Accepting a new – but in some ways, better – normal

By Rasheed Clarke

If you’re driving on Highway 400 north of Toronto, you can see it off in the distance. Streaks of turquoise twist and arc high above the subdivisions and shopping plazas that surround it. As you get closer, you can hear the screams it induces. It is Leviathan. Housed within Canada’s Wonderland, it is the tallest, longest, and fastest rollercoaster in the country. And if you thought an ostomy bag was going to stop Eric Polsinelli from riding it, you’d be sorely mistaken.

His appliance fixed firmly over his stoma, and his body firmly strapped into his seat, Eric flew down from Leviathan’s peak, plunging 306 feet at an 80 degree angle and reaching a speed of 148km/h during his three and a half minute ride.

Then he rode it again.

And again.

And Again.

And another 17 times. In one day.

Eric is proof that life with an ostomy need not be an encumbered one. The 36-year-old from Oshawa has a wife, two kids, a love of the outdoors, an appetite for thrill rides, and a permanent stoma. He’ll be the first person to tell you that an ostomy does come with its own set of challenges, but he’s discovered that what you learn from the hard moments can help you find more amazing ones.

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In 2007, Eric felt discomfort around his bum. Thinking it was hemorrhoids, he went to see his family doctor. After an exam, his doctor noticed the start of abscess, prescribed antibiotics, and scheduled a colonoscopy. That colonoscopy revealed Crohn’s disease.

“What disease?” Eric recalls wondering at the time of his diagnosis. “I’d never heard of Crohn’s before and I was asked if I had any trouble going to the bathroom or had abdominal pain. I shook my head, as I didn’t have anything like that – yet.”

Despite exploring a number of treatment options, Eric’s condition worsened. In the summer of 2010, he could barely walk because of the pain in his joints, could barely speak because of the sores in his mouth, and could barely leave the house because of the urgent, bloody bowel movements that came 20 times a day. Standing at 5’10’’ but weighing only 108 lbs., Eric was frail and frustrated.

“The talk of having an ostomy was proposed during a clinical trial. My gastroenterologist, who was leading the trial, talked to me towards the end of the trial after all these treatments weren’t working, and he said I might need a temporary ostomy to give my bowels a chance to rest,” Eric says.

But before a temporary ostomy could become a reality, another colonoscopy revealed further deterioration of Eric’s rectum and colon. He was referred to a surgeon to discuss a permanent ostomy.

“My initial reaction to needing an ostomy was shock and disappointment, but that’s mainly because I just didn’t know what the hell it meant. Like, what do you mean I’m going to have a bag? Does that mean I’m going to be limited in what I can do? Is this just going to cause more problems? That’s what I thought because I had no idea.”

Between the consultation with his surgeon and the operation date, Eric scoured the internet for information on ostomies, and stories from people living with them. 

“I wanted to find out what their lives were like. Were they bedridden and managing their appliance all day? Or were they active? What were they doing? That’s when I found a lot of people who were living well with their ostomies. They were happy, they were doing things outdoors. They were very inspirational to me. That’s what encouraged me to start my blog. It was that shift of perspective that they gave me, I wanted to offer that to other people too.”

Eric underwent surgery to have his colon removed in August 2013, and had a second operation three months later to remove his rectum. As he recovered, he began writing his blog, Vegan Ostomy, to document his new life as an ostomate.
 
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From the outset, Eric was hands-on with his ostomy. He insisted on changing his ostomy appliance by himself, albeit under the watchful eye of his nurse who could spot any potential problems with his technique. In taking that hands-on approach, Eric felt empowered, and that his new circumstances were not beyond his control.

In Vegan Ostomy, Eric wrote about his experiences with vegan-friendly food, but he soon came to realize that there were people of all sorts looking for information and advice about ostomies. So he took it upon himself to offer insight into the day-to-day details of living with an ostomy.

In his blog, Eric doesn’t shy away from talking about the difficulties than can arise from an ostomy.

“Believe me I’ve had problems,” he says. “I’ve had leaks, I’ve had blowouts, I’ve had times when I’ve woken up just covered in a mess. I’ve had those situations. My experience is not perfect. But I try to learn as much as I can from those experiences, and turn them into positives. If I have a leak, I try to come down to the basics. Why did this happen? How can I prevent this from happening? And I try to learn so I can avoid it in the future.”

It’s those negative experiences than can sometimes overshadow the positives of having an ostomy, which may lead to skewed understanding about ostomies.

“The biggest misconception from what I can see is that an ostomy is this dirty thing. That you’re going to smell, that you’re constantly going to have leaks,” says Eric. “I had the same misconceptions early on too because I didn’t know how the ostomy appliance worked. I didn’t know it was going to contain the odour, or that I could shower and it wouldn’t just fall off. I can go about my day normally, and in fact I do more now than I did before my surgery.”

For anyone new to life with an ostomy, and for experienced ostomates who may be going through a hard time, Eric’s advice is to seek out information, understand why issues may be occurring, and talk to others who may hold the solutions. And through those issues, it’s important to seek security in your sense of self.

“Start accepting the new normal, because you didn’t change – just the way you go to the bathroom changed.”

For more information on living with ostomy, download our brochure, "Better than Ever: Living Life with an Ostomy".

  • Canada has among the highest incidence rates of Crohn's and colitis in the world.
  • 1 in 150 Canadians lives with Crohn’s or colitis.
  • Families new to Canada are developing these diseases for the first time.
  • Incidence of Crohn’s in Canadian kids under 10 has doubled since 1995.
  • People are most commonly diagnosed before age 30.

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