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Let’s Change How People Look at Ostomies

Posted on November 1, 2013

“My heart is hurt right now. Yesterday on The View, Mario Cantone made a disgusting comment about his pants being so baggy it looked like he had a colostomy bag.”

This is a comment from a fellow ostomate and creates an opportunity to help change the public’s negative impression of those whose lives have been saved through surgery requiring an ostomy

Randy Henniger, Colon Cancer Alliance Patient Support Advocate and 27-year colon cancer survivor.

Randy Henniger, Colon Cancer Alliance Patient Support Advocate and 27-year colon cancer survivor.

There are nearly one million people living with ostomies in the US. They are living because they accepted a difficult treatment plan that included surgery requiring the removal of all (ileostomy) or part (colostomy) of their colons, or their bladder (urostomy).

I had to make that difficult decision at age 30 as part of treatment to defeat colon cancer. That was 27 years ago. My experience of living with an ostomy and the general public opinion of living with “the bag” are at opposite ends of the spectrum. I wear any type of clothing I wish; I am not restricted from any of the activities I enjoy; I don’t smell; I am a normal human being with some internal plumbing changes.

I value this opportunity to work to change the public’s view of us ostomates, mostly to help others facing this difficult decision for treatment of colon cancer and other bowel diseases like Ulcerative Colitis and Crohn’s Disease. If I had not made the decision to move ahead with treatment that required a permanent colostomy, I would not be alive today.

How many others are influenced by public opinion as reflected in Mario Cantone’s comment, and reject a treatment plan that includes an ostomy? I suspect it is in the hundreds of thousands each year. And how many of those die because they feel they would “rather die than have a bag”? Thousands, I believe, are dying because of this unfortunate and incorrect impression of life with an ostomy.

Let’s work together to change public opinion of what it means to “wear the bag.” Better the bag than the grave!

Other helpful information: 

Randy Henniger
27-Year Colon Cancer Survivor and Ostomate

Randy Henniger was 30 years old, married for just a few years and the father of two young boys when he was diagnosed with stage III colon cancer. He was told he had only a 30% chance of survival. One week after his diagnosis, he underwent surgery to remove the lower third of his colon and rectum along with a baseball-sized tumor that left him with a permanent colostomy. The surgery, radiation treatments and superior care he received saved his life. Today, 27 years later, Randy still celebrates every year as a blessing and an opportunity to spend more time with his wife and sons. 

One Response to “Let’s Change How People Look at Ostomies”

  1. elesa dillon says:

    Very well written Randy. I’m sad too that the comment was made by Mario. Being a rectal cancer survivor and having a temporary illeostomy for 9 months I can attest to all of what Randy has written.

    Randy was a huge inspiration to me during my time with “a bag” . He’s shown all of us colorectal patients and survivors that we can change public opinion about having an ostomy. I was never shy about it, I wanted people to know what I was going through. Since then, I’ve been the go to person to my friends, and my friends- friends about ostomy’s. It’s a good feeling ! Thanks to Randy he gave me the courage to embrace what I was going through.

    I had my reversal in March this year, and it’s going good, my pipes are normal yet, but I’m glad in a way I had the ostomy because it saved my life. I’m in remission and plan to stay that way !!!

    Thank you Randy for being a true inspiration to all of us who are still fighting the fight, those who have survived the fight, and those who have lost the fight.
    be well, elesa

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