Surgery happening on March 5th...would like some input, J-Pouch vs Ileo questions inside

Have been a member for a little while, just now making it back in from only what i can presume was denial at what was going on and what needed to be done...but it has to happen now so I'm trying to just deal with it. have been reading alot of threads..both here and on J-pouch.org.

Leaking...it looks like there is leaking associated with both J-Pouch and the Ileo-ostomy. With the Ileo i have read where it comes from your butt still...does that go away? I read on two occasions where a person was told they were to where diapers the rest of their life...and the leaking with J-pouch is that ALWAYS a problem or will that go away with Kegal and adaptation from your body.

Ileo- How long can you wear a single bag for? i know that probably depends on if you ate anything..when it fills up etc...i guess I'm talking more about that adhesive bandage that you cut to fit..how long does that last? is it different depending on brand?

Sleeping with Ileo...is it harder to find a position to sleep..i love sleep...i literally enjoy it..but im worried about the bag becoming disconnected while sleeping and sleeping in Poo..

Ileo - Gas!! what is that like? do you have to burp the bag by disconnecting it or do they make ones that will let it out?

If you couldnt already tell I'm leaning towards the Ileo because I'm scared of the embarrasing complications and the sick feeling of pouchitis...etc..with the J-Pouch..that and it looks likes alot of people that have had the j-pouch end up getting the Ileo later on, be it a couple of months, couple of years or 30 years..etc.

How expensive is it with the Ileo to maintain? Me and my girlfriend just bought a house together and are closing on Monday..my job is part time (which helps with exhaustion and frustrating days) but I'm eager to get back in school and be able to focus on it, but until then we will live on a budget and i want to make sure i account for the expense.

With the ileo leaking is usually a case of user error and once you get a good system going you shouldn't have that many problems.
How long your wafer lasts depends on a lot of things. At first mine didn't last but a few days, but as I've gotten better I'm getting 7 days out of it.
How often you have to empty will depend on what and how much you eat. At first it will be much more often though. The bags are drainable, you don't change each time.
Gas feels like gas, although I don't get it as much, unless I get hungry. Again, at first, you will have more problems with gas. You can burp the bag, I personally don't, I made a mess one time and quit doing it! They have filtters, but they don't work.

Suebear – as I was reading there was a lot of j-pouchers that after talking about their complications state they went back to a bag, I noticed a lot of that as I was reading, both from their post and from some peoples Sigs. I have been tested for Crohns and supposedly don’t have it so hears hoping that I truly don’t. the diapers thing is a relief...I guess im worried know about my doctor not being up to par..he has made it clear he prefers the Ileo over the J-pouch…although he says he can do either and has done many.
I realize that while the sites are here for those to speak out their problems and find solutions it’s the fact that these problems happen and that im trying to find that one that suits me more. (though I wish it was neither) such a hard thing to choose.
My doctor says that all of the inflammation is down near the end of my rectum, and since that portion has to be retained for the J-pouch he says I could still have many problems.
Suebear – how soon did it take for your bowel movements to drop to 4ish? And how soon were you able to sleep through the night?

Summerstorm – The leaking I was more worried about was the Mucus still coming from the butt that they say is normal..i have read a few times where this has continued but if your saying they they eventually sew up the rectum then that’s a relief (I guess) if I chose the Ileo. ..does it get expensive always having to make sure you have supplies?

Is the doctor who is recommending an ileo, your GI? If so, he's not qualified to make a surgical decision.

Sue

It only burned while the wound was healing. And after that it was just really itchy for a while.
My surgeon said he would do a jpouch also, and he has done lots of them, but when I flat out asked for an ileo, he said if it was his family, that would be what he would want for them.

     I was not a candidate for j-pouch due to several other health issues.  Like you too...my disease was located in the rectum.  Maybe that does have something to do with the decision of the surgeon recommending an end ileo.  It really didn't matter to me, I just knew something had to be done.  My quality of life was going downhill fast.

     I have never had a problem with leakage of the ileo.  Do you mean waste coming out underneath the bag?  You just have to make sure the opening of your seal fits closely around the stoma.

     My surgeon does not sew the anus closed with the end ileo.  I suppose he has his reasons.  I do have mucus which seems to me to be coming out my vagina.  This happens from time to time.  I had a thorough GYN exam, including a transvaginal ultrasound and everything is fine.  I think my surgeon feels that it is better the mucus comes out than be trapped inside..who knows?  All I can say is he did a terrific job, I never had a blockage in my stoma and I am as happy as a lark!

Christine - I am talking with a different surgeon at the same hospital to see if she will go over my chart and tell me what im looking at. i would hate to have the J--Pouch surgery and have nothing but complications because of my disease likeing that area more. Interesting about the mucus and them not sewing up the anus..makes sense i guess

Mrs. Bugzy - alot of that sound scary and no offense but i hope if i have the J-pouch its smoother than that lol. I already "dissect" my finished product but rarely do i take away any information from it..i'm stubborn with changing my food ways. the leaking when you step up real high and what not..is it alot? or manageable..

I had UC, went throught the 3step jpouch surgery. And the jpouch failed miserably. My life with the jpouch was worse than any day with UC. I had to go through two additional major surgeries and I now have a permanant ileostomy.

Please don't let surgeons sway you one way or another. It is your choice. Going for a jpouch involves more surgeries than going straight for an end ileostomy. And each surgery means more risks. With a jpouch Ppouchitis is almost guaranteed to happen at some point. But for most antibiotics will take care of it. For some, they must spend their lives on antibiotics. Also most jpouchers seem to have to pay a lot of attention to what they eat. If you go to an ileo you have to learn how to manage it and live with it. For most, that becomes non-issues. Most people with ileostomies can eat virtually anything they want and live full and very active lives.

Also most people with UC have disease in their rectum. That's where it usually starts. So.. the risk with jpouches is that a tiny bit of rectum is left, which can stay or become diseased with cuffitis, that is basically just like UC. Generally this is treatable. But they are now finding there are refractory cases of cuffitis which is terribly problematic for those patients.

good luck in thinking through your decision.

Dgtracy,

This dood seems to do quite well with a j pouch

http://www.youtube.com/watch?v=EDoujZ1K8ww

Plus a J pouch brings someone to the closest to normal. Unless...you view a pouch stuck to the stomach as normal, if that is the case, then it's "your" normal.

You know, I read and re-read many things about j pouches and bags and stuff and you have to stop and wonder. What is the point of making these advanced procedures if we're not going to try them and go directly to old 1950s type of surgeries because we're too scared the NEW type of surgeries might not work.

Sure, the J pouch might fail, but we should at least try.

what is the different between a loop ileo and an end ileo

As other said, it really is your decision. For me it was fairly easy because although I'm technically indeterminate, it's more likely that I have Crohn's, and my gi was clear that I was at higher risk of a failed j pouch, plus my hospital (Mass General) wouldn't even do one on me. Also, I didn't care about being "normal." I wanted to have one surgery and be done, although I had a complication which required a second surgery, no guarantees.

It is good to remember than in any internet forum, people with complications are likely to be over represented, just keep that in mind.

You are doing the right thing asking a lot of questions and learning a lot about both things.... hopefully at some point the decision will feel clear. In terms of surgery itself, I was adamantly opposed for years until all of a sudden I became so clear that I almost didn't trust it (the first question I asked here was about whether people had a moment where they just said, "I'm done;" a lot of us did) .... and I have remained clear since.

Best of luck.

I want to reiterate what RDM said :
"Everyone says "you can always return to an end ileo if the J pouch fails." that is what I considered in going for the J pouch While this is true they never tell you how difficult of a surgery(s) it is to remove the J pouch with a lot of potential complications."

My jpouch excision surgery was over six hours and involved a 27day long hospital day with blood transfusions, abscess drainages, infections of all sorts, tpn, and nearly one year later still ongoing EUA surgeries for wound healing problems. This surgery was already after three surgeries for a jpouch, and another one to disconnect the jpouch. A lot of unncessary trauma to the body had I just stayed with an end ileostomy and never had a jpouch.

so please... whatever you do.. do not think you can "try" the jpouch and if it doesn't work just return to an end ileostomy. Its a whole lot more complicated than that.

dgtracy:

This website is great...it helped me through a lot of mental issues with the bag......

Someone on here mentioned being "hairy.." Well, that I am...i had thought about getting laser hair removal prior to surgery, but time ran out...LOL! I may still get it anyway!

As far as your decision, I don't know how old you are, but if you are young, and in good health (other than UC), and you want to give the j-pouch a try, your body should be able to deal with it..by the way, you will know what it's like with a bag, cause you'll need to wear one for a few months prior to getting your "take-down" as they call it.

I can tell you that two surgeons recommended me for a j-pouch, but after 7 years straight on prednisone, there would be no way I could handle 3 surgeries (it would have taken 3 for me because I was too week for the 'two-step'). So, i opted for the permanent ileo..and, after having taken 18 months to get over that surgery, I would not have been ready for another one.

You need to determine how your really physically feel, and also which disease do you actually have - UC or Chron's??

Whatever the choice, please keep us informed and ask for help when needed.

God Bless and best regards,
jimmy