I'm A Young Person Who Has A Colostomy Bag: This Is My Life
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You probably don't worry about your butt failing, but time? She comes for us all. She came a little early for Kayleigh, who was in a car accident in college, and had to have a colostomy. We asked her what life is like when you have to spend every moment of every day thinking about your own poop. As opposed to every other moment, which is totally normal. R- right?
You'll Become Real Familiar With Your Insides, Real Quick
Someone who's had a colostomy has had their intestines surgically rerouted, from their butt to a hole in their stomach. This hole is called a stoma, over which a disposable plastic pouch, colloquially known as a colostomy bag, is fitted and secured with adhesive ...
... Depending on the type of pouch, you might need to change and clean your stoma a few times a day. That means you're going to be spending a good percentage of your time face-to-face with your own intestines, and that can be jarring, to say the least.
"If I got hungry when the bag was off and I was cleaning the area, I could actually see my intestine wiggling around," Kayleigh says. "It looked like it was alive. In fact, I named it Wiggles in the end."
"It's funny how much you learn about your internal organs when you literally have to look at, touch, and clean your actual intestine every day," Kayleigh continues. "For example, I'd only have to look at a glass of Pepsi, and the colostomy bag gets a deposit. Your intestines get to work when you're hungry, when you see food, and when you're eating. It's bizarre how immediate it is."
The fun doesn't stop there. Watching yourself poop is both an alarming and inconvenient experience:
"I got caught out in the beginning quite a lot, where I'd be out in public and then suddenly the bag starts filling rapidly," Kayleigh says. "Also, it always seemed to happen to me when I was cleaning my intestine (literally, with these special wipes and you dab the actual intestine and the surrounding area). I'd remove the colostomy bag, start cleaning the site, and then bam, my exposed intestine decides to just start pooping. You can't put another bag on if that's happening because you have to make sure everything is super clean beforehand, so I'd just be lying there waiting for it to stop. I was late SO MANY TIMES for appointments -- uni, etc. -- because of that."
To be fair, if you can muster up the courage to throw out a "Sorry I'm late, I was uncontrollably shitting," people don't tend to question you.
There Are So Many Ways For It To Embarrass You
Once you take your butt and its attendant muscles out of the equation, you suddenly have no control over when you poop and fart. And that pouch is flimsy.
"If you can't get to a restroom to empty it quickly, then you're looking at a leak/explosion situation," Kayleigh says. Although she never had to face a poop-bomb scenario ("oh thank god for that!"), she "did have a couple of leaks, and I can't even begin to explain the utter panic!"
Unlike the normal-butted, who always have the option of speed-walking to the restroom and throwing out their underwear when a burrito breaks bad, "there's literally nothing you can do about that if you don't have change it."
All you can do is sit there and pray for the bowel gods to take pity on you.
It always seems to happen at the worst times, too: "Once was when I was waiting for a doctor's appointment, and I realized I could smell something not nice, and it was because I still hadn't quite got the hang of changing the bag by myself, and I hadn't secured it well enough," Kayleigh says. "I was just sat there, willing my body to just not do this to me, and trying to press the bag onto my tummy so it didn't just totally peel off."
After that, she learned to carry her supplies around with her, but "another time, I was in the middle of a university lecture when I felt the bag literally inflating with what can only be described as gas," she continues. "Even under a loose shirt, it was really noticeable, like you'd have thought I was going to float away carried by the thing, so I didn't want to jump up and draw attention to myself. So I just sat there praying I could get to the end of the lesson and make it to a bathroom before it popped. It actually burst as I got into the toilet cubicle, but luckily it was only full of air!"
And even more luckily, newer models offer a "burp" feature.
That's not the only reason you might smell bad, either. Because the adhesive comes off with water, showering becomes tricky. As a solution: "I showered every other day," Kayleigh says. "I'd first wash my hair and do all my soaping with the bag on, and then I'd take it off and just rinse with water and then dry everything and put a new bag on. Baths became out of the question, though. I tried a few times, but the adhesive came unstuck and the next thing I knew I was lying in a bath of ... you know ... liquid poo."
Then there's "the noises," Kayleigh continues.
"Oh god, the noises. You know the embarrassment (or not, if you don't embarrass that easily) if you accidentally break wind in front of people? I'm one of those people who gets mortified by that, so there were times when I was in class or whatever when my exposed intestine just starts gurgling and making various mortifying sounds. It's quite loud, and impossible to prevent or cover up. If Wiggles was making noise when I was in company, I'd instinctively slap my hands over it like you would if your stomach was rumbling," Kayleigh explains. "I'd usually just start coughing instead but you can't feel when the noise is coming most of the time so it was a bit difficult. Eventually I hit a point where if it was just loud and continuous, I'd make jokes about Wiggles being on the warpath." For a while, though, it was so embarrassing that "it made me not want to be around people, and I ended up losing a lot of weight because I ate a lot less to try and avoid it!"
As people who believe farts are tools to be used for both humor and warfare, that's some impressive commitment to polite society.
It Affects Your Life In So Many Little Ways
When most of us get dressed in the morning, the only question we have about our butts is whether or not they look big enough to warrant a rap song. Kayleigh had more pressing concerns.
"Clothes shopping is a nightmare!" she says. "Colostomy bags come in various sizes, but you can forget about wearing a fitted dress or a T-shirt if you don't want everyone to see the outline."
They don't make sexy belly-thongs.
"I didn't even think about wardrobe at first, because I was in hospital in PJs for about a month," Kayleigh explains. "It was only when I got home and people were coming over, and I was trying to make more of an effort to not look ill, and I went to chuck a T-shirt on, and went 'oh goddddddd', because you could just see the bag, and I couldn't get the shirt all the way over it! At that moment, I started frantically pulling everything that I owned out, and had to ditch most of it for either being too tight, or too short to cover the whole bag."
Her whole wardrobe had to be overhauled, "from fitted dresses and shirts to looser or baggy clothing," she says. "I bought a load of looser, longer shirts, and had to get some low-waisted jeans, because the high-waisted ones were just impossible."
As if it weren't bad enough to be an accident victim, she became a fashion victim as well.
It's a law of the universe that, once you think you've got this whole life thing figured out, someone will invite you to the beach, and ruin everything.
"I completely avoided swimwear, and never went to the beach again, sadly, though I know of other people who proudly showed off their colostomy bags along with their new bikinis!" Kayleigh says. "I wasn't that brave, though!"
Formal occasions were a bit more workable ... with a little creativity:
"Instead of wearing a fitted little black dress or something, I'd wear a dress that was fitted to the waist and then flared out," though she notes that "I swapped to stockings instead of tights because the waistband of the tights interfered with the bag too much."
You Won't Be Able To Eat Much Of Anything
When a large section of intestines is taken out of the picture, the ability to digest certain foods goes with it. Diet was just one more thing Kayleigh had to completely reconfigure.
"You'd be shocked by the amount of food you can't eat at all, or have to take 'great care' eating," she says. "You can't have steak unless you literally chew the meat to a pulp before you swallow it. You have to peel fruit, especially apples, because you can't swallow the skin. Nuts? Absolutely not! Hazelnut caramel chocolate bars were my favorite, so I was devastated!"
"The reason is because certain things can cause obstructions in (what you have left of) the bowel, because those are the bits that would get broken down in the bit of intestine that your food no longer reaches," she explains. "If you get a bowel obstruction, then you could be looking at another major operation to fix it." She notes that "this actually happened to me, but because of scar tissue and not tricky food."
When you cut out meat, fruit, nuts, and seeds, you're left with ... salad? Better hope you don't run into a renegade raisin. Bread? Not the healthy kind, with thick crust and seeds.
"You don't realize how many things have seeds and/or nuts until you're absolutely not allowed them, and then suddenly you see that they're in loads of things," Kayleigh says. That probably didn't help her weight loss -- you can't eat much if, well, you can't eat much -- but the embarrassment factor was a key consideration here, too, turning every meal into dietary calculus.
"I became very aware of what foods tended to get digested faster," Kayleigh says. "For me, if I was eating out anywhere, I completely avoided anything with gravy and most sauces, because otherwise the colostomy bag was prone to just suddenly ballooning."
She's just full of interesting food facts like that. Invite her to your parties!
Your Sex Life Becomes ... Complicated
Most of us won't even poop in the same house as a new sexual partner, from anywhere between the first several weeks to ever. Imagine having to do it in their face, depending on the position.
"I was lucky enough to have a serious, long-term partner when I first had the colostomy," Kayleigh says. "I felt really self-conscious about it for ages and wouldn't let him near me because I wasn't feeling sexy and I was worried about how it looked, and even though if all is sealed and done properly, you can't smell anything from it, I was still worried about his face being anywhere near it, so I wouldn't let him near it."
Once she got over that, the limitations were more technical, but by no means unworkable.
"After a few months of him insisting he didn't care and pointing out that were he the one with it, I wouldn't care, we had a go at some things!" she continues. "Missionary is a bit awkward because you can't really have someone's weight just lying on it, but then anything that involves going from behind on all fours is also risky because then the bag is sort of hanging and being affected by the ... erm ... movement! I found that me being on top was the most practical option."
When that relationship ended, Kayleigh had a whole new problem. You think Tinder is a drag now? Try putting "Just so you know, I poop from the front" on your profile.
However, Kayleigh found that new partners were shockingly cool with it: "In general, it was a lack of confidence that caused me problems and not the colostomy," she says. "I pretended to be super confident with everything with the next person I got involved with, and he couldn't get enough of me, and that turned into real confidence over time."
You Might Be Able To Poop Again Someday. It Will Be Weird.
Did you know colostomies can be reversed?
"Basically, I needed the colostomy in the first place because it was my large bowel that was damaged, so they fitted the stoma while it was healing, to take all pressure off digestion in that area," Kayleigh explains. "I was lucky that I wasn't so damaged that I healed well enough to have the reversal, otherwise it would have been permanent."
So now she's back to her normal-poopin' self. Well, mostly.
"That very first poop, after not pooping at all for like six months or something, that was really, really weird," she says. "Those poops were like teeny and white. They did warn me that might be the case, because it would be likely that there had just been some sitting in there the entire time, just waiting to come out and they'd like, I don't know, sort of crystallized?"
But it's one thing to be told that and quite another to see it staring out at you from the toilet.
Once she got over that initial shock, there was a new problem to contend with: "It was quite hard to go at all, for a couple of months, because I hadn't exercised those particular muscles in months, and had no abdominal strength because I was still recovering from all the surgery, so the struggle was something akin to Thor fighting Loki every time I went to bathroom."
"The only real difference that I've noticed since the reversal -- and I have absolutely no explanation for this -- is that I now have zero tolerance for alcohol," Kayleigh says. Before and after she had the colostomy, she drank like any other student -- that is to say, extremely well -- but since the reversal, she gets "absolutely smashed after half a glass of wine now, or if I stop drinking before even being drunk, I'm hungover for about three days after, so I just don't drink at all anymore -- because it's not worth it! I'm not sure that I can medically prove that's the reason, but I'm 100 percent sure that it's something to do with it, because this wasn't the case before!"
If we needed another reason to continue pooping from the designated hole, there it is.
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