Ostomy Uncovered

Learning to conquer the stigma of the ostomy.

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Uncover Ostomy || Courtesy of Uncover Ostomy Uncover Ostomy, Courtesy of Uncover OstomyAs a support group leader I often get calls about the details of the group’s activities, meeting times, and locations. But occasionally people just need someone to talk to, and sometimes they’re desperate.

I was once connected with a couple who was struggling with the prospect of a colectomy for their daughter. A colectomy is sometimes performed on Crohn’s and/or colitis patients to remove the colon when it is simply too inflamed for the rest of the body to remain healthy. It can be a cure for ulcerative colitis, but with Crohn’s patients it’s usually a life-saving stop gap. For some colitis cases, a reconstruction of the small intestine can allow anal re-attachment to retain relatively normal bowel evacuation. This is called a j-pouch operation and it’s a pair of surgeries spaced several months apart. During that time between surgeries, the patient will use an external ostomy bag to collect bowel waste. In some cases a j-pouch is not an option or is unsuccessful, and these patients keep the ostomy permanently. There are other kinds of ostomies as well, both temporary and permanent, including colostomy where a part of the colon is routed to an external reservoir, and ileostomy, involving the ileum, which is a part of the small intestine.

This young woman, sixteen or seventeen years old, had come down with a severe case of ulcerative colitis that her doctors could not find a way to control. None of the available medications were able to reduce the inflammation. Very quickly it became so severe that they advised removal of the colon. The family was bewildered, had hardly heard of colitis a week earlier, and they were struggling with the decision. I visited them in the hospital, brought some brochures and other information, and we talked about it.

In her case, it looked like the surgery was the only option left to save her life. Although many colitis patients make the decision for surgery in less dire circumstances—choosing to voluntarily trade the agony of living with the disease in exchange for a result filled with practical and social implications.

In talking with this young woman, she had plenty of concerns. One of the most pressing questions was how she would fit a prom dress over the ostomy bag. While it seems like an unexpected concern when facing a life-threatening situation, in a sense, it sums up a fundamental reservation shared by so many who find themselves in her shoes.

The perception of social stigma around an ostomy is certainly significant. But when I talk to people who have embraced their ostomy as a part of life, I see how people are living normal, happy lives anyway. And it’s the “anyway” that demonstrates how easy it is to slide into thinking it’s a problem or flaw to live with an ostomy.

Uncover Ostomy is an inspiring campaign aimed at that exact issue. It is an effort to redefine our instinctive views of post-ostomy life. It features a young woman who found herself in a similar situation to the one I just described. As a teenager she underwent a colectomy and is now venturing to change the image of living with an ostomy. She aspired to be an actor, and now models in an ad campaign. Uncover Ostomy is exactly what it sounds like… glamorous photos of this young woman, ostomy uncovered. The message to the patient is that you are, and will remain, the same beautiful person, before and after the surgery. The message for all of us is a step beyond where we instinctively think we need to go. The point is not to see through the ostomy, or to look past it. The point is to see it… and embrace it.

For more information on ostomies, visit:

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Tags: Advocacy (Making a Difference) , Family Matters , Treatments

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About the Author

Andrew Tubesing is an acclaimed advocate and humorist on the subject of inflammatory bowel disease.

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