I can partially answer that question. I have not yet but am on my way to getting rid of my j-pouch (Oct of this year, fingers crossed.) I've had it for three and a half years, first six months were hell, next two years were manageable on and off. Six months ago (3 years with pouch) I decided enough. I was tired of not participating in my own life and the decision to say bye to the pouch was an "A-ha" moment. I'll know the answers to your questions in about four months, but I'm sure you'll get replies from those who have the answers really soon. Good luck with your decision.

15 years--way too long. I wish I had done it sooner. My health return after the construction of my permanent ileostomy.

Caty

Hi

I had my jpouch for 18 years - I was 15 years old at the time.

I had my perm ileo done Oct 2013 after way too long of putting up with chronic pouchitis, anal spasms, strictures, etc and feel wonderful now. Should have done this sooner!

I have ZERO regret with going perm ileo.

I swim, hot tub, workout 5 days a week and sweat like crazy, sometimes shower twice a day. I have never had a leak, found a system that works great for me and my sensitive skin.

Hope this helps!

I looked at ileo before as a hassle, but after 1.5 years of nothing but problems with my j-pouch, multiple hospital trips for cuffitis swelling so much it blocks me up, had a mucosectomy and all and though im in a better spot now then i was before the mucosectomy i still go to the bathroom alot and have the spasms a good deal of the time. my surgeon has said if im not doing better soon than she wants to give me a temporary ileostomy and let everything else rest but im looking at it now like maybe we should just go perm, i feel like i would be able to have more freedom, alot more than i do now feeling like im tethered to being home where im comfortable know where the bathroom is.

What are these spasms? My pouch is 18 years old and for the past 6 or 7 months I have been getting rectal spasms. But WHY? Do you have a diagnosis from your doctor? I was found to have slight inflammation and am taking something for that, but it hardly helps the spasms. Didn't get an answer from my surgeon as to what causes the spasms. Maybe need to see my GI. But maybe people here have answers? Can they be cured or treated. It is all that is wrong with my pouch. Is it old age?
C-jay

the spasms i know and refer to as spasms are when im done emptying its like my pouch says "nope, theres still stool, i have the feeling of pushing with nothing coming out" they prescribed me dyclomine otherwise known as bentyl to help with it, noticed a small impprovement. I have inflammation as well and i take entocort for it.

I can't get my Drs to remove my troubled pouch. Look at my signature. How does one get a surgeon to remove it? My GI told me that she dos not know what to do for me anymore and yet the pouch only has mild pouchitis and she will not recommend removing it? My surgeon also agrees yet I'm doing so poorly and nothing is managing the diareah these days.

If she doesn't know what to do for you but won't refer you for surgery, perhaps it's time to find a new doctor. You've clearly tried many options and are still miserable. Does she have medical reservations based on your individual case or is it an issue of cost?

I won't attempt to list my multiple surgeries that got me to where I am now! I will say as a member of the medical community that it sounds as if some need to find a colorectal surgeon that can give you the answers that you deserve. I have had my JPouch since 2008. A few takedowns and now permanent pouch since 2009. yes, I have the same problems many of you do, and there are days I have to make myself get out of the bed because I have been up all night going to the bathroom. But when I look back at what I ate the evening before or maybe it was a stressful day, it seems to be the answer. The best thing I ever did though was start with a great colo-rectal guy. He can't keep me from having pouchitis, etc, but he has been a saving grace thru most of the problems. I currently take Lomotil/Atropine 2 before each meal and 2 at bedtime, Cipro 500 twice daily when I have a flareup, and Desipramine for the rectal pain. I beg you to please seek out a good dr before you throw in the towel. I have contemplated the permanent reversal at times too, but when I look back at how hard it was for me to stay hydrated because of the high output, the skin excoriation, etc...it would have to be really bad for me to convert back. I think everyone should do what works best for you. If I have learned one thing since all this started is you know your body better than ANYONE!!!
My colo-rectal surgeon is in New Orleans, he was in Atlanta at the time of my original surgery. I make the trek to wherever he is to get scoped and he has given me his cell number and he emails me if I have a problem. That is worth it's weight in gold. Find a doc that has that type of relationship with you. Also, Coloplast has lots of new products out if you decide to reverse. They still send me info and samples! LOL Good luck to all in whatever you decide...we are def a different breed!

I had my jpouch just shy of 15 years. I loved my jpouch, but hated the cuffitis and fistulas. After hanging in there for a very long time, I finally gave in to the perm. ileo. this April. It's only been two months, but so far I'm doing really well. I swim without a problem and haven't experienced any leaks (yet) in general.

I am happy for the change and hope and pray this was my final surgery (I've had 22).

Laura

I had the same question! It's weirdly reassuring that others have had similar complications as me and have had success reversing their pouch. I have a new GI and I've expressed my intention to opt off this wild jpouch ride if we can't seem to handle the high output, pain, rectal spasms, fissures, strictures and general feeling like crap (punny!) I feel like I have UC again, a slave to the toilet. And the spasms are terrible, hard to fully participate in my family's life as I always feel like I need to rush to the bathroom. Imuran is a no go, so nauseating...I'll try a bit more but my patience is worn thin.

A more direct question, do they undo the j pouch and retain the small intestine? Or do they excise the pouch?

Thanks

They can reuse the pouch in some cases if you are converting to a continent ileostomy. Otherwise, no it is not used for an end ileostomy.

That said, they can leave the pouch in place, closing it off as a blind end, in the hope that defunctioning it will restore your health. But, you will still need periodic scopes of it. The other option is complete removal, which is a major, major operation. Most are quite happy with the choice, even if there are complications, because the j-pouch was just not working out.

Jan

Thank you, Jan. The surgery sounds major...I'll keep trying things with my new GI, for a while at least. I'm feeling optimistic today bc I've had a couple good days in a row, miracle of miracles! Best to you

Hi, I won't go into details about the issues I've had with a pouch in the last four years. I can tell you I now have a loop ileostomy and meeting with Dr. Remzi at CC later this year to discuss pouch revision to give the pouch another go.

Since March I've had the loop ileostomy while we wait for things to heal up and give me a healthg break. It has worked extremely well. I have gained 20 pounds and FULLY enjoy a pretty active lifestyle; including swimming (pool and salt-water ocean), biking, working around the yard, home car mechanics, running around with a 7-year-old boy and, yes, sweating. I have an insatiable appetite (need to be careful now!). I have put on pretty good weight, muscle tone here and there. While the loop has given me a normal life, I realize an end ileo might make the maintenance even easier.

Having said all that, I feel so good I *may* have built up my confidence, strength and nerve to have the "best" J-pouch revision surgeon in the world, Dr. Remzi, give the pouch another go. A point in the "do it" column includes the fact that I feel great on the ileo and could easily make the decision down the road to return if there were complications.

Bottom line, a ileostomy is underrated as a very effective way to significantly increase quality of life for many, many people. Best wishes!

lovely post aka. I too got disconnected initially by remzi so I could regain my health. and what a world of difference it was. no big deal that bag when you can go out and live your life. My choice in the end was to go permanant ileo though.. as I thought my body had just been through enough. Either way, either choice.. its nice how you wrote your last sentence. and blessings to dr. remzi for helping yet another messed up jpoucher!

Thanks for your input, Liz.

Hi there! Having an ileo is not an issue for me because I had one for 4 yrs between steps one and two. I almost died after developing toxic megacolon and peritonitis/septicaemia so I was too scared to go ahead with step two. I found it really easy and LIVED a very full life, going to nursing school and starting practise in emergency nursing. But I thought I'd give a j pouch a try, I was only 30 and I knew I'd regret not giving it a shot. I was able to get pregnant twice and I am so lucky to have my two gorgeous kids. But I need to keep up with them which has been a real challenge as my pouch has been pretty troublesome this past year especially.

Wow, good luck with dr. Rezni! You are really fortunate to see him and to go to CC. You never know, maybe he can fix you up

Wishing you the best!

Oops, I mean Dr. Remzi!

KNKL,

I agree with you that the quality of life with an ileo is underrated. I suffered with a j-pouch for 18 years. I was on the toilet way too many times and the BB was just terrible along with incontinence. My sphincter muscles were badly injured at the time of the colectomy so there was no way I was going to get any improvement of my situation. I hung on way too long.

I went in for a Kock Pouch last Oct and woke up with an ileostomy. I was shocked and depressed and angry since there was never any discussion that this could be a possibility. There was so much scar tissue that the doctor said it was too dangerous to proceed with the KP. He said to wait a year to heal up and then go to the Cleveland Clinic where they are equipped to do complicated surgeries. Fast forward 9 months - I am doing quite well, like you, but need to come to terms on whether to tackle a huge surgery with removal of a J and creation of a Kock. I am fearful that this could be something I regret if it did not work out and cause huge problems for me. So right now I am struggling with this huge decision "to do or not to do." Like I said, I am feeling well and am active. I do empty a lot per day and I am assuming it is because it is a loop ileo and not an end. Another issue I have is the mucous and stool coming out of my J. I constantly have to wear protection and sometimes there is a lot of stool coming out which is such a hassle. This is not a perfect situation but I have adjusted. I would actually love not having an appliance but I don't know if it is worth the risk. I do need to make a decision one way or another but just cannot seem to make that choice.

Any comments or advice would be appreciated.

Donna

Thanks, Donna. So thankful for the forum and nice to know others with similar issues! I guess one question I might have now that I read so much here: Is it less of a surgery to revise a pouch OR remove it? I've read that removing is such a major surgery ... maybe easier to give the JP another shot, anyway?