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An_252246 posted:
I have UC and am told that I have hundreds of pseudo polyps and need to have my colon removed and have a permanent colostomy. Can someone share their experience with a colostomy.
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miserable_sob responded:
Hi, I had a 90 day colostomy. My colon is missing now and my small intestine is supposedly doing the job that my large intestine once was. I've been unhappy with it for over 20 years now. If you're not bothered by the appearance of a colostomy, it is easier to live with than what I'm dealing with now. If I had to do it all over again though, I would have just kept my colon and took my chances. The end result of my surgery is one of the worst compromises I've ever had to put up with in my life.
 
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hannahleigh89 responded:
Well, first off, if you are having your entire colon removed, you will not have a colostomy, it will be an ileostomy. I had an ileostomy for 6 months and then had it reversed. It really isn't so bad, once you find the right appliance for your stoma. You need to try to keep an open mind and be willing to experiment a bit to find one that fits you and your stoma. It is going to be really frustrating and it's a very emotional time, but you can get through it. I still haven't gone through and gotten rid of all of my supplies because every time I start to, I end up crying so I stop.

Be prepared to have accidents. Not in the traditional sense because poop isn't coming out of your butt, but your bags will leak sometimes. Get used to sleeping on your back, lol. I have a lot of problems with gas still, and it was one of my biggest problems with the ileostomy. I eat too soon before going to bed, and I would digest and the gas would build up in the bag, and then I'd roll over on it and it'd pop. And there would be poop all over me. Which isn't as bad when you sleep by yourself but my boyfriend sleeps with me and it was always incredibly embarrassing, but he was a good sport about it. I expect that problem can be resolved by paying attention to when and what you eat, and perhaps taking Beano or something.

If you do end up with an ileostomy, I don't know if anyone has spoken to you about what you can expect as far as poop goes. One of the main differences between caring for a colostomy and an ileostomy is the poop. With a colostomy, you have part of your colon, so the excess water is absorbed and you will pass formed stools. With the ileostomy, this water is not absorbed, so you will have liquid stools or soft stools (resembling pudding) forever. The stoma (the part of your intestine that sticks through your skin) is also slightly different- usually a colostomy stoma is larger than an ileostomy stoma, The size depends on how large your intestine is. Mine was between the size of a quarter and a half dollar once the swelling went down. Colostomy stomas also can become clogged because of the formed stool- you have no sphincter or muscle control there to help force it out, so it must be able to come out on its own. So with a colostomy stoma, it may have to be irrigated. Ileostomy stomas do not have to be irrigated. They are more likely to develop irritation around the stoma because you are constantly passing liquid stools. This is why it's so important that your device fits your stoma well.

The nurses will tell you this, but they didn't tell me so I'm passing it along just in case. You'll need to change your bag in the morning. If you choose any other time of day to change it, you'll have more mess because your bowel is the least active in the morning. I always changed mine in the shower. I got a shower chair, and I would get all of my supplies laid out on the counter before I got in the shower. Then I would shower, and I would leave the bag on until I was finished showering. I would let the bag get wet when I'm preparing to remove it, and then I used adhesive remover wipes (you can order them from the pharmacy or the place you get your bags) and removed the bag. I would then place a damp, clean wash cloth over the stoma to help hold in some of the mess until I got the new bag on. This usually was executed flawlessly after I had some practice at it. In the beginning, it is helpful to have someone to help you get the bag on. I didn't want to look at it, much less deal with caring for my stoma, and my mother assisted me a lot with this. But it's better if you can change the bags without clothes on, because that way if there is a mess, you're already in the shower and can just wash it off. So it has to be someone you're comfortable with.

For me, after I had my colon removed, I was in so much less pain than I had been living with for years. You have to start slow, but then it seemed like I could eat whatever I wanted, which was new.
 
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hannahleigh89 replied to hannahleigh89's response:
I don't know if I'm even talking about what you needed to hear, but if I'm missing an important piece that you have questions about, feel free to post them and I'll try to answer them.

When I had my ileostomy, like I said at the end of the previous post (ran out of room so had to do another) I was in so much less pain than I had been in for years. And now that I've had it reversed, I have a lot more pain than I did when I had the ostomy, but I have Crohn's. I also had UC, which is why they took the whole colon, but I'm now living with inflamed small bowel, so my situation is a little bit different. But I loved the bag, once I adjusted. You can wear whatever clothes you want (you'll want to start with loose fitting clothes until you get used to the bag and the way your incision feels) and you can do anything that you can do now with a stoma. I was 20 when I had mine, and it was a very difficult age to have to deal with it, but you just have to try to have a sense of humor about it.

Your stoma will fart. You'll be in a room full of people eating quietly, and your stoma will fart. And everybody will know it was you. But you can either be mortified about it, avoid public situations, or you can laugh about it and move on. My stomach is still the loudest in the room, and I assume it always will be.

Antidepressants help. Pictures help. Being informed before the procedure of what to expect afterwards helps. Laying in that bed when you wake up and staring at the big, bloody lump sticking out of your stomach is an experience that you will never forget.

Support helps, which is why I'm here. Like I said, feel free to ask anything. I've got pictures of my bag and my stomach pre and post surgery that I'm willing to share if that will help. I've posted them on here somewhere already but who knows if they are still on here. Just let me know if there's anything I can do to help ease the transition. Once you get used to it, it really is not so bad. Like I said, I learned to love the bag. It gives you so much freedom in comparison to always having to worry about where you can poop next.


Oh! Another tip! Baby wipes. They should give you some squirt bottles to clean out your bag after you empty it. Ask for two or three. And then when you empty the contents, spray warm water up into the bag and kind of swish it around over your stoma to cleanse it. If you are in public and do not have a squirt bottle, empty it into the toilet and carry baby wipes to clean out the tail on the bag so that you can roll it back up easier. I carried one of those little travel cases of baby wipes in my purse. My family loved it because I always had one if they needed it, lol.
 
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mrsbeans replied to hannahleigh89's response:
Thank you so much for this great information. I can see that this is definitely a process that is part trial, part error and that a sense of humor is essential. I am struggling with the humor part. I still have so many questions abut living with this bag on the outside of my body. My husband and I love to entertain friends and family. I can't imagine farting in front of everyone all the time (or should I say the bag farting). And do you smell like poop? Who wants to be around that. What about intimate relations with hubby? I cant imagine that being very sexy - to say the least. I know that all of the things I'm worried about seem so superficial in the big picture but these are the things that keep coming to my mind. Also, how much time is spent, on average, every day dealing with the bag (changing, emptying, etc). Thankfully, my husband is my biggest cheer leader and doesn't care about any of this, as long as I'm still around.
 
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hannahleigh89 replied to mrsbeans's response:
"And do you smell like poop?" No ma'am. If your bag didn't have a good seal, you'd notice the leak way before you'd smell it. I never had an issue with smelling at all. They do make bags that have activated charcoal in them that will absorb the smell, and they also make a spray that you can squirt up into your bag, but I never had to use either.


"What about intimate relations with hubby?" This was an issue I was concerned about as well. Lucky for me I don't have a permanent one (yet) and most of the time I was recovering from surgeries, sex wasn't really on my mind all that often. If your husband is okay with it, it will be no big deal at all. It takes some adjusting to. But there are things out there to help you.
Option number one is a little bitty plug that goes over your stoma and holds the feces in. You can only use it short term, obviously, but you can put that on before sex and you won't have to have a bag on. You can also use it for swimming and things like that where it would be very difficult to wear a bag. I never used one so I don't know how well they work, but I know that the companies that sell the regular ostomy bags usually have several different options. It's just like a little cap over the part where you would normally connect a bag.

Option number two: check out the website ostomysecrets(dot)com. They make lingerie and other undergarments to help cover and support your bag. I bought a "classic wrap" from there and I used it somewhat frequently. If you wear dresses often or things like that, it's very good for supporting the bag and it helps to hide that you have one on. They make "intimacy" wraps and all kinds of things. It's a great website for that kind of stuff. I wore it for sometimes with jeans and it just kind of holds your bag next to you and keeps it from pulling at the securing device.


"Also, how much time is spent, on average, every day dealing with the bag (changing, emptying, etc)." I changed my bag every other day. On days I wasn't changing the bag, I would just shower like normal, with a bag on, and then dry the securing device and I used a blow dryer on cool to help dry it and make sure it didn't come loose. On days I was changing it, it added probably another 10 minutes to my shower routine to get the old one off, clean my stoma really well (use plain Dial soap and a very soft wash cloth, be sure to rinse well), and put the new one on. As far as emptying, it's sort of like having a bowel movement was for me, only less frequent at that point. I emptied mine every few hours normally, because I'd be in there peeing or something anyway. When you have to pee, it's pretty quick. You sit down like you normally would, and then I unclamped my bag and unrolled the tail down between my legs and emptied it into the toilet. Once I got most of it out, I would grab the tail with a baby wipe and hold it up, squirt warm water into the bag, swish it around over my stoma, and then lower it down and empty it into the toilet. Then quick clean up around the tail with a baby wipe and re-clamp. The whole process only takes a couple minutes. If you don't have to pee but you need to empty your bag, you can do it the same way but you still have to pull your pants down and sit on the toilet. Or, you can kind of kneel at the toilet or squat and empty it like that. Still only takes a couple minutes. Aside from changing the bag and emptying the bag, the only other real maintenance I can think of for it is burping. I don't know if I'm just weird and I have a lot of gas or what, but my bag would sort of balloon out there sometimes and it would hardly have any feces in it. So I would stand up and make sure all the feces is at the bottom and then I would kind of unclamp it from the securing device only at the top to let the air escape. Then you can pop it right bag on. It doesn't make a noise but it is smelly. Just make sure you know what's gas and what's poop. Or it'll pop out at you.


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