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Myths busted and lessons learned: John Vennavally-Rao on his surgery to reverse his ostomy

Being prepped this week for an ostomy reversal surgery at Toronto Western Hospital
(Handout photo/John Vennavally-Rao)
Being prepped this week for an ostomy reversal surgery at Toronto Western Hospital (Handout photo/John Vennavally-Rao)
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As a longtime fan of Larry David, I love his distinct mix of awkwardness, unfiltered honesty, and wit. But a line he delivered in an episode of Curb Your Enthusiasm this year made me pause. In classic Larry style, he said, “Things could be worse. You could have a colostomy bag.â€

At the time, I had an ileostomy bag — a cousin to the colostomy. It was the necessary consequence of a potentially life-saving rectal cancer surgery in January. I thought, “Was the bag really the worst thing I could have?â€

  • John Vennavally-Rao on his double cancer diagnosis — and reason for hope

For the uninitiated, an ileostomy diverts digesting food through your small intestine to an opening, called a stoma, created on the abdomen. A colostomy has its opening farther down the digestive tract. The stool is collected in an odor-resistant pouch. Often they can be drained and emptied, much like a regular bathroom visit.

The reports 13,000 ostomy surgeries are performed in Canada every year. On average, that’s 35 a day. Some are temporary; others are permanent.

A friend who also has rectal cancer, wasn’t sure which she’d end up with. She was told the decision would be made mid-operation. The surgeon said if she woke up and the colostomy bag was on her right, it was temporary; on the left, permanent. She woke up, felt the bag on the left, and thought, “Well, I guess that’s that.â€

Like many patients she believes a bag is better than the alternative. But a recent study found the stigma around them is a common reason why colorectal cancer patients delay or even refuse operations, driving some to pursue less effective treatments.

When I learned I needed a temporary ostomy, I didn’t know what to think. So I Googled it. There was a picture of a shirtless guy with a bag strapped to his six-pack abs. He wanted to show how it was no big deal and nothing to hide. It seemed hard to imagine I could ever be so chill about it.

An example of an ostomy bag. They are produced by several manufacturers. (Handout photo/John Vennavally-Rao)

However, after living with one for eight months, I can confirm it was fine. The bag was invisible under most of my regular clothes. Though, on the occasion of my nephew’s university graduation, I wanted to dress up and tuck in a shirt, which proved to be more of a challenge. Still I managed to make it work.

Of course, ostomies don’t just help cancer patients. Among others are those with ulcerative colitis and Crohn’s disease.

When you have an ileostomy, you’re initially presented with a kilometre-long list of things you can’t eat. Goodbye, corn. Farewell, salad. And you have to chew your food — like really chew it.

Mishaps? They happen. It was mortifying when my bag suddenly burst open in a hospital bed. At the time, I was surrounded by visitors. But after all the other indignities I’d been through — catheter, anyone? — I got over it pretty fast.

What gave me a lot more confidence was the purchase of a stealth belt. It’s designed to keep the bag snug against the body, making activities like going to the gym a lot easier. Online, there are also plenty of people selling cheerful pouch covers. Some featured little spaceships, sports logos, and even one that read, “Sh*t happens.â€

Sometimes the bag even has its perks: I could avoid sitting on questionable public toilet seats.

During a cottage weekend with friends, the toilets stopped working when we lost power. But while the rest of the group fretted, I didn’t have to worry about it so much.

Enjoying a cottage weekend. (Handout photo/John Vennavally-Rao)

Talking about ostomies still feels taboo, and I even debated writing about it. But if the subject happened to come up, I found friends and family were mostly curious and had questions, but after a minute or two, moved on to other subjects.

Through this experience, my mom — who was a nurse in the U.K. — told me she’d helped patients with ostomies in the 1960s. It was a reminder that people have been living with them longer than I’ve been alive.

This week, I had surgery to reverse my ostomy. I’m grateful for what it did to extend my life. If you find yourself in a similar situation, don’t stress. As I would have told Larry David’s character, for what it can do, an ostomy is “pretty, pretty, pretty good.â€

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