Ostomy Support Group Lays Foundation for Patients Helping Patients
Bill Colantuoni of Bow is not a support group kind of person.
But, that changed this year when he attended his first meeting of Pouch Talk. It’s a support group for people with ostomies – surgical openings on the abdomen that allow bodily waste to pass into a pouch or ostomy bag.
Bill had an ostomy as part of treatment for colorectal cancer in the spring of 2018.
He said the life-changing procedure prompted many questions: “What am I going to be able to do? How do I deal with this? How do I take care of it?”
Pouch Talk, made up of two dozen ostomy patients, has answers, based on personal experience.
“It’s a lot of learning as you go, but now I’ve got 25 other people in the Pouch Talk group saying ‘Hey, that happened to me, why don’t you try this or try that.’ I’ve gotten a lot out of it,” Bill said.
Bill, who is 47, said crucial information about his treatment and his future was available, but “it comes so fast, it’s hard to process.” And a patient might not think of a question during an appointment or might not feel comfortable asking.
“Sometimes, it’s a lot easier to ask somebody who has been there and done that,” he said.
Bill, a car repair diagnostic technician, learned quickly, at his first Pouch Talk meeting, that other members of the group were willing and able to help.
“I had my questions, but I wasn’t going to ask them until the next meeting,” he said. “That ended 15 minutes into the meeting. It was so easy to talk to everybody.”
Even though he is a new ostomy patient, Bill has volunteered to visit even newer patients in a new ostomy visitor program to share his experience and encouragement.
“Before the surgery, or even right after the surgery, it would have been helpful if I could have had somebody stop by and tell me, ‘I have an ostomy and things are fine. You are going to be alright.’
“If I can offer that to somebody else, I’m going to do it,” he said.
Group members also are role models, showing they still enjoy life, without drastic changes. One 76-year-old member rides his jet ski every weekend.
“He’s living a great life and I think I could, too,” Bill said. “I’m an avid motorcycle rider, and a couple of days out of the hospital, I was already out on my bike.”
“It’s what you make of it, and the group is very helpful in making sure that you make the most of it,” he said.