OSTOMY SUPPORT GROUP OF BEAVER COUNTY

                                             How To Tell Someone You Have An Ostomy

   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 to know about the surgery. At that time, you may have needed the support of a spouse, friend, or children. In order for those people to give you the support you needed, it would have been necessary for them to have known as much as possible about your surgery, and what you were going through. By sharing this 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, no doubt, 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 even the sincerity of that person's concern for you. After considering these factors, you may have made the decision to tell the person about your ostomy. Based upon there action to your story, you made another decision - Whether to tell about your ostomy to others who inquired about your health. As your recuperation 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, e.g., if I work on an assembly line and must take prescheduled breaks, and I am still adjustingto emptying my pouch, I mayor may not need a different schedule for breaks than those set up by the company or union. My employer needs to know that I'm not just breaking the rules, but have a real need. Whether to tell someone you have an ostomy becomes a matter of who has the right to know, and how you will benefit from their knowing. Whetheror not to tell someone you have an ostomy becomes clearer when benefits are weighed. Simply explain that you hadsome surgery for whatever reason you had your surgery, and it necessitated having an alternate route made for emptying either your bowels or your bladder. By having had this surgery, you were given the chance to increase either thelength or the quality of your life. Share with the person whom you have decided has the right to know about your sur-gery, using pamphlets and brochures available from the United Ostomy Association and other sources. Educate thosepersons you believe have a vested interest in your well-being.

                                                                                                 Ostomy Myths

      I had ulcerative colitis for 14 years before I became so ill that my colon had to be removed. I was so afraid of having an ostomy that I postponed treatment and nearly died. Knowing my feelings about ostomies, my doctor performed a rarely done straight ileoanal anastimosis when he could not make me a J-pouch. I lived through three years of hell with that"straight shot" and had an ileostomy installed in December, 1996. It was the best Christmas gift I have ever given my-self! I had many misconceptions about living with an ostomy and I frequently encounter others with those same miscon-ceptions. After one person too many told me that it would be better to be dead than to live life like me, I decided to starta series of short articles for a couple of Internet newsgroups (alt. support. ostomy and alt.support.chrohns-colitis) covering the facts and fiction of ostomy life.

    Ostomy Myth #1: People With Ostomies Smell BadModern ostomy appliances are made of light-weight odor-proof materials. No one has ever walked up to me, sniffed,and said, "Boy, you smell terrible! You must have an ostomy!" I spent the first year of living with an ostomy thinkingeveryone could smell me. Every time we drove past one of the many Minnesota cow pastures, I was sure it (the smell)was me- It wasn't! Some ostomates worry about the smell when they empty their pouch. Our stool isn't any more toxic than other people's. We just empty up front, where our noses are. A touch of the flush handles and away goes the smell.The roots of this smelly myth probably stem from old-time appliances. Early ostomy supplies were made from non-odor-proof materials. Many ostomates had trouble controlling the odor from these old time appliances. Thank goodness for modern technology!

   Ostomy Myth #2: New Clothes Optional  - While the shop-a-holic ostomates amongst us (myself included) may harbor thoughts of having a perfect excuse for buying an entire new wardrobe, it's really not necessary. I have only had to make one change in my attire as the result ofmy ileostomy. I used to wear French-cut undies and now wear briefs. It's just more comfortable for me that way. There are some men whose stomas are poorly placed at the belt line. They frequently find suspenders easier to deal with than belts. If you have an experienced ET nurse who pays attention to such things, stomas at the belt line can be avoided.What about spandex, skin tight leather and bikinis? None of those items were in my wardrobe to begin with! But I do know a young woman from alt. support. ostomy who still wears a bikini; she just found a new style. I am sure ostomate has stories to tell about folks who stared and stared and still couldn't see our pouches through our clothing! So If you find yourself facing ostomy surgery, don't waste 'time worrying about wearing muu muus or overcoats. At the most, you may have to buy a new swimsuit or some new undies. Though feel free to be like me and use it as an excuse to buy more clothes!

  Ostomy Myth #3: Somebody To LoveA couple of times during my single days, I placed personal ads as a way to find potential mates. Before I would write myad, I would sit down and list all the qualities I was looking for in a mate. I wanted a partner who was smart and funny,someone who shared my interests, who shared my values, etc. Nowhere on that list did it mention "my partner must nothave an ostomy." But I used to think that no one out there would be interested in me if I had an ostomy. I was con-vinced that ostomates sat at home, stinking in baggy clothes (see myths #1 and #2), lonely and friendless. You'd think I would still harbor this myth considering my first fiance took a walk when I had my temporary ileostomy while my ileoanalanastimosis was healing. But it was pretty clear that we didn't split over how I went to the bathroom. We split becausewe weren't right for each other. I've since found my soul mate and life partner and he couldn't care less how I go to thebathroom! What he cares about, is that I am healthy! You see, he loves me, not my body or my bowel. But, but, but- Don't single ostomates have a hard time with dating? Some do and some don't. However, what I have found is that those who don't date are too afraid go get out there and have some fun. And yes, I wouldn't be surprised if an ostomy limited some-one's "casual exploits." But - If you're interested in finding a life partner who loves you, not your shell - then an ostomy won't stop you. If anything, it's a good test of what a potential mate is really interested in. I never think to myself, "Will you still need me when I'm 64?" I know my husband is with me for the long haul.