6 Things Life With an Ostomy Isn't

Back in the dark ages of the 1990s my colon crumbled from ulcerative colitis. After several surgeries, I ended up with a permanent ileostomy. After people told me that it would be better to be dead than to live with an ostomy, I wrote a series of 20 ostomy myths for Crohn’s and Colitis UseNet groups on the burgeoning web. My myths have been frequently shared and copied over the last two decades.

Here is a 2018 update of what my condition isn’t.

1. Living with an ostomy isn’t stinky.

Modern technology replaced great grandma’s old rubber bag years ago. Some ostomates disagree, however I don’t think our stool isn’t any more toxic than other people’s — we just empty up front where our noses are. A good-fitting appliance helps prevent those leaks people are often worried about.

2. An ostomy isn’t an express ticket to lonesome town.

An ostomy doesn’t prevent you from having sex, finding love or having children. When I married in 1997 I wrote, “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.” We are still happily married and our daughter is a freshman in college.

3. Life with an ostomy doesn’t control your day or limit life.

After years of being tied to the bathroom, I am able to do so many things I couldn’t before. I still work full-time after all these years as a bag lady. Ostomates are athletes and firefighters, mothers and fathers, politicians, actors and even strippers.

4. Like most things in life, one size doesn’t fit all.

Ostomates come in all ages, shapes and sizes. There are different types of stomas, each with its own purposes and challenges (and many medical professionals don’t know the differences.) Some of us can eat anything we want and others discover some foods don’t agree with their new plumbing. Some of us wear the same clothes we always have, some wear baggy clothes and others proudly wear bikinis.

5. Dealing with an ostomy isn’t as gross or yucky as you may think.

How is wiping the tail of my pouch any different than wiping my bottom? At least I can see what I’m doing now. Ostomates may carry a bag of urine or feces. Non-ostomates just keep theirs inside. To paraphrase a wonderfully funny article from the Winnipeg Ostomy Association – So stomas aren’t real pretty. Well your anus doesn’t look like Miss America either.

6. Ending up with a permanent ostomy isn’t inevitable.

Many folks avoid necessary medical treatment out of fear of an ostomy. This is particularly a problem with colon cancer symptoms. This is one of the leading killers in the U.S. even though it is one of the most easily treated and curable cancers. Most colon cancer survivors don’t have an ostomy.

My point in debunking these myths is that if – worst case scenario – you end up with an ostomy, it isn’t the end of the world. It is the beginning of health. If you end up joining our little club, it’s likely ostomy life isn’t the way you imagine it to be. We are everywhere and you cannot figure out who we are unless we tell you or wear a bikini!

Getty image by Tuutikka.

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