place as a stoma. The result, like a miracle, is often an instant cure.
The third type of ostomy is a urostomy, or urinary diversion. In this operation, the bladder is removed or bypassed and urine is redirected through the opening in the skin to a leakproof, external pouch (sometimes called an appliance, or even a bag). This surgery can be done to extend life or cure disease. Sometimes it is performed to end months or years of dribbling of urine.
Before surgery, I was less interested in all of these anatomical details than in hearing about the lives people led after such surgery. Thanks to one sad true story I knew, I imagined I might be bedridden or at least housebound for a long time. This, I learned, was unlikely unless I was silly enough to choose to hide. People who'd had ostomies were skating, skiing, dancing, making love, and having babies. They swam, jogged, managed large corporations, preached, piloted airplanes, even rode Brahma bulls in rodeos!
And there were so many of them. Of us, I amended, somewhat tentatively. I'd thought such far-out, oddball surgery must be rare — I'd not heard much about it — but ostomies are relatively common. Some estimate the annual total of ostomy operations at more than 70,000 in the United States and Canada alone. Some are temporary and some are permanent. These changes happen to people of all ages, from newborn babies with birth defects to great-grandparents with bowel obstructions.
Book learning is all very well, but right then I needed comfort and reassurance more than facts. My next piece of luck was remembering my friend Irv. Although I'd never asked for details, I'd heard whispers about some mysterious but lifesaving rearrangement of his intestines. An ostomy! Since Irv and a friend of his had stayed with me while they were on a bicycle trip that spring, I knew he was in grand health now, whatever they'd done to him.
Irv came to visit as soon as he got my message.
"It's no big deal, Barb. Only another kind of challenge, and you like challenges."
"Some kinds. I like to pick them."
"Sometimes the unexpected ones are better."
"I hope you're right."
Prickly though I was, Irv's visit proved a comfort. So did other visitors, cards and calls, and books and flowers. Reassuring, but still unreal. Why did I need get-well cards!
The surgeon, Robert Reinker, allowed plenty of time for us to talk the day before surgery and was sympathetic as he showed me what they planned to do and where, drawing on my belly with a wide brown felt-tip pen.
"You'll put the darned thing low enough so I can still wear a bikini, won't you?"
"No promises, but I'll try, Barb, and there are sexy one-piece bathing suits, you know."
Surgery was just like the TV doctor dramas had taught me: blood transfusions, a tangle of tubes, many hours in the recovery room with nurses hovering. And enough time drowsing so that it was still hard to believe they'd done anything at all — until I looked.
It took me several days to find the courage to do that. Under a bandage, a long and primitive-looking incision straggled up the middle of my abdomen. With those big black stitches, not even neat, I looked like a badly trussed turkey (although you usually use white string for that). I cried when I saw how they'd slashed through my once neat navel.
Slightly east of the incision, a small, clear plastic bag was adhered to my abdomen over the new opening — the stoma. Although this thing was both symbol and means for my new way of elimination, I found it harder to accept than the incision. It was so red! Maybe, as it healed, it would fade? No, a stoma gets smaller with time, but the color remains poster bright, the natural color of the intestine of which it's still a part.
Behind me, where my anus had been, I felt rather than saw another loosely basted incision, well buttressed with drainage pads. It hurt.
Looking at what they'd done finally made the changes almost real and brought the first wave of sorrow out into the open. Sorrow and sometimes anger, splattering out in brief flurries over trifles. Why did this happen to me? I'd always eaten my spinach.
The tears embarrassed me, and so did the black moods, but I learned that grieving only seems irrational and childish — it's a necessary step in accepting a loss. Until things healed a little, my body image was askew and my post-operative depression normal, even healthy.
In that drowsy post-surgical time, filled with assorted discomforts but little real pain, everyone pestered me to do a great many things I had little (though increasing) interest in doing. Walk up and down the long halls. Stretch. Breathe deeply. Finish your chicken broth. Smile. Swallow this. Swallow that. Turn over. Learn to take care of your stoma. I loved them all, or most of them, if only they'd leave me alone ...
But learning to manage my stoma couldn't be postponed forever. With an ostomy, we lose the muscular control we've depended on ever since we were first toilet trained. Regulating the bowels or urine flow in one way or another is essential — physically, psychologically, and socially.
Although I'd read about the choices people with colostomies have, I balked at trying them. Dr. Reinker said he'd have an ET come to see me. From my cram reading, I knew that an ET is an enterostomal therapist, a professional who is expert at helping people learn to cope with all kinds of ostomies, assisting with both technical know-how and the psychological adjustment to being different from what we used to be. (Now, almost all ETs are registered nurses as well: ET nurses.) But why did I need an expert to teach me how to go to the bathroom?
Jean Alvers, ET, came that evening after dinner. The day had been one long sniffle, and I was stretched out, awash with melancholy, when she bounced in, smiling so warmly I thought she was ten feet tall! (Weeks later, I realized she's shorter than I am.) Jean has an ostomy, too; later I learned that she was one of the pioneers who'd helped develop the profession of enterostomal therapy, many years before. Now, there are close to 2,500 ET nurses in the United States and Canada. Real training centers have replaced early ingenuity.
With the help of Jean's spunk and know-how, I began to see that an ostomy was not without hope, or even humor. And to believe that problems could be solved one at a time. The next morning when a nurse announced that she was going to do such and such, I shook my head. "I'm going to do it; you may watch if you wish."
With help from what seemed like hundreds of people, I'd begun to reclaim my own body and my own autonomy. I'd stopped being the colostomy in the corner bed. I began to be Barbara again, the Barbara who had had colostomy surgery — along with measles, chicken pox, flea bites, sunburn, diphtheria, whooping cough, hepatitis, and assorted other maladies from which I'd also recovered. Strong though fuzzy convictions about my responsibility for my own body revived as I asked more questions, and I balked some, knowing that I had to be a working member of my treatment team.
I began walking farther each day, not because Dr. Reinker or a nurse said I must, but because I said so. The weekend before I was discharged, I dressed, picked up my two-hour pass, and went for a long walk, halfway around the lake in a nearby park. On my way, I stopped to marvel at every dandelion, every wind-bent tree, every ugly mutt chasing gulls. Part of getting well seemed to be rediscovering how wonderful life was, in spite of everything. Or because of everything! The changes I'd had — and the risks taken — brought life into new focus. I began to sense what people meant when they said that surgery could be a time of growth as well as pain — pain that was becoming harder to remember, or even to imagine.
Leaving the hospital was a bigger wrench than I'd expected, in spite of 5 A.M. blood pressure readings and other nuisances, and there were shaky patches in the weeks and months ahead. Unscheduled naps. Shaky legs. Storms of tears, blowing up out of nowhere. I didn't enjoy my first swim, or my second — but the third was great.
Excerpted from The Ostomy Book by Barbara Dorr Mullen, Kerry Anne McGinn, Susan Klug, Ken Miller, Lois Stanfield. Copyright © 2008 Barbara Dorr Mullen and Kerry Anne McGinn. Excerpted by permission of Bull Publishing Company.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
List of Illustrations viii
Dear Reader ix
I'm Going to Have a What? 1
What Is an Ostomy? 15
It's Your Body 31
Before Surgery 41
Surgery, and Just After 51
On the Mend 59
But How Do You Really Feel? 71
That Strange Big World Out There 79
Permanent Colostomies: Changes and Choices 87
Ileostomies and Alternatives 105
Life Without a Built-in Bladder 123
Pouches and the Skin They Touch 139
Pouch Skills 161
Temporary Ostomies 177
Eating Well 197
Catnaps, Strolls, and Good Belly Laughs 209
You're Looking Great! 219
What About Sex? 225
Work? Of Course! 241
Swimming, Skiing, and Other Diversions 253
The Other Side of the World 265
Pregnancy? Yes! 279
Children with Ostomies 287
A Word to the Teenagers 297
Checkups and Follow-ups 305
Helping Hands: Ostomy Organizations and ET Nurses 319
In the Family 339
Resources to Know 345