Sunday, July 31, 2011

Happy Ostomy Awareness Day!

Today, July 31, is Ostomy Awareness Day. I found this out through Jackie's blog. She is an earthy chick who has been through the wringer with MS and UC, requiring numerous surgeries.

Unfortunately, I'm sure you won't hear Ostomy Awareness Day advertised. In our society, having an ostomy is a taboo topic and highly stigmatized.

It's like how breast cancer used to be. No one wanted to talk about breasts, so breast cancer was a deep, dark secret for women for years. Thankfully, due to the hard work of many people, breast cancer now has more treatment options than any other cancer, and mortality rates are plummeting. We see pink ribbons everywhere. Breast cancer is publicized by the media and at football games and at the grocery store. It's amazing what raising awareness can do.

Lamentably, awareness for ostomies and IBD (Inflammatory Bowel Disorders) is still in the dark ages. Yeah, maybe ostomies are a little gross. No, they are not pretty. But diseases like IBD and colon and bladder cancer threaten the health, productivity, and well-being of millions of people. Many people with Crohn's and UC and cancers would greatly benefit from surgery to remove diseased bowel or bladder. For cancer patients, this is life saving. For those with IBD, it can restore the health we've lost and give us our lives back.

Sadly, people often shy away from these surgeries, because they are afraid of having an ostomy, whether temporarily or permanently. To these people, an ostomy is a worse fate than death or constant chronic pain and sickness.

I admit, I was once in this category. When my doctor first told me about J pouch surgery, he told me that some people choose to live with an ostomy rather than a J pouch. I looked him square in the eyes and said, "Well, that won't be me. We'll make the J pouch work, because I am NOT living with an ostomy forever." I never pictured myself with a permanent ostomy.

We need to raise more awareness about life with an ostomy. C'mom, people, having an ostomy is WAY better than the alternative. We need some vocal positive role models to show people that LIFE GOES ON after ostomy surgery... and it's usually much better than life was before surgery.

Is life with an ostomy different? Yes. Very different. I no longer have bloody diarrhea 15 times a day. Instead of running to the bathroom and having accidents, I can choose when to empty my bag. I no longer have constant stomach pain and cramps. I can attend events for hours and not need to sit near a bathroom. I am no longer anemic from blood loss. I have zero chance of ever getting colon cancer. ;) I don't smell like poop, and no matter what I wear, no one knows I have an ostomy unless I choose to tell them. I empty my bag whenever I feel like it, and I only have to change my bag out once a week, which takes me all of 5 minutes. I don't feel sorry for myself, and I don't feel different or ugly because of my ostomy. I feel better than I did with UC.

Here is a pic of me about to dive off a 5 meter platform (with Squirt, my ostomy, although I'm willing to bet you can't see him). I'm on the left, Claudia is on the right. There is really nothing you can't do with an ostomy. Rolf Benirschike, the NFL's 3rd most accurate place kicker ever, had an ostomy. There are ostomates who are firemen, mountain climbers, triathletes... you name it! Chances are, you know an ostomate... they just haven't told you about their ostomy.

More information on Ostomy Awareness Day.
Another site doing a great job of raising awareness and destroying myths about having an ostomy.

Hannah ;)

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