Permanent Illeostomy Output

I also have a ? for those that have chosen to go back to an end ileostomy.

I have abdominal pain that is due to IPS, which is like IBS, and adhesions/scar tissue. I'm thinking if I went to an end ileostomy it wouldn't help as I'd still have the adhesions and scar tissue.

Have you, or anyone else, continued to have the same abdominal pain that you had before going to an end ileostomy?

I've found that a bagel slows me down the best. Both with the loop ileo and with my j-pouch.

Thanks

I got rid of the pouch about three weeks ago and went to an permanent end ostomy. Mine so far is not quite as watery as the loop ileo. It has been watery a couple of times but I think it was probably something that I ate (hot wings). The doc told me that it should be about applesauce consistency. He did say that i could take immodium if i needed to. I don't really try to keep myself hydrated and I have not noticed any problems.

I don't think that I can answer the question about the scar tissue and obstructions. I do know that with my pouch I was having horrible cramps and running to the bathroom twenty times a day or more. All that is gone now and I don't feel sick anymore. I am emptying around six or seven times a day but it could probably be less. I just empty it when I get bored or have to pee I guess.

All in all going back to the bag has been good to me so far. No major complications and I was out of the hospital in five days. I eat what I want when I want and can leave the house pretty much any time I feel like it.

EThumb,

I'm glad you are doing so well with your end ileo and are not having the cramps/pain anymore. Thanks for your post.

Have had end ileo for about 3 months. I do not have a particularly high output. The output "substance" is variable, sometimes liquidy but mostly paste like. I dont really care as it goes in the bag. I haven't had trouble staying hydrated though I do sometimes use smart water or similar drinks when I am very active and sweating a lot. I am taking no drugs or thickeners of any kind. In general the output is similar to the J pouch. I slowly introduced pretty much every food I eat before J pouch surgery back into my diet and have had no problems with obstructions (didnt with the J either but diet was much more restricted with the J). I just try to chew well. The only pain I had with the J pouch was butt burn which was fairly bad of course that is gone. I have no pain or cramping with the end ileo

gmarie.. I gave you my "slow it down" program in a PM.

tough... scar tissue and adhesions.. may change with a perm. ileo. My surgeon did a major lysis of adhesions when he opened me up to rip out the jpouch. So he got rid of a lot, but I think more were created. I have found that exercise helps with pain from adhesions/scar tissue a lot. Seems to break up things somehow.

I wanted to add that when They did my end ileo I was insistent that they keep as much of the small bowel as possible (I had lost more then normal in the first J pouch surgery due to blood supply issues). This came up in pre surgical discussions. The easiest way to do what I had done (J pouch disconnect with end ileo) was to cut the bowel off near where it passes the future stoma location. By doing this I would have lost about another 1.5 ft of intestine. I was insistent on disconnect at the pouch and bringing that disconnected end through the abdominal wall to create the stoma. The surgeon agreed to do this even though due to adhesions the surgery took a lot longer.

Thanks Liz11

chiromancer, I didn't realize they wasted any of the small intestine . With the potential of short gut syndrome you'd think they'd do anything they could to save as much as possible. If I ever need this surgery I'm going to make sure and discuss this with them too. Thanks

quote:

you'd think they'd do anything they could to save as much as possible.

One would think so, but who knows what goes on when we are under the knife. This came up when I asked specifically how he was going to perform the disconnect as I had just assumed it would be disconnected at the J pouch. Honestly I was shocked when he told me how he was planning on doing it. For most people 1.5 ft of small bowel may have little effect but you keep adding up all these surgeries and pretty soon you have, if not short bowel syn., very liquid output which is harder to deal with in a pouching system and makes staying hydrated more difficult. From what I have read we don't all have the same amount/length of intestine so that is one variable which may explain why some people have more trouble staying hydrated after these surgeries than others. Additionally, one never knows if the "current" surgery is the last surgery.

Precisely! We all need to keep this the back of our minds. Some people get new pouches built, some go to K or BCIR (? spelling), and some of us end up with crohns. I think they should keep every bit of the small intestine they can!