GLOCONTACT Vol 24 Issue 2, MAY, 2008

The newsletter for the Gay/Lesbian, and Bisexual Ostomate (or other type of diversionary procedure) their Partners, Family, Caregivers and Friends

Ya Gotta Laugh

by: Brenda Elsagher

via: Winnipeg Ostomy Association, Secure Start a quarterly newsletter from Hollister Inc, (Autumn 2006); the South Fraser Connection, Nov 2007; Vancouver “Ostomy Highlife” Jan/Feb 2008; Ostomy News On-line, Okanagan Maineline Ostomy Association, January, 2008

Stand-up comic and author Brenda Elsagher finds the lighter side of having an ostomy.

One day our whole family went to the clinic. I was having hemorrhoids examined, my husband was having a mole removed, my five-year-old son, John, was being tested for strep, and my three-year-old daughter, Jehan, was along for the ride. Some families go to the zoo.

My appointment took the longest, and two hours later the doctor said, “I’m almost 100% sure that you have cancer of the rectum.” I was a 39-year old-mom trying to comprehend the horror of what he said while my children played at my feet. Almost immediately I told the doctor, “You have to make me well. I intend to dance at my children’s weddings.” Three weeks later I had my rectum removed, a hysterectomy, an appendectomy, vaginal reconstruction and a permanent colostomy. Couldn’t they throw in a complimentary tummy tuck while they were at it?

My children motivated me to get through the painful healing process as did the thought of my husband ending up with a better second wife. Many days I put on clothes and a smile when it was the last thing I wanted to do.

From the moment we knew where we were headed, we lined up support. One friend took calls from church friends who delivered meals every other day for five weeks. Another came over on the days my husband was a work. Many people did house cleaning and sent prayers, flowers, gift certificates and notes. My co-workers even picked up some of my work and helped run things smoothly in my absence.

We talked simply but directly with our children about why Mommy couldn’t hold them for a while and the reason they had to be careful around Mommy’s tummy. “Colostomy” and “pouch” became as much a part of my children’s vocabulary as “Fun with Dick and Jane.” My children can’t remember a time when I didn’t have an ostomy.

When they were young, I popped into a video for them to watch in my bedroom as I spent a hour irrigating in the adjacent bathroom. Irrigation isn’t for everyone who has a colostomy, but for me it became an odd blessing.

As my confidence with my ostomy and my children grew, I would allow them to play in the yard while I was in the bathroom. I always kept the window open so I could talk to them below.

One day I overheard a neighbor child ask, “Where is your mommy?” My son answered, “She’s in the bathroom. My mommy poops out her tummy.” We all laughed hysterically. And years later as I rushed to get my kids off to school, something wasn’t adjusted right. I was jut about to pour their milk, when splat! A pile of poop sat on the kitchen floor. My son looked at it and said, “Gross.” Having small children while dealing with an ostomy is not only possible, but it helped me focus on something besides myself. My children see me as a busy, strict, funny, loving, crazy mom who happens to live with an ostomy. They are teenagers now and not bothered by my ostomy at all. These days they’re only concerned when my wallet it empty.

(Brenda Elsagher is a national speaker, comic, and author of, If the Battle is Over, Why am I Still in Uniform and I’d Like to Buy a Bowel Please! Her books can be ordered at http://www.livingandlaughing.com. She welcomes questions or comments for her Secure Start column at brenda@livingandlaughing.com)

Being ACTIVE with GLO

Hi everyone! Eric here. I am making a request of all our members. We need to have some new people step up and volunteer to become members of our Board. Some of us have served since time split into day and night and we would welcome some additional help. There are some ideas that we would like to explore that need more people to become active and make them happen.

We hope that every one will like the surprises that are planned to go into place in October. The proposals will not cost you any money. However, they do need an investment of some of your time. In order to help GLO’s continued growth and do the job we need greater participation. We are still the best basic resource for information to assist the GAY and LESBIAN ostomate and our outreach needs expansion.

For many of you GLO has been very important in your acceptance of life with an ostomy.

We want to reach out to a larger number of ostomates who are GAY/LESBIAN and help them make an easier adjustment with their lives..

Will you give a few hours a month to help us with these projects? Email us at glocontact1@aol.com or thadbear@sbcglobal.net. We will be happy to answer your questions and have you on the GLO Board.

Drug Therapy for the Ostomate

by: John J Wroblewsky, R.Ph.

via: Ostomy Management and the Winnipeg Ostomy Association, The Re-Route on-line, Evansville, IN (January, 2008)

The most well-adjusted ostomate can run into trouble when he or she starts taking medication. The potential of side effects or adverse reaction increases as the number of medications the patient is taking goes up. Compounding the risk is that consumers today are turning to over-the-counter medications and are prescribing for themselves to offset rocketing health-care costs. A few basic principals of drug use are, therefore, important to keep in mind. A drug can’t do any good unless it goes to its target organ. This simple idea is all that’s behind the concept of bio-availability. In almost every case, a drug must be absorbed into the systemic circulation before it can exert a therapeutic effect. Since drugs are absorbed primarily through the intestines, ostomates can be at a particular disadvantage.

Many factors influence the absorption of drugs. These factors include the chemical nature of the drug, the dosage from in which it is introduced into the system, and the condition of the patient who is taking the drug. Iron for instance, and vitamin B12 are absorbed only in the upper ileum. While the chemical nature of most drugs allows absorption along a significant length of the intestinal tract, the shorter the functional intestine, the less will be absorbed. Only a few drugs such as alcohol, can be absorbed to any great extent through the stomach. Another chemical factor involved in bio-availability is the intrinsic solubility of the drug. Some drugs are rather insoluble in the digestive juices and absorption into the bloodstream will vary greatly, even in patients with an intact bowel.

Clearly, a patient with a shortened ileum is at risk for mal-absorption of any poorly absorbed drug. The dosage form, too, is a major factor in bio-availability. As a general rule, the smaller the particle size provided to the GI tract, the easier it is absorbed. True solutions have the best bio-availability by the oral route and suspensions are almost as good. chewable tablets have a pretty good record if they are chewed well; in most cases they are better than capsules or compressed tablets.

Ostomates who have had a significant portion of their intestine removed may achieve better absorption by emptying the contents of a capsule into applesauce, or crushing a compressed tablet and adding the powder to food. A word of caution though = not all tablets can safely be crushed, and not all capsules should be emptied. Generally speaking, timed release tablets should not be crushed, not should time released capsules be emptied. The results could be 12 to 24 hours worth of medication being released all at once. Certain drugs can react chemically with foods.

Tetracycline is notorious for combining with heavy metals and ions such as calcium, which is present in milk, yogurt, ice cream and other dairy products. Enteric-coated tablets should never be crushed. The reason those tablets are coated is to prevent acid degration in the stomach or to protect the mucosa from irritation. Enteric-coated are a poor choice for ostomates. Entire tablets have been removed intact in an ostomy bag. A patient’s diet can affect the drug absorption too, either by absorption of the medication onto the food, chemical interaction, or by delaying gastric emptying time. Since many drugs are affected by acid, prolonged exposure to stomach acid may decompose the medication. Physicians, pharmacists and especially enterostomal therapists have an important role in educating ostomy patients so they’ll know what to expect and avoid in drug therapy. Ostomates owe it to themselves to be informed and alert, to minimize risks and to ask when there remains but the slightest doubt.

Allergic Reactions

by: Kathryn Hoyman, RNET - Minneapolis Chapter

via: UOAA UPDATE 2/2008

Many times I hear that people are allergic to adhesive tape or paper tape or skin prep or any number of different products that are used in ostomy care. Allergies may occur with any product. They may occur with the first use of a product or after years of using a product without problems.

Actual allergic reactions to ostomy products are not common. But, some people do have issues relating to an allergic reaction to certain products at certain times. And many people have sensitivities at one time or another.

Many conditions appear to be an allergic reaction but are actually another problem. It is important to know whether or not you are truly allergic to a product, because eliminating products reduces your options. Believing you are allergic may cause you not to try a pouch that might be perfect for you.

Allergic reactions are usually severe. They will cause blistering and wet, weeping skin wherever the products touch you. Two situations are frequently labeled as allergic by mistake:

First, if a skin sealant wipe is used, it needs to dry completely to allow the solvents to evaporate. If the pouch is applied while the solvents are still on the skin, sore skin can easily occur. Since the solvents can’t evaporate through the skin barrier as they can through the paper tape collar, this will look like an allergy to the skin barrier.

Second, each time you remove a pouch, the adhesive takes with it the top layer of dead skin cells. However, if you are removing a pouch more frequently than it was manufactured to perform, cells can be removed faster than they are replaced (Some barriers are made to be removed daily while some should not be removed more often than every three days. Your ET and the manufacturers will help you determine the barrier that’s best for your needs.) This is called “skin stripping.” Everyone’s skin reacts differently to having tape removed. But it’s important to be gentle and not remove a pouch more frequently than necessary. Skin that is stripped will be sore in some spots and not in others. Sometimes skin around the stoma becomes fragile and strips easily. A barrier, tape and pouch with a very gentle adhesive must be found.

To test whether you are really allergic: Take a small piece of the test material and place it on any convenient part of your skin far away from your stoma. After 48 hours, take it off and see whether you are reacting. If pain, itching or blistering occurs, take it off immediately.

If it’s an allergy you will react. If you have a history of allergies, test in this manner before trying on any new ostomy product. It is better to have half an inch of sore skin on your leg than around your stoma. You need healthy skin around the stoma for a good seal and satisfactory performance from an ostomy pouching system.

If you develop an allergy to a product you have used for a long time, you can call the manufacturer. They may have made changes in the manufacturing process. Calls from users are sometimes their first notice that the new improvements are or are not working.

Skin Attention

via: Evansville Ostomy News, Golden Spread Ostomy Association, Amarillo, TX

Some ostomates can use anything on the skin and “get away with it.” Others have to search for just the right combination of products for satisfactory use. New ostomates benefit from the follow-visits to the ET because careful consideration is given to the various products used around the stoma area. If you are experimenting on your own, consider the following information for using different products. Patch testing is recommended before proceeding to use the new product. The skin on the inner surface of the arm or leg or the opposite side of the abdominal area from the stoma are good areas to use for a simple test. For example, cut a piece of the washer, tape, disc, etc., and affix it to the chosen area. Secure with a strip of micropore tape and leave on the area for 48 to 72 hours.

Editor’s note: Be careful on the tape too; it could be a problem also. Any burning sensation or itching during the testing time could signify sensitivity to the material being used and therefore, should be removed immediately, washed and dried well. After 48 to 72 hours, remove the patch and if there is no redness or irritation, it is safe to assume that the product can be used. With some persons, a “delayed reaction” may not occur until a few days later. For more extensive testing than this - contact a dermatologist.

Too Much of a Good Thing

by: Sharon Williams RNET

via: UOAA UPDATE 2/2008

Do you need one-and-one-half hours to change your pouch? Does your stock of ostomy supplies resemble the store-front of a local pharmacy? Do you need a “road map” to remember what product goes on first, second, third, etc.? If so, you may be the victim of the “too much of a good thing” syndrome.

Occasionally an individual will come to the Stoma Clinic carrying a large sack containing a vast array of skin care products. He explains “all items are needed in order to apply my pouch.” Unfortunately, the reason the individual usually seeks assistance is due to a problem with pouch adhesion, skin breakdown or inability to afford ostomy products. One particular gentleman who comes to mind was utilizing a special skin cleaner and cream, two types of skin cement, a double-faced tape disc, a paste, AND a popular skin-barrier wafer before the pouch was applied. He had started out with a fairly simple system of ostomy management. However, in his quest to achieve what he felt should be a seven-day wearing time with his pouch, he had been adding product after product. Besides the many items he was now using, he had what he described as a “closet full of products at home.“ After checking his abdomen, it became obvious that what he needed was a product change in the convexity of his pouch and NOT the addition of another product. He also needed a more realistic view of wearing time for his particular situation. Realistically, not everyone may be able to achieve a seven-day, leak-free wearing time. It is much better to anticipate leakage and establish a regular time prior to this. Here are a few hints to remember to help achieve a successful ostomy management system.

Keep it simple. Do not use extra cement, skin-care products, etc., unless absolutely necessary. Sometimes, extra products actually interfere with appliance adhesion or create skin problems.

Plain water is still the best cleaning agent for skin around the stoma. Do not continue to use therapeutic products after the problem has been solved. As an example: Kenalog spray and Mycostatin powder should not be used routinely when changing the pouch. These products are prescribed for particular skin problems. Kenalog is usually recommended for its anti-inflammatory effects and symptomatic relief of the discomfort associated with skin irritation. However, continued and prolonged use of Kenalog after the problem is resolved may lead to “thinning” of the outer layer of skin, thus making it more susceptible to irritations.

Mycostatin powder is useful for yeast infection. However, using Mycostatin after the infection clears serves no purpose. Seek advice.

See your physician or ET Nurse if you find yourself a victim of the syndrome. They can provide assistance in selecting the most appropriate and economical ostomy management system for your needs.

Those First Few Pouch Changes

by: An “old timer”

via: UOAA UPDATE 2/2008

Zinging through another change the other day, my mind wandered, as if often does when I am doing some routine chore. I’ve had an ileostomy for more than ten years and have had more than 600 pouches. I use the typical two-piece with a flexible wafer that sticks to my abdomen. What I got to thinking about was a problem I had with my very first few pouches—getting the old one off. To work right, the wafer has to stick really well; otherwise it will come loose and make a mess, usually at the worst time and place. The problem I had was that it hurt to pull off the used wafer. I still remember the first one I had to remove. It was only a few days after surgery, and the nurse came in to teach me about changing the pouch. After she left, I went to work, but every time I tugged at the wafer, it hurt like “h***”, just like pulling a giant Band-Aid off tender skin. It took a half-hour, “ouching” the whole time. I was extremely depressed when I finally got done. “How am I ever going to live with this?” I thought. Nowadays, removing the wafer takes about three seconds and is so routine there’s almost no sensation; in fact, my problem is keeping my mind on what I am doing. One detail that makes a big difference was a tip from my nurse, “instead of grabbing the wafer and pulling on it, you hold one edge in one hand and push the skin away with the other hand.” Believe me, it works! The reason I am writing this note is to reassure you if you are just starting out with an ostomy. Every pouch you change will get easier, and the pain of getting each off your tender skin keeps getting less and less. Stick with it—you will get past this too.

Sharing and Caring Partners & Spouses

via: Ostomy Association of Evansville, Indiana and 2002 UOA Annual Conference and Northeast Iowa Ostomy Chapter

Many times the roles we had been accustomed to playing in our relationships are reversed and altered drastically when there is an illness--especially a lengthy illness. Sometimes people want to return to the previous roles and sometimes not. It can be a real opportunity for stretching and growing. Sometimes the “patient” who was sick, doesn’t want to “burden” their partner with needs, feelings, concerns, even disagreements as the “patient” may feel so indebted already.

Don’t forget in relationships there is “you”, “me” and there is “we.” It has been explained by some relationship counselors that personality and autonomy and at the same time cultivate the other special relationship of “we”--which is not instead of “me” or you” but in addition to.

Realistic assessment of oneself is healthy, so is taking responsibility for your own feelings. Likewise, the partner has a responsibility to take care of herself or himself. This doesn’t mean protecting the other out of worry or fear of unsetting them. There is also a responsibility to ”we”. Spouses/partners need support too. Sometimes they can be forgotten while everyone is attending to the “sick” one. The partner may be waiting for you to give the cues on how you wish to be treated. Others can “pick up” on your attitude and this may influence theirs. If you have a positive attitude it will be difficult for your partner to have a negative one.

Ostomy Hints

via: The New Outlook (Ostomy Association of Greater Chicago) 3/2008

* Two-piece users . . . Make sure the pouch is snapped onto the flange on the skin barrier securely. Take that extra second to be sure.

* Once a year or so have your stoma and your pouching system checked by a WOC nurse.

* Do not use antibiotics for colds or the flu unless a doctor orders it. Antibiotics can change the proper balance of bacteria in the intestines and cause diarrhea. Antibiotics will also make you much more susceptible to fungal infections under your barrier as well as MRSA infections.

* Parsley is one of nature's best deodorants. Do not push it away on your plate. Have some.

* If you are having gas problems, do not take bismuth subcarbonate.

* Store pouching systems away from warm humid places. Melt out can render equipment ineffective. Most ostomy equipment does not have a specific shelf life, per se, if it is stored in the proper environment.

* Barriers and pouches leak for a variety of reasons. If yours does regularly, find out why. Do not settle for less than an excellent ostomy management system that provides you with confidence, security and comfort.

* If you have a hard time remembering the exact day you put on you system, write the day of the month you changed right on the pouch or barrier with a pen.

* Do not keep a lifetime supply of ostomy supplies on hand. Manufacturers are always making some improvement on the products they make. You want to be able to take advantage of these . . . so let your supplier keep inventory.

* Most people with ostomies should keep fats of all kinds to a minimum. Fats induce an increased flow of bile into the intestines and make body wastes liquid and harder to control. They also tend to produce gas.

* Do not spread paste on the entire back of the barrier; it will produce less than satisfactory results. Use paste only sparingly to fill uneven areas and around the stoma. Paste is a great filler if used correctly.

* After bathing or showering with the barrier off, hold a cold compress or something similar over the peristomal area for a few seconds to close the pores before putting on a new pouching system. Only put an adhesive barrier on dry that is bone-dry skin.

* After surgery, you were advised to chew-chew-chew and to drink-drink-drink. It still applies. Chew food thoroughly and never pass a water fountain without drinking.

* Do not try to set a world record for the longest time between changes and/or emptying. Therein lies the way to some of the most spectacular messes you have ever seen.

* Do not be so rigid about your stoma management program that the absence of one item throws you.

* Do not stay home. Travel and have fun. However, do not put all of your pouching systems in a suitcase that you check through the airline. Always bring some changes in your carry on luggage.

* Do not worry about accidents and problems that may never happen.

* Do not put limitations on yourself just because you have a stoma. You can do most anything anyone else can. An ostomy is seldom a good reason for not doing something, although it is a good excuse.

Depression and the New Ostomate

by: Mark Shaffer, from Northern Virginia The Pouch; via Chippewa Valley (WI) Rosebud Review; and North Central OK Ostomy Outlook

At a recent support group meeting, a subject came up that I found intriguing. One of the participants in the rap session stated that he found himself depressed and withdrawn even though it had been a year since his surgery. He wondered how long he could expect that feeling to last and, I think, whether it would go on for the rest of his life.

Some ostomates adjust almost immediately. These folks see an ostomy as a cure for an illness that threatened their lives or restricted their activities. Others take a few months, generally feeling better about the situation as soon as they master the fine art of pouch changing and maintenance. For many, ostomy surgery begins a process that appears to be, and is, very close to the grieving process, and like any grieving process, the amount of time needed to feel emotionally whole again will vary.

It took me almost two years following my surgery before I felt like I had regained my former personality and was ready to move on with my life. So there is no magic amount of time needed to adjust to your new ostomy. Allow yourself the time you need and realize that the feelings of depression and isolation will eventually go away. If the depression is severe, don’t be afraid to seek professional help.

Emotional Issues of Ostomy Surgery

by: Julie Maloy, CWOCN ,

via: The New Outlook (Ostomy Association of Greater Chicago) March, 2008

Ostomy surgery may cause a threat to one’s self-esteem and a readjustment of one’s body image. Self-esteem is based on how each person accepts and values him/herself.

Fears have a negative affect on self-esteem. Some of the common fears that one who has had an ostomy may experience first after surgery are fear of rejection, leakage, odor embarrassment and a decrease in feelings of personal attractiveness. Not only can these fears lower one’s self-esteem, they can create a barrier in an intimate relationship.

Successfully pouch fitting; changing and caring for a pouching system independently; open and honest communications, are the first steps necessary for restoring one’s self-esteem and returning to the previously held roles in a relationship.

There are several phases in rehabilitation from ostomy surgery. The meaning of your own personal medical diagnosis may cause an emotional impact, as well as the adapting and adjusting to having an ostomy. In the first few weeks after surgery, energy is exerted toward recovery and toward the task of mastering ostomy care. Independence, when possible, has a positive effect on self-esteem. The need to wear a pouch may cause anxiety. To minimize ostomy anxiety, a pouch that is unobtrusive, odor-proof and secure is essential.

Develop a routine of changing the pouching system before the possibility of a leak occurs. Check the skin barrier when you change for signs of wearing or undermining, such as staining under the tape or discoloration from the stoma to the edge of the pouch. Keep the tail of the pouch clean. Individual moist towelettes carried in a pocket or purse are handy to clean the pouch tail after emptying.

As one masters the task of stoma care, it is not unusual to discover that there may be a hypersensitivity to the reaction of others. Any behavior or reactions that are interpreted as negative can have an effect on interpersonal relationships, self-esteem, self-confidence and the physical competence of the person.

The person with an ostomy who can be independent yet allows the spouse to stay in a care- giver role is fostering an image of being disabled and not promoting the return of the previous sexual relationship. Good personal hygiene will help decrease anxiety and promote confidence, particularly during intimate times. Pouch covers that are plain, lace, pastels or prints are available for those who would like to cover the pouch. Taping the body of the pouch in place will help prevent pouch movement during sexual activity. A common fear of the spouse is one of hurting the partner or the stoma. Reassurance will dispel fears. Experiment with positions that will not rub or irritate the stoma. During recovery from ostomy surgery, holding, touching, caressing and kissing are all-important methods of expressing affection that should not be forgotten.

The readjustment period continues for several months after surgery as each person reestablishes a suitable lifestyle. The supportive network of friends, family and health care team is important; however, the overall adjustment is ultimately the responsibility of the person with an ostomy. Patience is necessary with oneself as the process unfolds; however, if a particular hurdle seems very large, seek help to put things in the proper perspective.

How to Say, “I Have an Ostomy”

forwarded by: ReRoute, the Evansville Ostomy Association,

via: The New Outlook, OAGC, Park Ridge, Il

In this world of technological advances, there are all kinds of people clamoring for information about you. Here are some questions you should ask yourself when giving out personal information. “How will I benefit from certain persons having certain information?” “How will the person asking the questions benefit from my answers?”

Thinking back to those critical days of adjustment just after your ostomy surgery, you may only have wanted people around you that you trusted and loved. At that time, you may have needed the support of a spouse, friend or children. In order for those people to support you, they needed to know about your ostomy surgery. By sharing the information you were helped through what for some was a very difficult time.

Once you were home, friends and neighbors started to call and then to visit when you felt up to it. The question arose as to “What do I tell them about my surgery?” Probably, you thought about each person and his or her relationship with you—the closeness you felt for that person and his or her relationship with you—and maybe, the sincerity of that person’s concern for you. After considering these factors, you may have made a decision to tell the person about your ostomy. Based upon the reaction to your story, you made another decision—whether to tell about your ostomy to those who inquired about your health.

As your health progressed and you began to return to work, the question arose again. “Should I tell my employer about my ostomy?” Here again a couple of questions needed to be asked. “Do I need support from my employer because of my ostomy?” “How does my employer knowing about my situation help me?” This becomes situational. For example, if someone works an assembly line and must take prescheduled breaks, and he/she is still adjusting to emptying the pouch, he/she may or may not need a different schedule for breaks than those enforced. The employer needs to know that a person with an ostomy is not just breaking the rules but has a real need.

Whether to tell someone you have an ostomy becomes a matter of who has a right to know, and how you will benefit from him/her knowing. To tell someone you have an ostomy becomes clearer when the benefits are weighed. Simply explain that you had some surgery for whatever reason you had your surgery, and it necessitated having an alternate route made for emptying either your bowels or bladder.

By having had this surgery, you were given the chance to increase the length and quality of your life. Share with the person whom you have decided has a right to know about your surgery, using pamphlets and brochures available from your local ostomy support group and other sources. Educate those persons you believe have a stake in your well-being.

A New Idea

by: Renard Narcaroti

via: The New Outlook (Ostomy Association of Greater Chicago, Park Ridge, Il)

It will soon be 10 years since my surgery, and I could not have imaged at that time that the best part of my life was yet to come. When my gastro doctor first told me that surgery to remove my diseased colon might be necessary for me to live, I did some investigation on the procedure.

All the literature and articles mentioned the word “ileostomy”. (There was also the opportunity for me to have a j-pouch, but at that time, the complication rate was much higher than it is today.) Sober terms described a hideous procedure, which people avoided even when it cost them their lives. It all seemed so awful . . . a surgery that seemed to make one an invalid that must walk delicately; have a restricted diet—essentially with the ability to only eat baby food; leak stools and is smelly; wear clothes that emphasizes a huge stoma and pouching system, etc. Add to this that the information always stated that people had serious psychological issues adjusting to this major body change. Who would choose to go through this?

I had little choice except to have the surgery, since without it, I would die, and a colectomy is the cure for ulcerative colitis (uc). Oh well. I was resigned to living a quiet life with all the excitement of milk toast in order to have a life free of the pain and humiliation of uc that I endured ever increasingly over most of my life. Of course, there was the added benefit of being drug free after surgery. Once when I went to my pharmacy to buy my monthly supply of maintenance drugs, my pharmacist laughed after filling the order and asked me if I wanted help carrying my medicines to the car. Nevertheless, there was always the nebulas issue of new unforeseen complications that would have me on new drugs for all the unknown health issues the surgery might create.

In the year before my surgery, I would see one doctor or another once or twice a month at first, and then once or twice a week as my disease progressed, excluding hospital visits and all the degrading tests uc patients must endure. One of the benefits written about ileostomy surgery is that it has a low complication rate. Of course, I did not know what that meant and still feared it would mean regular visits to the hospital for some painful medical problem developing from this unnatural surgery. This brief review of my condition before surgery probably brings up feelings that accurately reflect those of many of my fellow uc patients.

My fears and predictions before surgery did not correctly represent the actual events that ensued. That is . . . life became so wonderful again! The day I came home from the hospital, nine days after a successful surgery, I took the dog for a short walk with complete confidence that I could not have any emergencies where I needed to run to the toilet due to uc. All the pain associated with a sick colon was gone—as well as the many disease side effects like anemia—this is a very good thing and for the first time that I could remember, I was free from the toilet. Unfortunately, the massive quantities of drug still were being washed out of my system and drug withdrawal symptoms lasted almost six months.

Now the purpose of this article is not to discuss my medical history, but to correct the misconceptions about ileostomy surgery. This life saving surgery not only conserved my life, but also provided a new and better one that I could not have even imagined before surgery. I had no serious physical problems servicing my stoma; well maybe one . . . my skin around it itched. I never did understand the psychological problems the information said one must endure. I only had great benefits. How wonderful it is to walk the courses at Cog Hill playing 18 holes of golf and never have an urgent need to run to the toilet. Believe me, many of the players out there are either constipated, holding in a big stool or running to fill up a toilet after a hot dog and beer. Not me! Never again do I need to worry about having my bowels in an uproar when I am experiencing a little anxiety; e.g., just before I walk in front of my class at the beginning of a semester at the college where I am a math professor.

The word “ileostomy” is still fearful to me when I read it. The connotation of it has so negatively developed over generations that it always might be thought of that way. However, when I step back and reflect upon the actual truth of living with one, I have a plethora of positive feelings. No sickness or pain; a strong healthy body; a high red blood count—a major issue for males; and the freedom that comes with these results. I now have the opportunity to live life to the fullest.

I am guessing that you might be saying to yourself that this is difficult to believe. How is it possible to live better without a behind than with one? It turns out, that I did not use my behind for all that much—being a heterosexual male—and the thing I did use it for I am better off without. I think if most people reflect on their behinds that they would agree that it is more of a bodily function to service than a recreational part to enjoy, the absence of which is relatively small in the whole scheme of things.

Disclaimer: This is not to say that having an ileostomy is better than original equipment manufacturing. A perfectly health colon and digestive system is better than an ileostomy. My guess is that this perfection occurs in about five to ten percent of all adults at age 50, the time of my ileostomy.

This does not mean those of us with ileostomies can just take our new life for granted. We must become experts at ostomy and peristomal skin care, pouching techniques and emergency medical care; e.g., managing diarrhea, dehydration and blockages. We now must chew our food and never overeat, which is a good thing even for people with colons. Our hygiene must be superb; we must never exhibit anything except a good example to others. Most importantly, we must never use our ileostomy as a reason to why we cannot do or achieve something. An ileostomy may be an excuse, but it is never a reason.

After attending hundreds of sessions at the Ostomy Association of Chicago, UOA conventions, CCFA symposiums and the like, touching on every ostomy subject over these years, I have found that most of the issues talked about keep repeating themselves as if there is no resolution to most of these. Issues that were of concern many years ago, like ostomy odor, just do not apply any longer due to the research and development of high quality odor proof ostomy products. We have hundreds of articles written by excellent authors on our Internet site at: http://www.uoachicago.org/ that describe having an ileostomy from multiple viewpoints. Few have legitimate reasons for disliking one. I guess that there are people out there that do not like their behinds either.

For me, adjusting to this ileostomy business has been like someone adjusting to suddenly being rich. All the new things I can do are just marvelous. However, like everything else in life, all the good that comes with an ileostomy must be utilized from the correct perspective. We are all humans subject to the weaknesses of our species . . . we have the free will choosing to find good in our new situation or turning to the dark side and using this gift of an ileostomy for sadness and self-pity. I choose the good. I hope that you do too.

Drug Therapy For the Ostomate

via: Inside Out (Winnipeg Ostomy Association), March/April, 2008; Re-Route On-Line, Evansville, IN (1/2008)

The most well-adjusted ostomate can run into trouble when he or she starts taking medication. The potential of side effects or adverse reaction increases as the number of medications the patient is taking goes up. Compounding the risk is that consumers today are turning to over-the-counter medication and are prescribing for themselves to offset rocketing health-care costs.

A few basic principals of drug use are, therefore, important to keep in mind. A drug can’t do any good unless it gets to its target organ. This simple idea is all that’s behind the concept of bio-availability. In almost every case, a drug must be absorbed into the systemic circulation before it can exert a therapeutic effect. Since drugs are absorbed primarily through the intestines, ostomates can be at a particular disadvantage.

Many factors influence the absorption of drugs. These facts include the chemical nature of the nature, the dosage from in which it is introduced into the system, and the condition of the patient who is taking the drug. Iron for instance, and vitamin B12 are absorbed only in the upper ileum. While the chemical nature of most drugs allows absorption along a significant length of the intestinal tract, the shorter the functional intestine, the less will be absorbed. Only a few drugs, such as alcohol, can be absorbed to any great extent through the stomach. Another chemical factor involved in bio-availability is the intrinsic solubility of the drug. Some drugs are rather insoluble in the digestive juices and absorption into the bloodstream will vary greatly, even in patients with an intact bowel.

Clearly, a patient with a shortened ileum is at risk for mal-absorption of any poorly absorbed drugs. The dosage form, too, is a major factor in bio-availability. As a general rule, the smaller the particle size provided in the GI tract, the easier it is absorbed. True solutions have the best bio-availability by the oral route and suspensions are almost as good. Chewable tablets have a pretty good record if they are chewed well; in most cases they are better than capsules or compressed tablets.

Ostomates who have had a significant portion of their intestine removed may achieve better absorption by emptying the contests of a capsule into applesauce, or crushing a compressed tablet and adding the powder to food. A word of caution though - not all tablets can be safely be crushed, and not all capsules should be emptied. Generally speaking, timed release tablets should not be crushed, nor should time released capsules be emptied. The result could be 12 to 24 hours worth of medication being released all at once. Certain drugs can react chemically with foods.

Tetracycline is notorious for combining with heavy metals and with ions such as calcium, which is present in milk, yogurt, ice cream and other dairy products. Enterec-coated tablets should never be crushed. The reason those tablets are coated is to prevent acid degration in the stomach or to protect the musosa from irritation.

Enterec-coated tablets are a poor choice for ostomates. Entire tablets have been recovered intact in an ostomy bag. A patient’s diet can affect the drug absorption too, either by absorption of the medication onto the food, chemical interaction, or by delaying gastric emptying time. Since many drugs are affected by acid, prolonged exposure to stomach acid may decompose the medication. Physicians, pharmacists and especially enterostomal therapists have an important role in educating ostomy patients so they’ll know what to expect and avoid in drug therapy. Ostomates owe it to themselves to be informed and alert, to minimize risks and to ask when there remains but the slightest doubt.

A Word from the Editor

Ostomy Surveys:

Periodically we receive requests for information from companies who perform survey’s relating to ostomy equipment, products and other ostomy related subjects. These requests to participate in a survey comes via the UOAA and sometimes GLO is contacted directly. Sometimes, but not always, the company offers to pay a fee for participation.

Participation is usually done by email or telephone.

If you would like to be considered for future survey’s, please email me and let me know. Your reply should include an affirmative statement that you wish to be considered for future surveys. Also, it will be necessary to know what type of ostomy you have and the date of your original survey.

Your email reply should be sent to glocontact1@aol.com or thadbear@sbcglobal.net

Policy:

Do not follow any advice listed in this newsletter without first consulting your physician or the author of the article.

GLO does not endorse any product or service. We offer all information for our readers’ benefit to use as they see fit.

GLO welcomes articles submitted by our members. We would like to hear from you and find out what led up to your ostomy surgery, how you felt about it and adjusted with it afterwards. You don’t have to worry about writing the “perfect” story for the newsletter. GLO can edit your submission and will submit it to you for approval before it is printed.

CONNECTIONS and RESOURCES

GLOCONTACT, the newsletter for the gay/lesbian ostomate is published by the GLO Network an independent network

The GLO Network email: glocontact1@aol.com

The GLO Network website: http://www.glo-uoaa.org

GLO Network Board Members:

Fred Shulak, GLO Network Chairperson: thadbear@sbcglobal.net

Eric L Floyd, Treasurer and Previous Chairperson: efloyd8264@aol.com

Bill Etnyre: bnyre@msn.com

Mark Nowak: macnak@juno.com

Tom Beem, Webmaster: tmbeem@cox.net

Frank Mazzo, Membership: frankmazzo@gmail.com

The above names are listed as a ready resource of the GLO Network to be used by individuals seeking information, chapters looking for a trained visitor or for anyone wishing to expand their knowledge of the Gay or Lesbian ostomate.

Additional Resources

United Ostomy Associations of America: http://www.uoaa.org

Gay and Lesbian Medical Association: http://www.glma.org

WebMD: http://www.webMD.org

Mautner Project for Lesbians with Cancer: http://www.mautnerproject.org

Centers for Disease Control: http://www.CDC.gov

United Ostomy Association (Canada): http://www.ostomycanada.ca

International Ostomy Association (IOA): http://www.ostomyinternational.org

Menweb: http://www.menweb.org

Crohn’s Disease Resource Center: http://www.healingwell.com/ibd/

Quality Life Association - for Continent Ileostomates: http://www.qla-ostomy.org/

WOCN Referral Database - Find an ET: http://www.wocncenter.com/public/member_directory.cfm

Healthopedia Colostomy Information: http://www.healthopedia.com/colostomy

Healthopedia Ileostomy Information: http://www.healthopedia.com/ileostomy

Ostomy Community Connection Center: http://www.c3life.com/ostomy/

Chat Rooms, Meeting Places and Message Boards

Gay Ostomates (United Kingdom): http://www.gayostomates.org

The J-Pouch Group: http://www.j-pouch.org/

The Pull-Thru Network: http://www.pullthrunetwork.org/

UOAA Discussion Boards : http://www.uoaa.org/forum/index.php

Ostomyland: http://ostomyland.com/mainsite/

Yahoo Ostomy Support Group: http://groups.yahoo.com/group/ostomatessupport/

Autoimmunity - the Hidden Link (British): http://autoimmunity.co.uk/chat/ostomylandchat.html

Shaz’s Ostomy Pages*: http://st80.startlogic.com/~ostomate/cgi-bin/yabb2/YaBB.pl

Yahoo UK Ostomy Support Group: http://health.groups.yahoo.com/group/ukostomysupport/

Yahoo Ostomates Meeting Place Group: http://groups.yahoo.com/group/Ostomatemeetingplace/

Yahoo Stoma Central International Group: http://health.groups.yahoo.com/group/stomacentralint/

Yahoo UK Stoma Club Group: http://health.groups.yahoo.com/group/ukstomaclub/

Newsletters

Jacksonville, FL: http://www.ostomymcp.com/chapter/Newsletter/page1.html

Evansville, IN: http://www.ostomy.evansville.net/menunews.htm

North Central Oklahoma, OK: http://www.ostomyok.org/newsletter/

Vancover, British Columbia: http://www.vcn.bc.ca/ostomyvr/highlife.htm

Winnipeg, Manitoba: http://www.ostomy-winnipeg.ca/woain_ot.html

Cleveland Clinic - Pouch-O-Gram: http://cms.clevelandclinic.org/digestivedisease/body.cfm?id=79

Please notify us if...

* you have moved;

* you have a new E-Mail address:

* your area code or telephone number has changed; or

* you want to volunteer

A Final Note From the Editor

The Phoenix Magazine:

Having had an ostomy for many years I find that some of the most valuable information comes from newsletters such as this one as well as The Phoenix Magazine...the official publication of the UOAA. In order to avail yourself of the best and most current information possible, it is to your advantage to subscribe to the Phoenix. Subscriptions to the Phoenix provide the UOAA with their primary source of on-going revenue. By subscribing not only will you will be providing yourself with the most current information available, but also helping to assure that the UOAA is there for you on a long-term basis.

You can subscribe simply by issuing your check to The Phoenix Magazine in the amount of $25.00 and mailing it to P. O. Box 3605, Mission Viejo, CA 92690. Credit card orders will be accepted online at: http://www.uoaa.org/Phoenix.shtml.