Life With Ostomy
One day at the age of ten, I went to the bathroom and it felt like razor blades were coming out of my anus. At the time, I thought it was because I had pushed my heel into my ass to put off going to the can while I sat in front of the TV getting really high scores on Tetris. But after a week or so of these really painful shits, I realized the situation was getting really serious. But I still thought it was my fault, and it was so embarrassing...
I told my sister in private. She threatened to tell mom if I didn't. So I told her I would, but I never did.
A good year and a half went by, during which there was way more wrong than just feeling like there were razor blades coming out of my ass. Thick, dark blood was coming out with the poo. The poo became really stinky. I totally lost my appetite -- in fact, I started to gag every time I swallowed unless I took incredibly tiny bites and carefully chewed about twenty-five times before slipping the food down my throat. My abdomen was almost always distended, and it usually hurt. Every night it took me about an hour to eat dinner, even though I'd never finish what was on my plate, and after eating I would invariably be hunched over in pain. I also became so emaciated that my bones were poking out all over my body and I could grab my ribs and slip my fingers at least a couple of inches underneath the rib cage. It was a pretty cool attention-grabbing trick I could show my friends, who took me less seriously as time went by since I was not as mentally, physically, or socially alert as they had known me to be before.
By the time I was twelve, I weighed fifty-five pounds. I would have to fold up toilet paper and slip it between my ass cheeks in between desperate trips to the washroom to unload because there was always leakage between shits. Shitting -- and finding places to do it without people noticing -- completely consumed my consciousness. I had a stash of soiled underwear that I kept hidden in a drawer because I didn't want my mom to notice when she did the wash that I had shat myself.
I saw two different doctors during these secretive times. Neither one realized I was lying when I said my bowel movements were just fine -- they just figured I was anorexic.
It was only after I was diagnosed with Crohn's Disease at the age of twelve that I started to understand the anatomy of my digestive tract; and over the course of many years it became clear to me that none of this was really my fault and that I wasn't the biggest freak in the world just because I was shitting blood and because when I stuck my finger up my bum, all I felt was raw, bloody flesh.
In 2002, at the age of twenty-two, after all kinds of health complications, invasive procedures, drug therapies, and an adolescence that was both joyous and fucked up on many fronts, I had ileostomy surgery. Today my digestive tract ends with my ileum, the last part of my small intestine. The last inch or two of my ileum was pulled through a little hole in the lower right quadrant of my abdomen, turned upon itself like a turtleneck, and sewed into the skin of my abdomen. The part of the intestine that sticks out is called a stoma, and out of it comes a more or less constant flow of excrement, since there is no sphincter or any other way of controlling output. Every week or so, I put on a new flange, which is a round disc, sticky on one side, with a hole just large enough for my stoma to come through. Then I clip a bag that collects my poo on the flange. The bag can be emptied while I sit on the toilet through a very intelligently designed drainage mechanism at its bottom. (Editor's note: Here are a bunch of pictures another ostomy patient has posted online.)
When my surgeon formed my ileostomy, he also removed my anus, my rectum, and my large intestine. I asked, but I was not allowed to take any of these home with me, even if they were steeped in formaldehyde and permanently sealed in a big jar. But in exchange for these expendable body parts, what I did get was a bunch of interesting stories, and a perspective on life that I probably wouldn't otherwise have. I also finally got the chance to live without pain.
In March of 2006, I started a personal blog to share some of my stories and thoughts on life with an ostomy. I also write about some big questions related to life with an ostomy that I don't have the answers to. The blog is part of an ongoing self-reflective process for me, but I'm increasingly finding that it's a useful resource for others, and a good place to get some dialogue started on issues like stigma and shame. The site has been popular particularly with people who have ostomies, and for those facing the surgery, but sometimes it gets visitors who have never heard of an ostomy before. This makes me happy, because ostomies get very little attention in the public sphere (and when they do, it's often pejorative). The blog is a space where I can tell the truth and retain my dignity. It's filled with contradictions and sometimes with rants, but I speak from my gut… what's left of it, anyway. Please have a look.
Below is a story reprinted from the author's blog. You can find the original version here.
by My Pink Button
Since the surgery, I haven't been able to sleep for more than six hours straight without getting up to empty the Good Year Blimp. It's gotten to the point where I can practically sleep-walk to the can, and go through all the motions of emptying my bag without much thinking. I've gotten used to it and it's only when I think about it heavily that I feel sorry for myself and decry the ill-effects this nightly disturbance to my REM cycle must be having on my complexion.
Pooping in the middle of the night whilst camping, is not quite so easy.
When I'm camping, it's a whole different routine. The bathroom -- or outhouse in most cases -- is often a fair walk away, I have to put on my shoes, there's no simple light switch, it's cold, unfamiliar, and basically it's just not a smooth ride.
I went camping with my sister and her fiancé in February. It was camping in the snow, which would not at all have been enticing to me were it not for the hot springs that were nearby.
Anyway, I came up with a brilliant plan before going to sleep that would avert all the bother and discomfort of having to put my coat and shoes on and trudge up the hill to the outhouse to empty my poo-filled bag when I would inevitably wake up at about 4 AM, sleep-filled and disoriented.
I had a couple of sturdy grocery bags, and the plan was to simply get up, unzip the tent, poke part of my body outside of it, and empty the contents of my bag into said plastic reservoir, double-lined of course. Then I'd wipe, re-attach the Velcro, roll that puppy back up, zip up the tent and climb back into my down-filled cocoon of warmth and sweet dreams. Easy frickin' peezy.
When my bag got to be quite full, I did what I often do in the middle of the night to buy myself some time, or to let myself finish off some amazing dream. I released some gas. And boy, there was no shortage of that given the navy bean soup my sister had boiled up for an appetizer that night.
About an hour or so later, it was time. I began rustling around in my sleeping bag to get myself out and grab the plastic bags so I could execute the genius plan. But as I was rustling out of my bag, I noticed the rankin' smell coming out of it. I thought, "My god! That gas was potent" -- assuming that I had simply been marinating in a Dutch oven of navy bean farts until I allowed even a peep of air to escape sixty some-odd minutes later.
So the plan changed. Believing that my gas was that bad, I figured it would be a great disservice to my sister and her beau if I let the poop out in the vicinity of them sleeping. So on went my shoes, and plastic bags in hand, I headed outside of the tent, in the snow, the falling snow, to empty my bag several steps away from the tent. So I go to grab my bag and what do I feel? Wet fleece pants. And then I reach up to my stoma, half panicked, to confirm -- oh my god -- that it was naked.
Seconds later, my sister woke up to the tune of me saying, "Oh fuck! Oh fuck! Oh fuck!" She asked what was going on, and so I told her I lost my bag somewhere between my sleeping bag and where I was standing now. Seconds after that, the worst-case scenario is confirmed. My loving sister discovered that my bag of poo and its contents were, for the most part anyway, inside my sleeping bag.
Not only was the poop spread wildly about my sleeping bag, I also found it was all down me, on my shirt, and even on my wool scarf. I was poo-soaked and standing in the snow, frozen. Frozen, yes, because I was cold, but more so, frozen not knowing quite how to proceed.
About fifteen or twenty minutes later, I had managed to clothe myself in clean garments and was more or less hating myself and wishing I had not come on the trip as I climbed into the tent. My sister has rolled up my sleeping bag and pushed it to the end of the tent. She then told me that I had no choice but to climb into her sleeping bag with her.
Now that is love.
Until the sun came up, we spooned. Very uncomfortably, mind you. I barely slept, and when one of us wanted to shuffle, the other one had to cooperate with every motion or risk suffocation. The fabric of her sleeping bag was stretched tight and there was not enough extra room to even insert something like a sheet of paper into the bag.
She got up with the sun and headed for the hot springs while I, still feeling miserable, tried to sleep as long as I could. It was embarrassing and horrid, but my fellow-campers treated me with nothing but respect and love. After the self-loathing and sense that my entire weekend had been ruined, I managed to have a good time for the rest of the trip; and now, with this incredible story, I am that much richer.
Read more stories and learn much more about life with an ostomy at My Pink Button.