Had a colostomy 10 months ago for rectal dysfunction (no IBD). But it just works like...crap. I'm sick all the time and ended up with a hernia.
Doc wants to use the same location but switch to an ileostomy? Also, due to the hernia, might have to switch sides.
Really hate to give up the convenience of the colostomy, virtually zero maintenance. Concerned about the added issues of an ileostomy.
i had a relation who had an ilieostomy and it was on the the right hand side also was more liquidy and theu also had a problem with low body salts due to food intake having a lot shorter intake than with a colonostomy or normal bowel function. this person had a sucessful reversal after six months. i do not see why you have a colonostomy in the first place when you think it is possible to have an ilieostomy . of course i am not a medical person so i guess their is some good reason. best wishs.patrick
do not recall their being extra maintainance for their ilieostomy apart from product coming through when pouch changing.
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Hi Michael, I think you and I have a lot in common, and I'm happy to give you my perspective. I was given a colostomy after my bowel perforated about two years ago. I had a long history of bowel dysfunction, basically my large bowel didn't work. It continued to be a nightmare after the colostomy and I had several blockages and then prolapses. My surgeon suggested an ileostomy, as it appeared that the dysfunction was in the large bowel. I was given a loop ileostomy, but at the same time, kept my colon intact with the colostomy stoma, just in case things didn't improve and they wanted to reverse it. Well, the ileo has been the answer for me and it's made my life so much better!! They recently did my final surgery to remove my large bowel and close up the old colostomy stoma. My ileo is on my right side and I just have a scar on my left. As far as the maintenance, I can honestly say, it's a piece of cake. I can control the consistency of my output just from the amount of fluid in my diet. I used to have to take boatloads of laxatives to make my stool really watery, or it wouldn't come out. Now my output is normal and I can adjust it just by drinking more or less water. I go six days between changing my appliance. It took a while to find the one that works best for me, but it's all good now. I don't even have to wear a barrier ring or anything to protect my skin. I know everyone's story is not going to be like mine, but I don't think you need to fear an ileostomy. It's also smaller and has a lower profile than my old stoma, so easier to hide under clothing. I also had started to develop a hernia with my old stoma, but now that area is closed and my new stoma is a much smaller hole, so less chance of developing a hernia. I'd be happy to answer any other questions. Take care,
Terry
Hi Terry,
Thanks so much for your post!
Our cases do seem really similar, so the perspective is priceless!
I too have to take tons of laxatives or get a cement mixer. So, I know exactly the hell you went through and I'm so glad this has worked so well for you!
Hi Michael, a couple of other things you might want to consider while making your decision whether to go through with the ileostomy. You may read and hear that people with an ileo have a more difficult time with diet, that they have to watch what they eat and are restricted from many things. This is true for some people, and they find they can't eat high fiber foods or other things that don't break down easily and may cause a blockage. What I have found from a couple of years of reading posts on this site and others, and from speaking to my ostomy nurse and surgeon, is that most people who have issues with diet are those with a history of Crohn's or colitis and have developed scarring. I have found that I can eat anything as long as I am careful to keep well hydrated, and chew my food really well. Because your history is so similar to mine, I would think that you shouldn't encounter any problems with diet either. You do need to keep your fluid intake up, and chewing well is also a must when eating certain foods. I did have one blockage, when I was becoming complacent for a while there, so I've learned my lesson!
If I were you, I'd ask my surgeon about getting a loop ileo to begin with, just so you can always reverse it if necessary. For me, there was no question of going back and my life improved 100% with the ileo. It's a pain to live with two stomas (although the colostomy stoma doesn't function and you only need to wear a stoma cap over it) but it's only for a while, and that way you know you are giving yourself every option there is.
Terry
I empty my ileo bag around 10 times per day. Before my surgery, I was pooping that much so no real change there. I get 6 days between changes and now after 2 years, I can eat anything I want. The frequency of emptying might be the only difference and you won't need any laxatives. Good luck!
