Today is my 9-month stomaversary. Nine months since I had my colon cut out of my abdominal cavity. Nine months since I had my bowels rearranged. Nine months since I had an ileostomy constructed – a poorly constructed one at that. I have a few friends who after having their colons removed, named their ostomies. I never named mine, but if I had to choose a name for it today, I think I would call it “Cunty McFuckshit.”
In the first few weeks after I was released from hospital, my ostomy wasn’t too bad. I had high outputs (as I still do today), and changing my ostomy appliance was a dirty and difficult task (as it still is today), but Cunty McFuckshit didn’t really cause me much physical pain. Over time though, my ostomy shrunk and receded into my abdomen, and as it did, the more pain it created. The skin around my stoma has been red and raw since July of last year. My ostomy appliance has sprung several leaks.
My nurses and I have tried different flanges, powders, sprays, and adhesive rings around the ostomy, but none of our combinations have provided any real relief. We all agreed that the only real solution was another operation to have the ostomy revised or reversed. The option of a revisal surgery was always on the table, but knowing the healthcare system here in Ontario, I would likely have to wait months for the operation. So, I decided to suck up the pain and wait months for a proper reversal to get rid of the ostomy altogether and get my already installed pelvic pouch up and running. That reversal surgery is slated for this Tuesday, February 11. Hopefully today’s stomaversary will be my last.
I won’t miss the burning and aching and stinging I feel around my ostomy when a blob or a gush of stool pushes through it. I won’t miss the grimaces when I have to rub and wipe leftover adhesives off the already singed skin around the ostomy. I won’t miss the expense of my ostomy supplies. I won’t miss worrying about bags overfilling or appliances leaking. I won’t miss Cunty McFuckshit, but the little bastard did teach me a few things about ostomies.
Get laser hair removal on your abdomen before getting an ostomy
I hate my Middle Eastern lineage for two main reasons: my massive nose and my bear-like body hair. Aside from its detriment to my physical appearance, my nose doesn’t really pose a problem. My body hair, however, is not only hard on the eyes, but also hard on the skin around my ostomy. Constantly applying and removing adhesive products meant the hair on my abdomen was continually being tugged and torn. Trimming the hair in the area is an inconvenient but necessary practice I’ve taken up, and it still doesn’t really get the job done. If you’re on the verge of needing an ostomy, and you’ve got some belly hair, laser that shit off before your surgeon pulls out your bowel.
Sidenote, if you’ve got hairy arms, it’s a good idea to trim/shave that hair before going in for surgery. It’ll make it easier for doctors/nurses/anesthesiologists to start IV lines and draw blood, and whatever tape gets stuck to your arms won’t hurt as much when you peel it off.
Ask your surgeon to give you a good ostomy
At least, ask them to try. If I had a decent ostomy – one that protrudes a bit from the surface of skin – that last nine months wouldn’t have been so maddening. Asking doesn’t equate to receiving, but if you let your surgeon know that a well-constructed ostomy will markedly improve your quality of life, he/she might just work a little more carefully to make it happen. Just to be clear, I’m not suggesting my surgeon put in a lazy shift when he operated on me; I certainly don’t think that was the case.
Get a Stealth Belt
Sagging ostomy bags are no fun. They feel uncomfortable, they impede movement, and they spark worries about leakage. A Stealth Belt, or a similar ostomy support system, will keep your bag in place so you can move about without having to worry about cupping a heavy, sagging, flopping bag. The Stealth Belt is also quite beneficial for fashion, as it can keep your bag above the waistline, making it much easier to wear belts and tuck in shirts.
Seek help if your ostomy sucks
There are different ostomy products out there that work better for certain skin types ad certain ostomies. Finding the right appliance for you will make like a lot better. When it became clear that since surgery was the only real fix for my ostomy, I put up with ostomy products that weren’t right for me because I figured nothing was right for me. And while I’ve never been able to find a perfect appliance combination, I have found certain products that work better than others, and I only found them after repeated visits to my enterostomal therapy (ET) nurse at Mount Sinai Hospital.
Yesterday I changed my ostomy appliance for what I hope will be the last time. Ever. If my pelvic pouch fucks up and I have to get a permanent ostomy, an eventuality that is well within the realm of possibility, I know that it won’t be the end of the world. I can’t imagine I’d have such a problematic ostomy again. I could live with a well-constructed, well-functioning ostomy, but I’d much rather live with a well-constructed, well-functioning pelvic pouch, and however my future turns out, I’ll be happy to see the death of little Cunty McFuckshit.