Living with ileostomy proves a pain in the butt

Hey there, time traveller!
This article was published 05/10/2024 (459 days ago), so information in it may no longer be current.

I live life with a lot of ”accessories.”

Some, like my central line, pose a constant threat, including the dangers of sepsis and blood clots. Some are annoying — my leaky feeding tube I can’t do anything about. Some cause problems — my Foley catheter results in constant UTIs.

And then there’s my ileostomy, which is a most peculiar thing. It’ll be its two-year anniversary on Nov. 23, and I am still both baffled and intrigued by it.

The day after my 40th birthday was the day my life changed dramatically. Doctors removed my entire colon and formed an ileostomy, which is when they use a piece of your small intestine to form a stoma or opening for emptying bodily waste.

It attaches to a bag we call an “appliance” that is fastened to the torso with adhesive — either a sticky ring that looks like a doughnut or a paste that reminds me of rubber cement.

To put it bluntly: I poop out of a hole in my abdomen into a bag.

Fun fact: my surgeon, who has operated on me many times, said I had a freakishly large colon that was tortuous (his adjectives, not mine) and it was no wonder I was going months between bowel movements.

Bowel movements were a rare “event” that happened quarterly, much like the change of seasons. I was full of shit, literally.

Unlike bowels, you don’t have control over an ileostomy. An ileostomy, or its lower cousin — a colostomy — has a mind of its own. We call the stuff that emerges “output.”

Output comes out when it comes out, without any warning. You can have a bone-dry bag and then have a bag ready to burst 20 minutes later. So you need to be aware of what’s going on, especially if you’re like me and you need someone to empty the bag to avoid a blowout.

Bag blowouts, as you can imagine, are messy affairs.The seal breaks, the bag explodes like a balloon popping and output ends up all over my body, my gown and my bed.

This requires a lot of work to clean up. It requires a bath, bedding change, a fresh gown and then the installation of a new bag. All of this involves a number of people and almost an hour of work.

Recently, we were doing a bag change and the nurse did something risky. She left it open to the air with nothing covering the stoma in case it decided to be active. Well, it did. It spurted upwards about 18 inches into the air.

We just looked at each other and raised our eyebrows. I had never seen that before but I was amazed by the vertical my stoma got. It was impressive.

There is one thing I love to brag about because of my ileostomy: I don’t fart anymore. I don’t have to worry about the discomfort of holding in gas. I don’t have to worry about not holding in gas. I don’t have to worry about the “silent-but-deadly ones,” as my dad refers to such flatulence.

They empty the output into garbage bags. There’s one problem with this. The WRHA uses cheap garbage bags, many of which have holes. The output, which is liquid, leaks everywhere. One time was particularly messy.

My health-care aide took the tied-up garbage bag full of output and was absentmindedly swinging it. The trouble was, the bag had a hole in it. He was swinging poop everywhere: all over me, the bed, the wall, the floor and himself. I looked at him and squealed, “Why are you swinging a bag of shit?” He looked horrified. We laughed.

This cautionary tale is legendary around here and people love to joke about it. When I tell this story, people often ask me why we ended up with garbage bags of poop in the first place. The answer is, I don’t know.

I do have to take a bag full of ileostomy gear with me for all my trips to the hospital just in case my bag fails and I require an emergency bag change. And bags do fail — usually at the most inconvenient times.

Anyone with an ostomy can attest to this. I remember seeing a woman trying to do a bag change in a Walmart washroom many years ago, long before I ever was super sick. I remember feeling bad for her. Well, now I can relate. We give up not only our colons, but also our dignity.

I live a weird and complicated existence, so why should my bowel movements be any different? I think I have enough accessories though. I’m also running out of space on my body to put them. I’m not kidding. My entire torso is covered in stuff — stuff you don’t need to see photos of.

Just remember: don’t swing garbage bags full of poop. Maybe just don’t swing garbage bags, period.

Shawna (Shoshana) Forester Smith is a 41-year-old chronically ill, disabled Ojibwe writer and health-care advocate who lives on a chronic-care unit at Deer Lodge Centre.

shawna.forestersmith@freepress.mb.ca