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 anostomosis when he couldn’t make me a J-pouch. I lived three years of hell with that “straight shot” and had an ileostomy installed in December, 1996. It was the best Christmas I ever gave myself!
I had misconceptions about living with an ostomy and I frequently encounter others with those same misconceptions. After one person too many told me that it would be better to be dead than to live like me, I decided to start a series of short articles for the Internet newsgroups alt.support.ostomy and alt.support.crohns-colitis covering facts and fiction of ostomy life.
- Myth #1 - People with Ostomies Smell Bad Modern ostomy appliances are made of lightweight odor-proof materials. No one has ever talked up to me, sniffed, and said, “Boy, you smell terrible. You must have and ostomy I spent the first year of living with an ostomy thinking everyone could smell me. Every time we drove past one of the many Minnesota cow pastures I was sure it was me -it wasn’t. Some ostomates worry about the smell when they empty. 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 handle 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!
- Myth #2 - New Clothes Optional While the shop-aholics among 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 on change in my attire as a result of my ileostomy. I used to wear French-cut undies and now wear briefs. It’s much 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. What about spandex, skin-tight leather, and bikinis? None of these were in my wardrobe to begin with. But I do know a young woman from alt.support. ostomy who still wears a bikini.
- Myth #3 - Someone to Love A couple of times during my single days I placed personal ads as a way to find potential mates. Before I’d write my ad I’d 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. NO WHERE on that list did it mention “my partner must not have an ostomy.” But I used to think that no one out there would be interested in me if I had an ostomy I was convinced that ostomates sat home, stinking in baggy clothes (see myths 1 & 2), lonely and friendless.
You’d thing I’d still harbor this myth considering my first fiancée “took a walk” when I had my temporary ileostomy while my ileoanal anastomosis was healing. But it was pretty clear that we didn’t split over how I went to the bathroom. We split because we weren’t right for each other. I’ve since found my soul mate and life partner and he couldn’t care less about how I go to the bathroom. What he cares about is that I’m 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’ve found is that those who don’t date are too afraid to get out there and try. And yes, I wouldn’t be surprised if an ostomy limited someone’s casual exploits. But, if you are 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