life with an ostomy. candid, not sugar-coated. empowered, not embarrassed.

Sep. 26, 2006

An abridged history

When I was 10, I went to the bathroom and it felt like razor blades were coming out of my anus. 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. 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, who 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, but 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 chewed about 25 times before carefully slipping the food down my throat. My abdomen was mostly always distended, and 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 55 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. No one could find out. I had a stash of soiled underwear that I kept hidden in a drawer because I didn’t want my mom to notice that I had shat myself when she did the wash. I saw two different doctors during these secretive times who never figured 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 12 that I started to understand the anatomy of my digestive tract, and it became clear to me over the course of many years 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.

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 in 2002, at the age of 22. My digestive tract now 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 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 on the flange that collects my poo, and which can be emptied while I sit on the toilet through a very intelligently designed drainage mechanism at the bottom of the bag.

When my surgeon formed my ileostomy, he also removed my anus, rectum, and large intestine. I asked, but 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. I also finally got the chance to live without pain.

In March of 2006, I started this 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 having 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 rants, but I speak from my gut… what’s left of it anyway. Thanks for stopping by.