I named my stoma Ron. I think of him like I think of those ugly, comfortable, European made shoes that many women start wearing in middle-age: necessary, but unfortunate.
There is no way to prepare yourself for getting a stoma. Though my surgical oncologist had explained their function and I had obsessively researched them, the moment you first see the red, bulbous stump sticking out of your belly is brutal. The stump, in my case a loop of my small bowel, moves: it goes in and out, kind of like a turtle’s head. Sometimes it sticks out far, other times it is almost flat. I saw myself like a scary creature from a 1950’s B horror movie: my stoma growing huge and spraying all the townspeople with a disgusting poisonous liquid. “Attack of The Stoma Monster!”
The Stoma Nurse, (there’s a job title for you!), visited me after my Cytoreductive surgery and told me not to worry about my stoma/ileostomy. I could still have sex – just wear the mini-bag! – I could do yoga! I could even surf! Surf?! Just the suggestion of surfing seemed mildly insulting. I had been in the hospital for weeks with many complications after my surgery for Peritoneal Mesothelioma. I’d endured “Hot Chemo” and I was down to a skeletal 90 pounds. Ya, I’m gonna go surfing, go Fuck yourself I thought to myself.
When my mother first saw my stoma I thought she was going to throw-up. “It’s really not so bad,” she said gagging. Yes, it really is so bad. There is no way to sugar coat it. Having your bowel poking its red head out of a hole in your stomach and spewing out vile smelling liquid into a bag which is stuck to your tummy really fucking sucks. I would not wish this on my worse enemy, not that I have any enemies, but if I did I would never wish this upon them. Though, it would be good punishment for terrorists, murderers and extreme nut-bar right-wingers – punish them by giving them stomas. Genius!
There is a chance that I can get “reversal surgery,” which would basically send Ron packing, but I think my chance is quite small. My surgeon is worried about possible “quality of life issues,” meaning that he’s worried about me not being able to hold my poop. Nice. The glamour never ends. At least with Ron and my little beige stick-on bags, I can go out and about with a fair amount of ease. Though it may sound like I am not grateful, I am. Of course I am. Ron is a life-saver. The long term survival rate for those with Peritoneal Mesothelioma is five years, though some lucky patients have lived much longer. So, if I am lucky enough to live a few more relatively healthy years, then I am more than happy to spend those years with Ron. I promise to take care of him. I will wash his stumpy little red head, keep the skin rash-free and eat enough to keep up with his relentless pace. Ron and I will be together till death do us part.
Below is a picture of Ron. He is actually a lovely shade of lipstick red!