The Bag
The Bag
An ostomy bag was my biggest fear, until it became an inevitability and part of my life
This story was originally commissioned by MEL Magazine, which unfortunately was killed (again) last week by venture capital goblins. Thanks to Lindsay Schrupp for her editorial guidance.
When I was diagnosed with colon cancer last fall, my biggest fear wasn’t the chemo or the radiation or even the possibility of dying. Yes, I was scared of those things, but what frightened me the most as treatment discussions continued was the idea of having to shit in a bag.
I tried to take the treatment one day at a time, until I eventually got to the point in May where the next step was to remove the tumor and affected lymph nodes, along with my rectum and part of my colon. This meant I had to “stay off” my lower digestive tract the same way you would have to stay off a broken leg — and that I’d need an ileostomy. This is the procedure in which a loop of your small intestine is pulled out through your stomach, so it can then empty your waste into a bag.
Obviously, I wasn’t thrilled about this. But, the option I had was to either get this surgery and live with an ostomy for a little while, or don’t get the surgery and possibly let the cancer keep spreading until it kills me. So I chose the bag.
And sadly, there are plenty of other young people right now who are facing similar decisions. That’s because rates of colon and rectal cancer are going up among young people. As my oncologist told me after my diagnosis, finding it at 29 is “no longer an anomaly” and I was far from her youngest patient, with the diagnoses and deaths of notable people like Chadwick Boseman being tragic examples of this trend.
The morning after my surgery, I peeked under my hospital gown and saw that there was a deep red bit of innards sticking out of my stomach, covered by a beige bag filling up with a green liquid. It was a shock, but it wasn’t as surprising as it could have been, thanks to an orientation I had with an ostomy nurse about a week prior. After explaining how everything would work, the nurse had urged me to “try one on.” I looked at myself in the mirror as if I were putting on new pants at the store, getting a view from different angles to see if it could be flattering. It wasn’t.
During the week I spent in the hospital, I grew more accustomed to the ins and outs (mostly outs) of the bag. For one thing, they tell you that it doesn’t smell, because the traditional poop smell comes from bacteria in your large intestine. If that’s true, then why do they make the deodorant gel in the bag? I quickly found that this thing had a brand new strong, musty stink.
Soon, it started to feel normal. And apart from the smell, I honestly forgot it was there some of the time — until the morning of my discharge, when I woke up soaking wet. The Menzingers shirt and FC Barcelona shorts I had changed into to feel a little more myself that day were drenched with brownish-green spots. At some point overnight, the barrier seal that holds the appliance around the stoma gave up, and everything leaked onto me. I rang the bell for a nurse, holding as still as possible to limit the damage.
With no response from the nurses, I had no choice but to use all of my training. I stripped, armed myself with supplies in the room and tried to replicate how I had been instructed to remove the appliance and put on a new one (while on pain medication and lacking sleep). I thought I did okay, but I didn’t, really; it leaked again when I got home. Still, there was something empowering about handling it myself.
Over time, I got better at it. But as I learned, shit still happens. The thing with an ostomy is that you have no control over the output — that is, when you poop. It can depend on when you ate, your hydration and a number of other things, but it just goes when it goes. It seemed that mine would start the second I tried to change out the old bag, making it feel like a messy plate spinning act I kept failing at, and one that, unfortunately, often involved other people.
An ostomy nurse visited my house every few days after I came home from the hospital to help apply the device, but every time we were interrupted by my output, I felt like I was a baby having its diaper changed. No matter how kind the nurses are, it’s tough to accept that you’re 30 and actively shitting on a guest in your home.
Once, after showering, I was cleaning off the area, prepping it with powder to combat skin rawness from adhesive, when the output just would not stop. The putty-like ring designed to provide extra protection against leakage wouldn’t stick to anything but my fingertips. I felt overwhelmed and started to panic. Sheepishly, I called downstairs for my partner to help me.
I’ve been in this relationship for 10 years, so there aren’t many secrets between us. But I still want to sustain some semblance of capability and grace. I’d like to be someone she finds, you know, attractive physically. Back when I was able to do so the way the Lord intended, I tried my best not to even fart around her if I could avoid it. So the image of me sitting naked on the toilet — literal shit streaking down my stomach, fumbling with a gummy ring stuck to one hand and frantically trying to tear off paper towels to stop the flow with the other — seemed like the kind of thing that would turn her off forever.
And yet, the feeling of my partner volunteering to help me change an ostomy bag is a validation of love unlike anything I’ve experienced — even if it’s validation I wish I never had to experience.
I’ve never aspired to be the macho alpha male type of guy, but these moments can still be wildly emasculating, as everything feels so far out of your control. And it’s hard not to feel infantilized when you’re throwing soiled shorts in the wash for the second time in a day or wiping up the floor from another accident or setting down a towel next to the bed at night — just in case.
Still, I knew I needed to work on shifting my mindset to accept my mistakes and my body’s natural mechanics, but there wasn’t an easy solution. Therapy has helped me talk about it more freely, but only time and continued exposure could help me start to feel “normal” again.
And every time I changed out the bag, my confidence grew. I learned tricks from the thriving online ostomy community, like the r/ostomy subreddit. It turns out eating marshmallows will effectively halt the machine, buying you about 10 to 15 minutes to change the appliance in peace. (My magic number is four marshmallows.) And I also picked up some inspiration from others I met offline.
Shortly after I came home from the hospital, I decided I wanted to go to the beach. Prior to my surgery, I had gone on a trip to Jamaica, where I saw a guy wearing what I recognized as a stealth belt, which is basically a black elastic cummerbund that holds the ostomy tight to your torso, making it very inconspicuous. I wouldn’t have even noticed if I hadn’t been researching them myself. I told him I’d have the same surgery soon, and that seeing him out and living so normally made me feel better. As I lay in bed post-surgery, I ordered a belt for myself.
At first, I couldn’t imagine myself post-surgery at the beach or a pool without my shirt on. I still thought about people staring at me. But, with my black belt sticking out of my hot pink bathing suit, I wasn’t exactly hiding. I decided I deserved this, and I spent the day pretty much as I’d spend any beach day. I got in the water. I ate pizza and ice cream. No, I couldn’t joke about not needing the bathroom because I had the ocean and yes, I had to find toilets where I could empty out the bag — but I did. It was a typical day on the beach, except for the short trip to a porta potty to dump some shit. And with the belt, there was no bag peeking out from underneath my shirt or creating a weird bump on my stomach. I felt like myself again, at least in how I presented myself to the world.
While I can’t say I’m totally at peace with my current situation, or that I never have self conscious moments, what I originally thought would leave me disfigured and repulsive to others is just another part of my life for now – a part I don’t feel like I need to hide quite as much as I did.
People get ostomies for many different reasons, not just colon and rectal cancer, and I know everyone’s experience is different. But while spending time on r/ostomy, I saw some experiences that really resonated with me. “Life with an ostomy is rough at first but easy once one gets the hang of things,” one r/ostomy user, whose ostomy is permanent, wrote. “Surgery saved my life and gave me normalcy with reasons to live, like meeting my now wife, having our first child and expecting our second.”
When I got diagnosed with cancer last fall, I didn’t really let myself start thinking about dying, or the horrors of treatment. My brain went into survival mode I guess, and I just thought about how I could beat it. For me, while having an ostomy has changed what my life looks like, I get to literally keep living. Which, I think, is the important part.
Since writing this, I’ve gotten the second surgery to reverse the ostomy, which presents a whole new set of challenges - some being permanent. I’m sure it will be the subject of an essay down the road. But, I chose to keep this written in present tense as it was for MEL.
Today’s Snakes and Sparklers musical guest is The Beths.