At 80-years old, Joseph E. Thompson of Champaign doesn’t know how to sit down. He loves working out and being outside – fishing, boating, kayaking and more.
In his early 20s and 30s, Thompson was a heavy smoker, but by the age of 34, he managed to quit and never looked back. Although he quit so many years ago, it didn’t stop him from getting bladder cancer. After the removal of Thompson’s bladder and prostate gland, he turned to Carle Foundation Hospital to have surgery for his ostomy pouch.
“I grew up there,” he said. “My father worked at the hospital and was very active with the organization.” Thompson’s father was one of Carle’s first surgeons.
Once his operation was complete, it took him six months to recover from it and another six months to feel like himself again. To help Thompson with his ostomy pouch, he joined Carle’s Ostomy Support Group.
“Over the years, I’ve been a part of many different support groups for a variety of things, and I’m used to talking about how I feel,” he said. “I’ve been taught to own my own reality. I have no problem listening, learning or asking. I’ve been there, done that.”
Thompson truly believes support is critical to an ostomy.
“People are here for you,” he said. “The operation ruined a lot of things for me. I could be angry or sorry, and I’m not. I could be bitter, but it’s a waste of time.
“When I got the ostomy pouch, I didn’t want anyone to know. Putting it on for the first time, I passed out. Once I woke up, I saw it was on, got up and went about my day.” Thompson can now put it on in his sleep even though it’s not easy.
Being a part of the support group, he feels like he can be an example to others.
“I have something to offer the group, and if I can help spread the word, too, I’m keen to do so,” Thompson. “Having had immunotherapy and living with an ostomy, people are up close and personal – doctors, nurses, techs, etc. They are right there with you dealing with the worst of the worst, and they are there to help.
“I once thanked a nurse because of the situation and the service she provided, and she cried. It was the first time anyone thanked her. Most people, when they’re dealing with this, are angry and fearful, but people need to remember they’re here to save our lives. I’m grateful.”
Leigh Kauwell, Carle RN manager, Wound Healing Center and Inpatient Rehab, has been helping out with the support for five years.
“Nancy Bollero, Chin-Yin Chou and I felt there was a need to support these patients, so we started a group,” she said. “We have speakers come and talk about various topics such as nutrition, exercise and dealing with anxiety. We even have representatives from ostomy product companies come and show the group some of the latest pouching systems, products and clothing. With COVID-19, we started doing the meetings online.”
The group generally has close to 10 people who gather monthly, but they are always looking to support more folks.
“We are here to help support people in the community with ostomies and to provide a safe place of understanding,” Kauwell said. “You can ask questions you may not feel comfortable asking your family and friends. We answer questions and help troubleshoot issues.
“Our group is amazing, and we all learn from each other. I feel this helps with people feeling less lonely, judged, embarrassed or anxious.”
Out of everything that’s happened to Thompson, he reiterates that support is key in dealing with an ostomy.
“I didn’t quit being me because of this darn thing!” he said. “I’m still alive and have had great success dealing with everyone at Carle. I want to be able to provide that for someone else. I’m here to help any way I can.”
If you have an ostomy or know someone who has one, the next online meeting for Carle’s Ostomy Support Group is Wednesday, Sept. 16 from 6 – 7 p.m. Click here for more information.