10 Questions

Ten Questions You Always Wanted to Ask Someone with a Colostomy Bag

"I've never farted."
January 11, 2017, 1:38pm

This article originally appeared on VICE Denmark.

There are an estimated 500,000 people with permanent colostomies in the US. A permanent colostomy is a procedure where an end of the intestine is diverted out of the body through a hole in the belly. Which means that, from then on, your shit won't go through your rectum and your anus any more, but straight into a bag attached to that hole.

Because people quickly get weird or giggly when conversation turns to colostomy bags (or to poop in general) I got in touch with Katrine Nielsen to learn more about living life with a little brown bag. She's 23, currently studying to become a nurse, and she's had a colostomy bag for as long as she can remember.

VICE: How long have you had a colostomy bag?
Katrine Nielsen: I had my first colostomy bag when I was six months old, so I've basically had it my entire life. I would be dead without it. I suffer from a gastrointestinal disease called Hirschsprung's. My bowel is missing some nerve cells, which means it doesn't have peristaltic ability and poo isn't worked out in my bowels naturally. To deal with that, I have a permanent colostomy bag. At some point I could have had an operation, but I didn't want one. A friend of mine had one and was forced to wear a diaper for a long time after surgery. That's not a very enticing prospect. In 2010, my rectum was removed, because it turned out to be afflicted as well. That means that end is completely sealed off and a surgery that would free me from the colostomy bag is off the table.

When you meet new people, do you feel you have to tell them about the bag?
It's not exactly the first thing I tell people, because I don't feel it's the most important thing about me. Whether I tell people or not really depends on the situation. At school, it was important to share it right off the bat because my stomach gets pretty loud when I've eaten something. But it's always something to consider—if I share it with someone who knows nothing about it, they walk on eggshells around me. They'll ask if I'm able to cope with the most basic things, and I don't need that in my life.

So if you're out and you meet someone you're attracted to, are you ever afraid of scaring them off?
It's always in the back of my head—when is the right time to say something, if it's just for one night? There was one time I didn't say anything and just decided to take a chance and see what happened. That turned out fine—he didn't notice. I have a very uneven stomach because of all the scars from operations, and that can come as a bit of a shock. Usually I'll share the fact that I have a colostomy bag before anything happens, even though it can be a bit of a mood killer. If they accept it—great. If not, I just have to live with that.

Do you feel sexy with a bag hanging from your stomach?
I feel I don't exactly have the world's sexiest belly. I didn't show it off back when everyone was wearing crop-tops, but I highlighted other parts of myself by wearing low-cut shirts instead. That way, the bag on my stomach became a minor detail. But I've always been open about it, so most people just calmly find a way to deal with it. I haven't really had negative experiences with people. And there isn't any reason I should have—my bag has never fallen off, or anything.

How do you feel about the fact that there are people out there who have a fetish for colostomy openings?
I don't know anyone who's had an experience with it, but I've read it's a thing. Why anyone would want to fuck a colostomy opening is truly beyond me. And I have no clue how it would work—the hole is less than half an inch in diameter, and there's a small, red piece of intestine sticking out of the stomach. Most people are very sensitive about their opening; some pass out just from having a stomach tube inserted, even though you can't feel anything. So having something way bigger rammed in there—no, thanks.

What's the toughest thing about life with a colostomy bag?
The hardest thing is constantly having to be hyper-aware of what I eat and drink. My small intestine digests very little, which means I have trouble getting enough salt and sometimes have very low blood pressure. Things that are actually good for me are quite the opposite of what's prescribed in a modern healthy diet—potatoes, pasta, white bread. That's food that can absorb and doesn't fray or clump together. Raw fruit and veg are some of the worst things for me to eat. I don't digest much of what I eat, so I have a hard time gaining weight. Some people might see that as an advantage, but it also makes it hard to get enough nutrients out of what I eat.

Does your poo drop into the bag on its own, or do you have to push to get it out?
It comes out all on its own. Fecal incontinence, it's called. I have absolutely no control over it. When I've eaten things that I can't digest, nothing comes out. I'm able to alleviate that by using my ab muscles, going for walks, that kind of thing. It's sort of like bowel obstruction, except the intestines just stop working entirely. When that happens, some people choose to go to hospital to have their intestines flushed, but I just deal with it at home. You pick up a few tricks along the way. When I lived with my parents, I had to circle around the living room 109 times to get my system going again.

Read: 10 Questions You Always Wanted to Ask a Person With Breast Implants

How often do you have to empty out the bag?
That depends on what type you have. If you have one in the large intestine, it's almost like using the bathroom normally. You rinse it in the morning and empty out the intestine, and then you can carry a little bag all day without having to use the bathroom. But with my type of ostomy, it only takes around half an hour after I've eaten for the bag to start to fill, and I usually empty it out once an hour. I also just like having an empty bag—some people don't mind walking around with something in it. But if their bag starts to leak or they don't empty or change it often enough, those people start to smell. It's more of a hygiene issue, really—people without colostomy bags who just don't shower smell, too. If you just care for the bag well, it's fine. Leaks in the bag can happen, though. My type of bag needs to be changed frequently, which means I have to get up several times a night. When I don't and the bag fills up too far, it'll start to leak, and I have to change the sheets in the middle of the night. It happens a few times a year—my boyfriend is pretty cool about it.

How has living with a colostomy bag affected the way you see your own body?
I've often thought about what my body would look like without all of those lines, scars, and the bag. I have no idea; I've always had them. And there are bodily things I've just never done. Sometimes people ask me: "You know that feeling when you really have to fart?" No, I don't. I've never farted. Once in school, my teacher was talking about pelvic exercises and said that you just had to push like you were going to the bathroom. I have absolutely no idea how to do that; I've never used those muscles.

Do you think people who get a colostomy bag later in life have a harder time dealing with it?
Yes. I've been a member of the ostomy society COPA my entire life, and I meet a lot of people who suddenly get it as teenagers. It breaks some people completely—it's the worst thing that's ever happened to them. I sometimes find it hard to talk to someone with such a negative attitude toward something I owe my life to. They don't say anything explicitly hurtful to me, but I can sense it.

When I was younger, I had a hard time going to public swimming pools. People would stare and whisper. But sometimes we'd go to Lalandia [a Danish water park chain] with COPA, and we would fill an entire row of showers with people who have bags on their bellies. We'd have a great time. One time, one girl in our group completely freaked out about it. She refused to shower with the rest of us and was so disgusted by it—even though she had a colostomy bag herself. That's why there are so few young people in the organization. A lot of young people with this affliction cower in a dark corner and hide it instead of getting out and enjoying life. I just thought it was awesome that we could show how many we were, and that this shit really isn't that weird.