Editor's note: This series began on the Internet, in the alt.support.ostomy and alt.support.crohns-colitis newsgroups. Barbara Skoglund rewrote her newsgroup postings for the Winnipeg Ostomy Association's newsletter Inside Out, where this first installment appeared in their Nov/Dec 1998 issue. Added note: Since we originally posted this article in Jan 1999, Ms. Skoglund's complete set of myths has been posted on the North Suburban Chicago chapter site.
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 anastomosis when he couldn't make me a J-pouch. I lived 3 years of hell with that "straight shot" and had an ileostomy installed in December 1996. It was the best Christmas gift I ever gave myself!
I had many 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 the facts and fiction of ostomy life.
Modern ostomy appliances are made of lightweight 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 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 those old time appliances. Thank goodness for modern technology!
While the shop-a-holic ostomates 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 one change in my attire as a result of my 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 these 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'm sure every 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 muumuus 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!
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 one and two) lonely and friendless.
You'd think I'd still harbor this myth considering that my first fiancÚ 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 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 really what a potential mate is 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.