Group breaking down the stigma of an ostomy
Stoma Stroll raises awareness about people living with an ostomy
They walk among us. Odds are, you know some of them; you just don’t realize who they are — because it’s not obvious.
People living with an ostomy are all around us — ranging in age from newborns to seniors. In Canada, it’s estimated there are 90,000 people living with an ostomy — ridding their body of stool or urine by collecting the waste in a removable pouch that’s emptied as necessary.
“An ostomy is the result of a surgical procedure that removes either the bladder or part of the bowel,” explained Susan Hunter, a former enterostomal therapy nurse who is a member of the Regina chapter of the Ostomy Canada Society. “People may have an ostomy because of cancer, inflammatory bowel disease (Crohn’s and colitis), congenital defects, trauma, gunshot wounds, stab wounds and many other reasons.”
Some people have an ostomy due to a palliative situation, to relieve an obstruction, she added. “But for the most part, having an ostomy is life saving ... Many people are free of pain and suffering as a result of the surgery.
“People who have an ostomy have full lives, are married, are parents and grandparents. They work in all types of careers and wear the same clothes as anyone else.”
Agnes Parisloff, president of the Regina chapter of the Ostomy Canada Society, speaks openly about her ostomy.
“It gave me my life back,” she said in a recent interview.
At age 24, Parisloff was diagnosed with Crohn’s disease. For 10 years, she suffered with severe diarrhea, bloating and cramping — not daring to venture far from a washroom. Then in 1980, at age 34, she had an ileostomy.
To move waste out of the body, an opening is made in the belly (abdominal wall) during surgery, and the end of the ileum (the lowest part of the small intestine) is brought through this opening to form a stoma.
Having an ostomy has changed the quality of Parisloff’s life dramatically, for the better.
“That was 36 years ago, and I haven’t looked back since,” she said with a smile. “I’ve been very fortunate.”
Without the ostomy, she would have died, Parisloff said matter-offactly. “I would have died within a few months; I was that sick.”
With it, she has led a full, productive, active life — going back to school, working, raising a family, and watching her grandchildren grow up.
“We are so blessed,” Parisloff said, praising the supportive care provided in southern Saskatchewan to people living with an ostomy.
“There are many people who will suffer through horrific disease and refuse surgery because they’re so afraid to have an ostomy,” Hunter said.
To help break down the stigmas often associated with an ostomy, and to raise money for ostomy society programs, a Stoma Stroll is slated for Saturday, which is Canada Ostomy Day. This is the fourth year the event is being held nationally, and the third year for the Regina Stoma Stroll. To register or donate online, go to www.stomastroll.ca.
When a patient is told they need an ostomy, “usually there’s fear. It’s fear of the unknown,” said Jane Wilmot, an enterostomal nurse with the Regina Qu’Appelle Health Regina. “Historically, a lot of the appliances — the pouching systems used — if you look back 40 to 50 years, weren’t good at keeping odours down, or comfort for patients, or reliability that there would not be leakage. So a lot of people will recollect a relative or friend who was housebound, or always had problems with odour.”
As a result, patients today often worry they’ll be an outcast, plagued with an unpleasant odour if they have an ostomy, Wilmot and Hunter said.
Fortunately, the products now used by people who have had ostomy surgeries have improved significantly over the years, Wilmot said. “The pouching systems available now are reliable. Odour shouldn’t be an issue. And if it is, we look at how we can resolve that.
“They’re small, compact, not visible under clothing, aesthetically pleasing.”
Ostomy care programs have improved, as well. Locally, they include everything from pre-op consultations with an enterostomal therapy nurse to ongoing postop support and education.
“It’s supportive care throughout the patient’s lifespan,” Hunter said.
“People don’t like to talk socially about poop and pee, but we all do it,” Wilmot said.
The purpose of the Stoma Stroll is to help raise public awareness and to support national programs designed to help people with an ostomy. For more information, visit the Regina chapter’s website at www.reginaostomy.ca.