One of my favorite actors on one of my all-time favorite shows is making colostomy news this week. And not in a great way.
Friends actor Matthew Perry reveals in a new book that his gastrointestinal system essentially exploded in the depths of his experience with opioids and substance use disorder. He was in a coma for two weeks and woke up with a colostomy bag.
“I woke up and realized I had a colostomy bag,” he said in an interview with People. “They said, ‘It’s all too messy down there. We can’t do surgery. But in about a year you can reverse that.’ It was pretty hellish having one because they break all the time.”
Seriously. Hellish because “they break all the time.”
Even people with means can get shitty healthcare, pun completely intended.
If Perry’s healthcare had included an ostomy nurse as amazing as Annie, the woman I was blessed to see when I was recovering from rectal cancer surgery, he might have used different words. He would have learned about the right medical products for his body and his circumstances. Annie told me that having an ostomy wouldn’t stop me from living my life. She was right, it didn’t.
I realize not everyone who gets an ostomy also gets to see an ostomy nurse. Many ostomates get a sheet of paper with instructions.
“Best of luck with your new way of life.”
I’ve told the story many times of my late friend, Belinda, who was in her hospital bed at the nearby university hospital the night before a surgery to install an ostomy. She wanted to know what to expect. I went up to her room and showed her.
I also want to be clear that I appreciate that Mr. Perry is in a place to share his battle with substance use disorder. It’s important to share our stories break the stigmas around various conditions and situations.
At ORAU I work with an amazing group of health communications who have done incredible work to reduce stigma and our assumptions about people experiencing substance use disorder.
I expect they would agree that in shattering one stigma we shouldn’t then stigmatize others. I have been wide open about my experience with an ostomate as a means of demonstrating exactly what Annie told me that August morning 10 years ago.
This is not the end of your life.
Are there messy days? Absolutely. Does my appliance leak? Yes, but not “all the time.”
I expect some of this is attention is media sensationalism. “Look at the fallen star who almost died” and all of that. Truly, I look forward to how he tells the story in his book. In the meantime, I sent Mr. Perry the following direct message on Instagram:
“Hey Matthew. I’m looking forward to reading your book. As a guy with a permanent colostomy, though, I want you to know I’m disappointed in the reporting around your experience with one. You said it was “hellish because they break all the time,” which for most of us is completely not true. I’ve had one for 10 years after surgery for colorectal cancer. Have I had leakage issues? Yes, but not all the time. I’ve run marathons, I swim, ride my bike, lift weights and more without ever having a problem. If your experience was hellish, I would say it’s because you had the wrong appliance for your body, and you may not have had access to an ostomy nurse. Mine told me that this does not change your life, and it hasn’t. I don’t love having a colostomy, but it’s not hellish. I hope you truly appreciate that you’re alive in part because of your ostomy. Please don’t use the possibility of an ostomy as a fear tactic to scare people straight. Thanks.”
I also Tweeted to Julie Jordan, editor of People, who wrote the story about the hellish colostomy. Here’s what I said in response to her Tweet about how Mr. Perry’s story can help others:
“You, and he, could help more people by not making having a colostomy sound like a hellish experience. Colostomy saved his life, and mine. Matthew Perry’s medical team and therapist aren’t doing ostomates any favors with their word choices.”
We’ll see what happens. Perhaps nothing.
In other colon-related news, the New England Journal of Medicine earlier this month published a study out of Europe that questions the effectiveness of colonoscopy as a screening and prevention tool for colorectal cancer.
In the study, more than 84,000 people aged 55 to 64 from Sweden, Norway and Poland were either “invited” to receive a colonoscopy or given “usual care.” In the subject countries, “usual care” does not include colorectal cancer screening.
Only 42% of those in the invited group of 28,220 people received a colonoscopy, while none of the 56,300 people in the usual care group underwent the procedure. A decade later, 259 people in the invited group had developed colorectal cancer, less than half the 622 people in the usual care group who were diagnosed with colorectal cancer. The death rates were nearly identical.
Researchers thus concluded that colonoscopy may not be as effective as previously thought, but their results don’t actually support that position. If everyone in the “invited” group had received a colonoscopy, the risk of developing and dying from colorectal cancer would have been cut in half. So, yeah, colonoscopies saved lives.
This blog post is written by someone whose life was saved by a colonoscopy.
Meanwhile, superstar actor Ryan Reynolds and Rob McElhenney got their colonoscopies on camera as part a project called Lead from Behind. Ryan’s gastroenterologist found one polyp and Rob’s found three, which means they were saved from disease. Bottom’s up to them.
If you’re age 45 or older, talk to your doctor about routine screening for colorectal cancer. If you have a family history of colorectal cancer, talk to your doctor about being screened sooner.
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