Friends of Ostomates

I was pretty upset when I first read about Matthew Perry's ostomy comments. Here is someone just spewing misinformation about ostomies and telling only the bad side of things. But then I took some time to sit with my thoughts over the past week. I re-read many of the articles written about his memoirs and I have come to a different realization. I am not upset at what he wrote. I feel 'understanding and disappointed'. I understand how his experience could be so terrible. I am also disappointed he used his platform to spew stereotypes and play into stigma; instead of advocating for better care.

Without access to his memoirs all of this is information is based on what news outlets are reporting. A lot of the articles focus on his comments about how terrible he says the ostomy experience is. Thankfully, the NYTimes article discusses the ostomy in passing and really focuses on the drug addiction as the heart of his issues. These types of articles are not meant to share facts, they are meant to share one person's story. And that's where I started reflecting on the situation.

My understanding of his situation (I have limited information obviously) is that there was more going on than just having an ostomy. His drug use caused a perforated bowel. This can be life threatening and the ostomy was probably just one part in saving his life. I understand that drug detox leads to diarrhea and other digestive issues that can make having an ostomy difficult. All of his surgical trauma, coma, and his heart stopping during surgery; can all have an effect on his ability to deal effectively with the ostomy and the pouching system. Add the mental space he was likely in from everything combined and that's enough to make anyone have a hard time with any situation.

Matthew Perry's ostomy experience was terrible. That is his experience and I can't be mad at him for that experience. In fact, I am understanding. A lot of people have bad experiences with their ostomy, especially when they first get one. Everyone's situation is different. Everyone's need for an ostomy is different. His issues were caused by his drug use. My issues are because of dysmotility. Others might be because of Crohn's disease, or cancer. All our experiences will be different. All our complications will be different. All of the ways we deal with our ostomy daily might be different from person to person, issue to issue, treatment to treatment. It takes time to understand how to care for it. It took me 6 months just to feel comfortable touching my ostomy and cleaning the area without feeling grossed out.

It's hard to come to terms with something like ostomy surgery. I realize I am asking a lot here, but I am disappointed that only the negative aspects were focused on. Matthew Perry has a platform he can stand on and that could have been used to say, "this was terrible, let's make it better". But looking back at the articles I think his point is simply, 'drug use is terrible. Here's why it's terrible. Here's what I went through. These are bad things'.

The real problem I have with his comments is that he says them as if they are universal. He said things like 'Ostomy bags break all the time' vs. 'my ostomy bag broke all the time'. There's a difference in those statements. One is condemning all bags and painting everyone in bad light and one his describing his personal experience. Bags may come loose from the skin and leak at times, but they don't break. And I do understand that a lot of people have leaks often but plenty of others don't. His statements paint visuals of all ostomates in stereotype.

These negative only comments hurt the efforts that many of us go through to help people deal with their ostomy. It's bad at first but it can get better. You don't need to feel alone with the ostomy. You don't need to feel like no one will like you. The stigma doesn't have to define you. While Matthew Perry isn't required to advocate for ostomates it is upsetting to hear someone shouting from their place of influence that this medical treatment you live with on a daily basis is a horrible thing.

I don't know why his experience was so terrible.  I am disappointed in the healthcare system if it didn't give him what he needed to deal with it. Unfortunately, a lot of patients don't get the care they need. This is why ostomates need to build their support base. There are doctors, WOCN nurses, manufacturers of ostomy products, fellow ostomates, and support groups. Finding the right people to support you is so important. Learning to deal with your ostomy takes time and some trial and error.

The UOAA said in their article, "even TV stars are vulnerable to poor ostomy care". I don't fault the ostomy nurses who took care of him or taught him how to deal with it. They may have done everything right.  Matthew Perry needed more support and he didn't get it or he didn't seek it out. And if TV stars can't get the support they need, where does that leave the rest of us?

 So I understand his experience. I am disappointed that his comments paint ostomies in a negative light. I am disappointed that Matthew Perry didn't use his platform for advocacy instead.