by Susan Toresdahl
(from Ostomy Canada Magazine – Winter 2012: Volume 20, Number 2)
To look at her you would never guess. She is a young, active mother of two, sharing her life with a caring husband and family members living in the Comox Valley. “It’s not a secret, I have always been very upfront about my ileostomy”, says Tonya. “Some people are curious about it, others just nod, and a few sort of pull back and act like it could be catching. I’m not the least bit embarrassed about it, after all, it saved my life, and I wouldn’t be alive without it.”
An ileostomy is one of three types of ostomies (colostomy, ileostomy and urostomy) resulting from surgery. During surgery a portion of the bowel is brought to the surface of the abdomen. This allows for normal bodily wastes to be expelled through a surgical opening (stoma) on the abdomen. People with ostomies wear an appliance to collect waste.
“I wasn’t always this optimistic about it”, says Tonya. “For a long time I fought the idea and even after the surgery I felt defeated. I was worried about how my husband would react and what the kids would say when they saw it. How would I live a normal life, so many questions ran through my head, it was frightening.”
Tonya has suffered from Crohn’s disease since she was eight years old although she was not diagnosed with such until she was 18 years old. Crohn’s is an autoimmune disease that most often attacks the intestine. “When I was a child I really didn’t know that tummy aches were unusual because I always seem to have one”, comments Tonya. “As a teenager I was extremely sick with severe stomach pains. I was very thin, had no energy and spent a good portion of my life in the bathroom – it was miserable. Still, I always kept up a good front and when people asked how I was I would answer positively. Looking back I suspect I was in denial”.
In 2009 Tonya suffered a perforated bowel and talk of an ostomy became more apparent. First they tried a strict diet along with an aggressive pharmaceutical and for a couple of years it appeared to be working. During this time Tonya did everything and anything to avoid an ostomy. Despite her best efforts, in 2011 her appendix burst requiring surgery resulting in an ileostomy.
“When I woke up from the surgery I just cried. I was in the hospital for eight days and I think I cried every day, I felt I had lost a long battle. I also felt very isolated; I didn’t know anyone who had an ileostomy. I remember going home and lying on the couch thinking how will I cope. I went back and forth from being sad to being angry. It was around that time that I heard about a local ostomy support group.”
The Comox Valley Ostomy Support group is a volunteer organization that tries to reach out to people like Tonya. Everyone in the group has an ostomy, or has a loved one with an ostomy. Operating under the umbrella of the United Ostomy Association of Canada, the purpose of the group is to provide support to fellow ostomates and their loved ones.
Connecting with the Comox Valley Ostomy Support Group has made such a difference to my outlook, notes Tonya. “The group did so much for me, the members are not shy about sharing their experiences and how they coped with various aspects of living with an ostomy. Since joining this group I have been thinking about getting further education that may lead to a career that can support and help ostomates. I guess it is like the old adage when one door closes another opens”.
Reprinted with permission via Comox Valley Echo, April 2012
Susan Toresdahl and Tonya Edwards are both members of the Comox Valley Ostomy Support Group
“Don’t Worry, You Can’t Catch It” first appeared in the Winter 2012 edition of Ostomy Canada. You can become a subscriber to our glossy, full-colour publication of Ostomy Canada by joining Ostomy Canada Society. Find out more here.