It’s not every day that ostomy bags are featured in entertainment news like People and the New York Times. So imagine my surprise last weekend when I saw these outlets and others (including The Daily Beast) pick up a story about Matthew Perry revealing he was living with a temporary colostomy for nine months. “Oh wow!” I thought, ‘A celebrity talking about having a stoma? Maybe stars really are just like us.”
But my enthusiasm faded pretty quickly when I read Perry’s comments about his “hell of hell” ostomy experience (perhaps only the second most controversial Perry news piece this week, after his startlingly bitter feelings about Keanu Reeves). And I wasn’t the only one, as his words spread like fire throughout the ostomy community, leaving people angry at best and offended at worst.
As Perry told People in an article about his forthcoming memoir, his colon ruptured in 2019 after years of opioid abuse. He spent two weeks in a coma before waking up to find he had undergone emergency ostomy surgery – which involves creating a surgically created opening called a stoma in the abdomen to allow waste to leave the body – to save his life.
“I woke up and found I had a colostomy bag,” the Friends star recalled. “They said, ‘It’s too messy down there. We can’t operate. But in about a year you can reverse that.’ It was pretty hellish having one because they keep breaking.”
He went on to say that having an ostomy helped him finally break his long-standing pattern of addiction. He told People, “My therapist said, ‘The next time you think about taking OxyContin, just think about having a colostomy bag for the rest of your life.'”
Some outlets that aggregated Perry’s story framed it more responsibly than others. The New York Post wrote, “The frightening experience and sight of a colostomy bag was what ultimately drew Perry,” as if those of us with stomas resemble spooky Halloween decorations that inspire fear, rather than normal-looking people and even current models. Page Six read, “How Matthew Perry’s ‘hellish’ colostomy helped him overcome his drug addiction.” Even People put it questionably in their own headline, writing that Perry has “recovered from his colostomy” — an odd choice of words, considering remember that you don’t “recover” from a colostomy.
“This is grossly inaccurate,” said Glenda Hamburg, a Los Angeles ostomy nurse for wounds for over 30 years, of the People headline. “You don’t recover from a colostomy. A colostomy is simply a procedure to save your life. You can recover from drug addiction; that’s a whole different matter. What he should have said was that he was able to quit taking drugs after he nearly died and the colostomy saved his life.”
After Perry’s story broke, many in the stoma community were offended that the actor (and his therapist) portrayed a stoma as the worst-case scenario and the last thing you ever want. Such comments, argued many ostomists, reinforce negative stigma and stereotypes.
James Murray, the president of the United Stomy Associations of America (UOAA), issued a written statement addressing the potentially harmful way Perry framed his experience.
“While it’s wonderful that Perry has fought to end his addiction, these words sting for those of us grappling with the consequences of ostomy stigma in our society… Despite the fact that ostomy surgery saves or improves lives , there are still people who believe that death is a better choice than this surgical procedure. People of all ages struggle with body image and acceptance issues in living with an ostomy, and committing these stigmas can leave deep scars,” Murray wrote.
Also of concern was Perry’s hyperbolic comment that ostomy bags “break all the time”. Pouches sometimes leak, but this is not considered normal, especially for people who are given (and engaged in) the proper stoma care education and resources. It’s obvious that, for whatever reason, Perry hasn’t been adjusting well to an ostomy. Certainly some people struggle with leaks, irritated skin, hernias or blockages that can traumatize ostomists – even the rich and famous. But saying they “break all the time” really makes it seem like living with a bag is just one long nightmare, and one can’t help but wonder if Perry had the right time and support his colostomy could have coped better.
That said, I don’t blame anyone for feeling negative about a stoma because the truth is, it can really suck. I was 19 when I had my first ileostomy after emergency surgery to remove my colon due to complications from Crohn’s disease. Almost two years later I was able to have reversal surgery – an option not always available to everyone – and I was thrilled with it. I hated wearing my stoma during my “funny college years,” and my resentment of it manifested itself in disordered eating habits, depressed thoughts, and anxiety.
When I had to have another ileostomy in August 2021 at the age of 30 – this time for an annoying, painful rectovaginal fistula – I was able to see things differently; one that I think was just older and more mature. I realized what many ostomists already know: that you can live a great, fulfilling life with a stoma. Last year I ran two marathons with my bag, including the Boston Marathon. Other ostomists I know have had babies and gone scuba diving. We’re not as limited as you might think; Many of us can hike, swim, surf, have sex, wear bikinis, and play sports just like everyone else.
“I realized what many ostomists already know: that you can have a great, fulfilling life with a stoma. Last year I ran two marathons with my bag, including the Boston Marathon.”
However, people reading Perry’s comments may not realize that these things are possible and may instead equate the surgery to a death sentence. I worry for someone who maybe one day faces a stoma and thinks it’s going to ruin their life because all they know about it is that Chandler from Friends had one and told People magazine, how “hellish” it was. It’s troubling news, and one that’s particularly frustrating considering Perry could have described his experience honestly while also acknowledging that what he hated so much was also what saved his life.
“That alone is enough to make people think twice about having a colostomy given the choice on the matter. They’re going to have a very negative attitude towards it, even though it could save their lives,” Hamburg told The Daily Beast of Perry and his therapist’s comments. “He didn’t put it like he was lucky because they were able to do something like this in a temporary situation so he could survive, so his body could heal, so he could recover. He phrased it in a very negative way, including the fact that he actually put his sobriety down to having a colostomy. It casts a very negative light on the concept of a colostomy and the fact that it wasn’t done to make him realize he needed to change his behavior. It was done to save his life.”
At the same time, it’s a nuanced issue for a number of reasons, including the fact that Perry’s negative experience of his colostomy may be compounded by feelings of shame. As he told People, his colon ruptured from years of opioid use, and it’s clear he regrets his past drug addiction. I don’t pretend to understand the emotional and physical struggles surrounding his battle with addiction and subsequent recovery, and I’m glad he’s found sobriety in every way possible. But I wish the framing of his story had been different because his comments perpetuate the myth that ostomy is solely a negative outcome. In reality, ostomy supplies can greatly improve the quality of life for people like me who wear our pouches because of a condition like Crohn’s disease or ulcerative colitis that has left us feeling toilet-bound during painful flare-ups. Certainly nobody wants to deal with such serious health issues – or birth defects, cancer, injury or any of the many other reasons a person might need an ostomy – but when and if you are faced with them, it’s a relief to know that they are effective surgical procedures that can give you the appearance of normal life.
A close-up of the stoma on the abdomen of Jessica Grossman, 25, who suffered from Crohn’s disease as a child.
Chris So/Getty
Ultimately, I think the stoma community’s resentment towards Perry stems from the simple fact that stoma is not widely covered in the media at all and this was a rare opportunity to get it right and not add to the bad perception, which most people have. According to the UOAA, up to 1 million people in the US live with an ostomy or incontinence drain, but many people still don’t know what an ostomy is. The notion that an ostomy is the worst thing one can endure therefore has more to do with the general public’s perception of ostomy as disgusting and to be avoided at all costs, as Perry’s therapist seems to have suggested. I know from experience that people imagine all sorts of cruel and gross things about ostomy bags (cue all the “shit bag” jokes) because there just isn’t much education around them. Not to mention that when you have a stoma, you are different from most people, and no one wants to be seen as unusual or “faulty” by societal standards. It’s hardly a glamorous image; certainly not very “Hollywood”.
With that in mind, it would have been nice if a celebrity with a big platform helped erase the stigma of being an ostomist, rather than promoting it as Perry sadly (and I imagine unknowingly) did here. And it’s not just him; The news outlets that reproduced his quotes were also complicit. The way we frame stories about people’s disabilities is important, and in this case it should have been handled with more care and less sensationalism.
At the very least, this will hopefully lead to more conversation and education about stoma – which, I assure you, isn’t as “hellish” as you might have believed.