Grand Rapids Ostomy Association Helping People with Ostomies and Alternate Surgeries in Southwest Michigan "Call Us We're Here to Help 616 752-8317"

Following is an article that was published by Hollister Incorporated in 1976, almost a quarter century ago. It was written by Barbara Steiger, Highland Park Illinois. Even after 24 years, It is timely, poignant and beautiful. A must reading for any Ostomate but especially anyone new or feeling alone.

My Ostomy And Yours by Barbara Steiger, Highland Park, Illinois

I have an ileostomy.

Why am I telling you this? Because you would never know if I didn’t.

Now, if you were here with me, you would probably give my abdomen a quick appraising look, exclaim, "Do you really?!" and then proceed to pepper me with 101 very valid questions, starting with, “Why do you have it?” and ending with, “How does it work?” For it seems that just about everybody has heard of ostomy surgery—or knows someone whose aunt has had it, but few people outside of the ostomates themselves know any of the details about this most interesting and amazing surgery. To a person learning about ostomy surgery for the first time, whether as a merely curious bystander or as a dubious potential candidate for the surgery, an ileostomy or colostomy sounds frightening or distasteful, but consider that it is a life giving, life saving, life perpetuating operation that replaces debilitating disease with good health and hope.

Each year, more than 80,000 men, women and children have an ileostomy or colostomy operation to cure intestinal disease. Many have it to remove a cancerous area of the bowel; some have It to cure ulcerative colitis; others have it because of granulomatous enteritis (Crohn’s Disease); and a minority have it because of an accidental injury to the intestinal tract, such as a gunshot wound. Over the years researchers have studied and rejected several theories of what causes ulcerative colitis and Crohn’s Disease— two diseases which are quite widespread and whose rates of occurrence have been increasing over the past 20 years. They are not infectious; not caused by environment. The theory that they are caused by emotional stress is no longer widely held (although such stress may trigger or worsen the condition); it isn’t an allergy to an outside agent. The theory being pursued now is that these are auto-immune diseases, conditions wherein the lining of the bowel loses an important identifying “code” system causing the body to reject the bowel lining as if it were foreign material. The results are diarrhea, bleeding, cramps, and other distressing symptoms. Usually these diseases are treated and controlled with powerful Sulfa and cortisone drugs until the disease either goes into remission or reaches the point where surgery is mandatory.

To understand the role of the intestine, let us follow the path that food takes as it passes through and is digested by the body. Food first enters the body through the mouth, where it is cut into small pieces by the teeth and broken down somewhat by the saliva. The food is then swallowed and passed to the stomach down a long fleshy tube called the esophagus. Stomach muscles and gastric juices act on the food to prepare it for absorption by the blood. After several hours the pulpy mass of food passes Into the small intestine, a 20-foot long tube that is folded and packed into the abdominal cavity. More fluids from the liver and pancreas act on the food, further digesting it, extracting the valuable elements from the food and passing them into the blood stream. This small intestine — named not for its length but for its narrow diameter — is where most digestion takes place. At the end of its processing, all that remains is water and waste material, which then passes into the large intestine, or colon. This portion of the intestine is about five feet long and of a much larger diameter (thus, its name, large intestine). The colon’s function is to absorb the water from the waste material, to transport waste through its length, and to store it until it is ready to be expelled from the body through the anus.

In ostomy surgery, the affected section of the intestine is removed or bypassed. Thus, a person who has a colostomy usually has had the rectum and a portion of colon removed; the person with an ileostomy is usually minus the entire colon and has had a portion of the small intestine removed as well. An opening is made in the lower portion of the abdomen, and approximately three-quarters of an inch of the remaining, healthy, intestine is brought out through the wall of the abdomen where it is turned back upon Itself and sewn in place. This opening now provides a place for the excretion of body wastes; the rectum, if it is left in, becomes nonfunctional. The protruding piece of intestine is called a stoma. Depending on the portion of the intestine brought out, it can vary in diameter from about ½ to 2 inches. Because a person has about 20 feet of small intestine and five feet of large intestine, he can live quite well without a portion of his small intestine and without his entire colon; most digestion — necessary for life—takes place before it reaches this point. In addition, the portion of the small intestine that does remain “learns” to assume some of the water-absorption role of the Intestine that was removed.

The terms “ileostomy” and “colostomy” are basically geographic terms, describing at what point the intestine has been severed and brought out: an ileostomy opens into the small intestine and a colostomy opens into the large intestine. Since a colostomy usually opens into the lower portion of the colon, the waste material expelled by it is of solid consistency, much like that from a “normal” system. Colostomates, then, can often control or regulate their discharge, much as the person who goes to the bathroom the same time each day. They learn their colostomy’s “habits” and can control those habits somewhat through diet or an irrigation process. Thus some colostomates can simply cover their stomas with a gauze bandage or a small disposable closed plastic pouch. Ileostomy discharge, on the other hand, because it comes from higher up in the system where water has not yet been fully removed, is considerably more liquid in consistency. The ileostomy is most active after meals, but its activity is highly irregular and it cannot be controlled in its action. Thus ileostomates must wear a fitted pouch or appliance at all times to collect the liquid discharge and to protect their skin from the irritating effects of digestive juices not found in normal stools.

What does it feel like to have an ileostomy or colostomy? Well, sitting here at my typewriter I feel no different than you or anyone else, sitting and reading this article. I have no sensation of having a stoma. My ileostomy appliance, a pouch which I have covered with an attractive fabric, is taped onto my abdomen about one inch to the right of my navel; the pouch is tucked into my underpants. I am not conscious of it at all. It feels merely like an item of clothing to me. I do not feel the muscular action of the intestine as it works to push the waste material out through the stoma. I am only aware of the presence of the pouch after a meal, when it starts to fill with fairly liquid discharge, signalling that it is time to open the spout at the bottom of the appliance to empty the contents into the toilet. At all other times, the appliance lies flat against my body, completely unobstrusive to the public and to myself.

Happily, modern technology has provided me and all other ostomates many choices in terms of ostomy equipment. For instance, when I selected my appliance I had a choice of materials: plastic, vinyl, or rubber; opaque or transparent. Appliances are usually oval or sleevelike in shape; they have an opening near the middle of the top, and this opening is designed to fit over the stoma. The bottom of the pouch opens for easy emptying and is secured when closed by a clip or rubber band. The appliance can be adhered to the body with a special cement, adhesive discs, or a specially formulated karaya gum substance. I chose, with the advice of other ostomates and a helpful surgical supplier, the method and materials that were easiest and most comfortable for me. Other ostomates choose what is best for them —their skin, their body contours, their life styles. It Is a purely personal choice. For instance, I tape my appliance on for additional security; others prefer to support the appliance with an elastic belt that circles their waist. Sometimes I shower with the appliance on, sometimes with it off; the water hurts neither the appliance nor the stoma (water will not flow into the stoma opening). Some ostomates use a disposable pouch change it daily and throw the used one away; others keep a pouch on for about three to seven days before removing it to wash, dry, and reuse it (this type is referred to as a “permanent” appliance, and it is generally made of vinyl or rubber for long-term use). The point is that the number of products available to enable the ostomate to find the perfect combination of service and comfort for himself is staggering. There is literally something for everyone And what’s more, there are many knowledgeable and competent people, other ostomates, surgical suppliers, and enterostomal therapists - available to help the ostomate find that something. The companies doing research in this area and producing products are numerous and the surgical supply and pharmaceutical stores selling these supplies dot every community. The major problems these companies are trying to solve are protection and comfort—so that the ostomate has no need to think about or consciously feel his appliance. The products are designed to control odor, to provide a secure, non-leaking pouch that is lightweight, inconspicuous in size, and most Important an appliance or sealant that will prevent the discharge from ever touching the skin of the wearer. This is critical because the liquid discharge is active with enzymes—the enzymes that help break down the food as part of the digestive process. These enzymes can corrode or break down the skin surrounding the stoma and thus must be kept off the skin. Fortunately, medical technologists have developed a number of alternative solutions to all of these problems. And this is important. For finding the right equipment was certainly critical to my sense of well-being; it put me in the role of “master of the situation” — a role I dearly cherish. Once I found the right combination of materials for myself I could proceed to forget that I wear something that other people do not or that my body functions differed from anyone else’s. This is, in fact, the moment of victory all ostomates wait for.

What does it feel like mentally to have an ileostomy or colostomy? An interesting question. Other types of surgery —gallbladder, kidney, appendix, and the like —do not have the psychological connotations that accompany ileostomy or colostomy. In other kinds of surgery, a part of the body is removed or repaired. The patient recovers his strength, goes home, and that’s the last of it except for a small scar and a tale. In other words, most operations are non-emotional. Ostomy surgery is different; it has psychological repercussions because it not only removes something from the body, but it requires that the patient learn how to handle his bodily functions in a new way. Self-image is at stake. The worries and threats common to all new ostomates overwhelmed me at first. I questioned my doctor at length, and I questioned myself~ How do I take care of an ostomy? What will my friends say? How will my husband (or for others, a wife, a boyfriend, a girlfriend) regard me? Will I be able to return to work? Can I participate in sexual activities anymore? In athletics? Do I dare go out in public? to a restaurant? on a camping trip? And on and on and on.. .The questions were endless. Viewed from a hospital bed, the problems seemed insurmountable. Not only did my body have to recover, but my mind, my sense of self, my spirit as well. Necessarily, this is an easier process for some people than for others. For instance, all of this is generally easier for the person who, like myself, has suffered for years from the disease that led to the surgery. Surgery for me was a relief, especially after adapting to the technicalities of handling my ostomy. It ended the years of distress, pain, fear, frustration, medication, expense — and I am grateful. Recovery is understandably more difficult for the person who has been ill only a few weeks with a rapidly progressing form of the disease or who has suddenly suffered a gunshot wound or other short-term injury that requires the operation. Regaining his sense of self-value and acceptance is probably easier for a person who is warmly loved by his spouse and children and other family members than for the lone individual, the unmarried person, the child, or young adult. The hospital staff and the family—and the family, I think, is the key—have a supportive role, in showing the new ostomate that he is a person of great strength, potential, and continuing value (probably more value now that he will be strong and well!) to both his family and society. If the family is relaxed and matter-of-fact about the person’s new situation, the patient too will relax and more quickly “feel at home” with himself and others again.

In addition to the family, there are other people to look to for support. In some hospitals there is now a special aide — the enterostomal therapist or “E.T.” (often a specially trained registered nurse)—to help provide information the patient needs to understand the workings of his intestine and stoma. The E.T. shows the new ostomate some of the materials available for this “new way of life” and teaches him how to care for himself before he goes home to face his new situation by himself. These therapists are often available for consultation on an out-patient basis as well. And there are hundreds of ostomy groups throughout the United States and the world, which at the patient’s request and with the doctor’s permission, send their very active members to visit new ostomates in the hospital and at home. These visitors are both spirit boosters and givers of information, for they come well-dressed, tanned, healthy, and obviously “normal” to visit the patient and represent to him what the patient himself will look like and be in a very short time. A visitor of this kind need not even say anything to the patient to elicit a warm smile and a wide-eyed “I don’t believe it! You have an ileostomy?” No words need be spoken for the new ostomate to see and understand that living Is clearly the order of business and normalcy the course it will follow. The visitor, because he or she has gone through the same doubts, questions, and temporary problems and has found solutions, can guide the new ostomate to the answers he seeks and instill the confidence so needed at that point in time.

A supportive family, contact with another ostomate, and the easy acceptance of friends and strangers were valuable aids to me as a new ostomate. So were group meetings where I could ask questions, exchange information, and see new materials. With this kind of help, immediately after surgery, I quickly found the best equipment for myself, gained self-confidence, and felt genuinely healthy and ready to face the world. I was literally a new woman. For those of us who suffered through years of ulcerative colitis or ileitis, ostomy surgery is well worth the price. The relief, the absence of drugs, the new feeling of well-being, being able to travel and be active again are the rewards—not only for me—the one with the stoma—but for my family as well. It is amazing surgery— giving life to thousands of people young and old, giving us the health we had forgotten could exist, giving us freedom from hospitals, drugs, discomfort, fear.

I said the price is small. I, like other ostomates, must chew my food well to facilitate its passage through the intestine and the stoma. There are a few hard-fiber foods I’m better off avoiding— popcorn, for example. I must drink extra fluids to offset the excess fluid loss common to ileostomates and thus prevent dehydration; this is particularly true in hot weather, after athletic activity, and during flu-type illnesses. Similarly, I must make sure my potassium and sodium intake is sufficient. I cannot wear a bikini (for which the world is grateful, I am sure), although I do wear a two-piece bathing suit. I will not bellydance. Small price for health. Those are my limits. Now, as to my non-limits: I can eat what I like; I can have children; I can play tennis; I can work; I can enjoy sexual activity; I can care for myself and my family; I can wear tight knit pants or not as I choose—my wardrobe is fashionable. I can wrestle with my seven-year-old son—and sometimes I win. I can smile, dance all night, ride my bicycle. Unfortunately, I can also do housework, yardwork, housepainting, laundry, take out the garbage, and shovel snow off the driveway. The point is — I can do almost anything I want. I can tell people I have an ostomy, If I care to, or not tell them, if I care not to; they would never know if I did not tell them. I am insurable, for now I have a long life expectancy. I have energy and a zest for living. My family can’t keep up with me now. Before I could not keep up with them. I am well. I am well. I am well.

And I now understand what “good health” Is. Never, in the 12 years, beginning when I was sixteen, that I had ileitis, did I let my condition get in the way of my life: I went through college, graduated with the honors I sought, married, worked, had a child, played tennis, traveled, kept house, gave dinner parties. The 12 or so hospital visits were sandwiched in, an inconvenient but not serious obstacle. I never permitted myself—and I have heard other ostomates say this as well — to consider myself a sick person. But now that I am truly well — now that I consider a mere cold to be an intrusion in my life — now I understand that before I was not well. Health, like so many things, is relative. Now I do all the activities I did before, and more, without that repressed, lurking fear that at any moment I will have to lie down, take a pill, find a bathroom, get to an emergency room, or leave my family for another extended stay in the hospital. I am working now besides caring for my family; my schedule is hectic, which Is the way I like it; my activities are worthwhile, which is important to me. And my body is as active a participant In my life as my head. This was not always the case before. My only complaint is that the surgery did not improve my backhand as much as my doctor had promised.

I agree completely with a very perceptive woman I know, an active woman who has had an ostomy for years: "Ostomy surgery is a "beginning" of life, not an end".

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