Editor's note: Here are more of Barbara Skoglund's "Myths" which began in the Internet newsgroups alt.support.ostomy and alt.support.crohns-colitis. We carried previous installments in our January 1999 and February 1999 newsletters. Added note: Since we originally posted this article in April 1999, Ms. Skoglund's complete set of myths has been posted on the North Suburban Chicago chapter site.
Whew, my legs sure hurt. I just spent the day at the Minnesota Renaissance Festival - the largest and most popular of its kind in the world. What fun! We grazed on tasteless, overpriced festival food. I found a beautiful Celtic necklace and bought 3 pairs of earrings. We saw jugglers, magicians, comedians, dancers, jousters, jesters, and much more. My favorite were the Scottish dancers.
Oh! I suspect you are wondering what my Sunday activities have to do with Ostomy Myth Five. Well - before my ostomy I wouldn't have dared to go to such an event. I avoided any activity where bathroom availability was unknown - or known to be a problem. I just couldn't risk it. I'll never forget the time I went to the Wisconsin State Fair when I was in college. I went with my aunt and spent much of the day worrying - waiting for - expecting trouble. Trouble hit in the dairy building. I rushed into the women's room only to be confronted by the long, long, long line to the bathroom. Frankly, I didn't make it. By the time I got into the stall I had a mess. So there I sat crying, trying to clean myself, my bowels still pouring out. Then the pounding on the door started. "Hurry up. Don't you know there's a line out here." There I sat, my eyes filled with tears, desperately trying to deal with a horrid situation and this woman was pounding on the door, yelling at me. Only one thought pounded in my head - "I wish I were dead, I wish I were dead, I wish I were dead."
Well, I don't have experiences like that anymore. I used to think that an ostomy would limit my life - I've already shared my misconceptions about love and sex. Well the opposite is true. I spent so many years tied to the bathroom. In the last 21 months I've got to live life to the fullest for the first time. I can do ANYTHING I want to now.
There are many things ostomates enjoy doing - swimming, sitting in a hot tub, sports. There have been professional football and golf players among our ranks. Let's not forget the actress and political leaders among us. One of the active members of alt.support.ostomy participates in martial arts and another is an adventure athlete. Believe it or not - there is even a stripper in Florida with an ostomy.
Those of us who spent years ill find living with an ostomy to be a joy compared to what we endured as a result of our disease. Limits? HA! My ostomy opened that bathroom door and set me free to do anything I wanted to do.
Whew! Is life hectic. My job is busy, busy, busy. My grad school class
starts next week and I need to somehow get over to the U to buy my books.
(Their concept of evening hours for adult students is staying open to
"What does this have to do with ostomy life?" you ask. My life is busy and hectic. I'm involved in a lot of things that take up time. Dealing with my ostomy isn't one of them. I empty my appliance 5-7 times a day - usually when I urinate. I tend to empty more often than necessary. According to my ET nurse as time goes by I'll be less self conscious and empty less often. I spend far less time in the bathroom than I did when I had ulcerative colitis or when I had a straight ileoanal anastomosis. I change my appliance every 4-5 days. It takes me about 10 minutes. Because of my allergy situation I have to change my appliance more often than most. It also takes me a bit longer because of the system I use. Most folks use a much simpler appliance system than I do. The two times I tried to switch to a different appliance were the only two times I've ever had a leak - so I've decided to stick with what works for me.
The experiences of other ostomates will be a bit different. Many colostomates choose to take time to irrigate so they don't have to wear an appliance. Although most ostomates have a longer wear time than I do, some have to change their appliances more often. When I hear horror stories of ostomates who have to change their systems hourly or daily - the first thing I ask is "When did you last see an ET nurse for a proper fitting?" Their answer is always the same - "never" or "years ago." An experienced ET nurse can help an ostomate find a properly fitting appliance. My wear time is considered short at 4-5 days. If you are getting less than 3 days then see an ET nurse ASAP. Odds are you are not using a properly fitting appliance.
Managing an ostomy - emptying it and changing it - does not cut into my time. Actually since I spend so much less time in the bathroom and doubled over in pain - my ostomy has expanded my available free time.