hi all..i have jpouch and after many years of ups and downs i have decided for temp ileo..i was adviced by my surgeon more easyer surgery than perm ostomy and risks are not as bad..i like to hear anyone has temp ileo..pros and cons..i would rather keep temp ileo rest of life than have complications with perm ostomy..i was told by surgeon i could have man problems which put me right off..so went down temp ileo path..please i would like hear from people who had temp ileo there experiences etc..thank you

Kieran,
Why are you having to have a temp ostomy? Are you having problems with your pouch that will correct itself with a temp? So is this just for a short time and you can be re-connected later?

I have a temporary loop ileostomy while waiting on my 3rd step surgery. I had a temporary end ileostomy after my 1st step (which they use for permanent) and would choose the end over the loop in a heartbeat.

I suggest you read this thread as I think similar questions were asked and answered. Tough decision to be sure. But if you are talking about a loop ileostomy, I think you are probably asking for trouble in the long run.

http://j-pouch.org/eve/forums/a/tpc/f/3351071921/m/4931034672

Jan

hi,
i having temp ileo because thats what surgeon suggested and risks are less than perm ostomy...i just had enough of living in loo..i have had j pouch many years up and downs..i was told if i change my mind i can have it reversed back to j pouch..also i was told i have temp ileo as long as want or rest my life..he didnt mention anything about risks or problems..i am not sure about if end or loop temp ileo..will have to ask stoma nurse or surgeon ..Operation 1 May...

Qs..to u get blockages..?..can eat what u like.?..some little mucas comes out is that just temp not regular and dispears...feeling wanting to go..fades also?...

Kieran,
An additional resource is www.uoaa.org and click on discussion. Another great place for answers

I have an end ileo that I would call "permanent" because I had my pouch removed and anal area sewn shut - otherwise, I would just use the terms loop or end to avoid confusion. However, you can get an end ileo and just disconnect the pouch because I tried that before having the pouch out. If you are planning on the ileo long term, which it sounds like you are, you definitely want to get an end ileo.

I eat anything I want, take no drugs, sleep through the night, have been traveling, kayaking, had one baby and am about to have a second. For me the ileo and pouch removal has been fantastic. Many people can just disconnec tthe pouch as has been suggested to you, but I was one of the (supposedly) rare people who actually got worse with disconnect. It wasn't until my pouch came out that things really improved.

Given the great difference in the surgeries, though, it is certainly worth trying a disconnect first if you are comfortable with that.

Due to FAP, my husband had ileostomy placement in June, 1993. He has had no problems since then. He does anything he wants and eats anything he wants. This has not slowed him down at all.

Also due to FAP, my 7 y/o had J-pouch in May, 2007 with take down July, 2007. He has had 4 dilitation surgeries since then. He still suffers from incontinence. During the time that he had his temporary ileostomy, he was able to so everything for himself except change his bag (I did that). I don’t think he would have had much trouble learning to do that either though. I have seriously considered talking with the doctor about reversing the procedure.

I have had a loop ostomy for 8 years and have had no major problems at all with it. I know I am one of the lucky ones, since loops tend to give people more problems.

thank all for your advice...not sure what FAB IS...I am abit worried if i have temp ileo about leeks cause my job involves alot lifting and bending etc...i work in store..i have heard on this site about support belts..maybe that will stop any accidents from happening..not sure..worried like hell..

FAP stands for familial adenomatous polyposis. It is a heriditary condition where hundred to thousands of polyps form in the large intestine. There is a 100% chance of cancer without removal. People with FAP are 50% more likely to develop cancer somewhere else. It is very scary since my husband and son both have this.

My husband wears a support belt with his ostomy and when my son had his, I bought a belt for him too. They really work well for times where there is stool and/or liquid in the bag.

This message has been edited. Last edited by: lawgirls69,

I have had an end ileo and currently have a temp ileo as I await my takedown in April. I had the end ileo for 2 and a half years and the temp for about 3 months. Comparing the two, the end ileo was MUCH easier to deal with simply because it was much less active than my temo ileo. I used to be able to sleep through the night with the end and now I get up 2-3 times a night just to empty my bag. Also, when I eat food now, within minutes of eating it it comes out into my bag (I can feel the food going from my mouth to my bag within 5 minutes sometimes). This means I'm emptying almost constantly and it brings up a whole new set of issues such as hunger and nutrients. I am ALWAYS hungry and I feel stupid and tired all the time because nothing is staying in my body long enough to give me the nutrients I need. I am almost constantly dehydrated as well. I did not have these problems with the end ileostomy.