By Gord Bowes
About 250 people receive ostomy surgery each year in Hamilton.
Only about one per cent of them contact the local ostomy support group.
“It’s not something people like to talk about, because it deals with feces and urine,” says Janet Paquet, past president of the United Ostomy Association of Canada.
“People don’t want to think about it.”
Paquet, a west Mountain resident, says local hospitals give ostomy patients a package from the local association chapter full of information about how to deal with their changed life and to let them know they are not alone. Hospitals can’t give the association information about patients, so those who receive the surgery must seek out the association on their own.
Before current privacy laws, the ostomy association would be able to get that information from a nurse and visit the patient before they were discharged.
Last year, the group only received two or three inquiries from new ostmomates, although they handed out about 250 information packages.
“The packages are really comprehensive and maybe people don’t feel they have the need to talk to another ostomate,” says Paquet. ““There are more ostomy surgeries being done all the time, but we’re not getting the people (joining).”
Having more members is important for all ostomy patients, she says.
The United Ostomy Association of Canada is lobbying to get more government funding of ostomy supplies. Currently, in Ontario, there is no coverage for people with temporary ostomies. For those with permanent ones, there is a $600 annual cap. Paquet estimates she uses more than $2,400 worth of supplies each year.
But without a large body of voters clamouring for change — there are only 3,000 members of the association nationally — the government doesn’t have a lot of incentive to increase the coverage.
Paquet has been sick with Crohn’s disease since she was a child. Since age 11 she has had 15 bowel surgeries, most of them between the ages of 17 and 27.
She says she had wanted an ostomy since her early 20s, but doctors thought the bowel resections were a better choice because of her young age.
“For me, getting sick and having the surgeries, they kept on cutting pieces (of diseased bowel) out because it wouldn’t respond to medical treatments,” says Paquet.
Eventually, at age 27, after so many pieces were cut out there was virtually nothing left to sew back together, she required an ileostomy in order to get feces out of her body.
An ileostomy is a surgical opening which brings the small intestine, or ileum, out of the body through a stoma, or medically created hole, in a person’s abdomen and into a bag for later disposal. A colostomy is a similar procedure but dealing with the colon or large bowel. A urostomy is a stoma for the urinary system.
Paquet, now 41, says the ostomy gave returned her life to her.
“I don’t even like to think of that time,” she says, adding she knew where every single bathroom was in the city and a trip to Mississauga would require two bathroom stops.
“It was awful before. I don’t know how I did it. How did I manage to get married and have a baby?”
But the surgery is just the start, says Paquet, and that’s where the association comes into play.
“(An ostomy) is not just physical, it’s also emotional … how do you deal with it now that you are no longer ‘normal,’ or what is considered normal.”
After her ostomy surgery, Paquet was having trouble adjusting emotionally and dealing with proper care of the appliance. She was discharged from hospital quickly, before she was fully up to speed on how to deal with her new situation, such as how to change it, how to deal with leaks. Fortunately, Roger Ivol, then president of the Hamilton chapter of the ostomy association, was a friend of the family.
“It was great because I finally got to talk to other women my age who had gone through the same thing I had gone through,” says Paquet.
The local chapter matches up ostomy recipients with someone who is their same sex and roughly the same age, so she was able to talk about dating and other personal issues with women her own age.
Ivol, who is still president of the local association, says he is concerned new ostomates suffer in silence and only later do they read the literature in the package they receive at the hospital upon their discharge.
“That’s when they and their spouse/partner/family find out about the association and learn that they can get practical help,” he says.
Another challenge is finances, says Ivol. The group gets United Way funding and donations from members and benefactors, but also needs to hold fundraisers to supplement the income to carry out our programs.
“(Last month) we delivered 20 ‘Gastronaut’ hand puppets to McMaster Children’s hospital to help the very young ostomates overcome some of the trauma by getting a puppet that has an ostomy like they do,” says Ivol. “The puppets come from Wales. McMaster is the only hospital in Canada to carry these special puppets. And we’re pretty proud of that.”
For more information about the Hamilton and District Ostomy Association, which meets the third Tuesday of every month except for July and August at Sacred Heart Parish Community Centre, 24 Poplar Ave. on the Mountain, see ostomyhamilton.com or call 905-389-8822.