Hi all,
I am thinking of getting rid of my J Pouch and going back to an Illeostomy, however I have a few concerns/questions.
Firstly a bit of history on myself, due to UC I had to have an Illeostomy back in 2002. My UC was not too bad, but had a terrible flare up while travelling through Asia. My girlfriend and I were off to Australia for a year but I ended up in hospital in Singapore and had to return to Ireland for surgery. Had a complication about 4 days after my 1st surgery and had to have another op.(Still ensure what for as I was so weak and out of it at the time)
Had no issues really with the Illeostomy but in Jan 2005 I decided to go for the J Pouch. This was done over 2 steps but got complications again and had to have another op for an adhesion. In total 5 ops done so really don't want any more but I may have to.
Since having the pouch I have had all the usual symptoms, butt burn, internal itch and now treating for cuffitis. This flares up approx every week and recently been taken Melamazine but still no let up. Lately I have been thinking of going back to the Illeostomy.
I was looking for some advice;

1) How long is the surgery and would like to hear from people who have reversed back.
2) I believe some people have got the Illeostomy but kept their J Pouch?
3) One of my main concerns is nerve damage, I recently got married last New Years Eve and I am sure over the next few years may look to start a family. The last thing I need is further complications. My wife has been with me every step of the way on this and I know will continue to support me whatever this throws at us, but I really don't want to put her through any more than I already have.
Any advice from you guys regards this would be great!
Thanks, Keane

Well, I'm not a man but did have the pouch removed. At first it was left in and I had an end ileo created, but I continued to have pouchitis (which was my issue) and developed additional issues. But lots of folks have left the pouch in and haven't had issues. I guess the question is do you ever plan to go back to it? If you think that's even a remote possibility, then keep it. If not, I think you are better off getting it out, though perhaps you would want to stage it so as to protect as much as possible around nerve damage. You might also look at doing some sperm donations just in case.

The disconnect and creation of an ileo (so leaving the pouch in) is a relatively easy surgery, much like takedown without the unpleasant bathroom stuff. Surgery is about 45 minutes, 3-5 days in the hospital. Total recovery time 1-2 months.

The pouch removal is a much bigger surgery, usually takes between 3-5 hours and you want to be sure you have a surgeon who has done it before as it is very tricky technically. 5-7 days in the hospital, your tush is sewn shut so you have stitches in your backside for about 10 days (that was the hardest part for me), and it takes about 4-6 months to get back to "normal"

All that said, SOOO happy I had my pouch out. It was 7 years ago this month and since the removal I've had two beautiful children and done all the things I've wanted to do. No drugs, no diet restrictions, etc...

Hope you don't mind I jumped in on the Men's board, and I can't add much on that front except to say that my Dad has nerve damage from prostate cancer surgery and I understand how difficult that can be and what a concern it must be for you...

Please let me know if you have questions...

PS - my mother in law is from outside Ballinasloe Galway and my father in law is from Blacklion Cavan. I've been to Ireland once and it is truly remarkable...can't wait till the kids are old enough for a return trip.

Thanks a lot Jill. The advice is really helpful.
Just made an appointment with my surgeon for Wed 5th May so I'll be talking through the op with him then. More I'm thinking of it my main issue is certainly around the issue of nerve damage, last thing I want, but I need to do something as so sore, and tired.
Thanks again!!

Hi Keane....

I am a 36 year old female with a 6 month old permanent end/loop ostomy.

I also apologize for jumping in on the mens forum.

My surgeon opted to leave my pouch in - mostly due to insurance reasons. My insurance insisted that I spend the least amount of time in the hospital, take the least surgically problematic route, and both the surgeon and the insurance wanted to give me "an-out" should I decide to opt for a future revision of my useless J, or a pull thru of my cuff.

Being on this side of things, I can tell you that I wish I would have held out and had my pouch out and a sew shut.

Firstly, I knew that I would have been comfy not having the option to 'go back' as I had a temp loop for 3 months and did fine with it.
I have also had continued pouch issues, albeit more minimal then moderate, and have had problems with ongoing pouchitis and cuffitis, requiring a few rounds of cipro, flagyl and canasa. I also have had some issues with enjoying relations as I feel unable to compltely relax because of my continued irritation in the pocuh area, and not so good muscular control when things flare.

Most of all I also now have a nagging fear because my too long rectal cuff is still in, and contains traces of UC. When the UC flares, or the pouch gets cranky, I get tailbone area pain, an inability to empty and a return of symptoms like pressure and that great old butt burn. I am also still exhibiting arthritic issues because I still have UC.

I also now need to go thru periodic Flex Sigmoids to both visually check the cuff and pouch, and get biopsies. I fear that my 7 year battle with my UC has made me more prone to developing cellular issues, dysplasia or cancer in the future.

Having a perm loop instead of an end has also been a bit argumentative, because the lower end of the loop is flush to my skin and is more difficult to fit an assembly to.

I know all people are different, and have met some who have left thier pouch in with no issues, but for me, looking back, I wish I would have opted to have a total removal.

Best of luck with your decision!!

Many thanks Diane for the reply. I think I may have put this in the wrong forum, I appreciate any advice whether from male or female.
Sorry to hear you are still having some issues. Would you consider going back to have the pouch removed or is that not an option?
Thanks again!!

Keane,
I may indeed go back and have the total removal, it's always an option, though I may have to go back to Cleveland to get it done. I am only 6 months into this, and my J may very well calm down - ppl say it can take up to 18 months for everything to settle down and act "normally". I'll never go back to the J - even if I had a doc tell me for 10000% sure that I will do perfectly.
I will give this some time, and see how I do, and what ever will be, will be. At least I can say that I pretty much tried it all - and never have to look back and saw "what if"!!!

I wish you the best of luck and keep in touch!

My 13 Year old son will have his J-Pouch removed in June. Except they don't want to sew the anus up due to possible abcesses, and long recovery time but they will remove most of it and scrape the mucosa off the remaing piece. He has had chronic Pouchitis and cuffitis along with fissures that wont heal and we cant get him off prednisone and antibiotics. They are pretty sure he now has Chrones of the pouch which he was Dx with colitis at first. They told me 5 days in the hospital for him if there are no complications. I know my son can't wait to have this done.

Also, sorry about joining the men's board but I am beginning to feel like you and getting rid of this thing but also am afraid of more surgery.
Good luck we both need it. I'm sorry that I went thru with takedown.
10 surgeries, 10 years.
Susan

quote:

diehl2229

I was reading this thread because this has been on my mind lately too.

Bill, when I got to your post I stopped dead in my tracks. I can't imagine being your son's age and having to go through all of this. I truely hope it all works out for him. One of my biggest fears is that my children may get UC someday.

Hi
I am new here, but not to living with UC and J pouch.
A brief history: I was diagnosed, eventually, with UC in 1975 (yes I am officially old ) and after remissions and flare ups, I had to have surgery in 1987 and 88. The J pouch was a new procedure in Australia then and I was fortunate the the surgeon was well trained and the surgery went well.
Over the past 22 years I have had times when I would have cheerfully operated on myself to get rid of the pouch - due to leakage, painfull anus/stinging/chafing (we all know what it is like), and the uncertainty of whether I would soil myself; which can be very embarrasing!
Then there is the majority of the time when all is acceptable - notice I do not use the word good!.
I can accept the limitations that come with the J pouch, and am fortunate to have a family that understands the times when I get cranky; the times I have to get up in the middle of a function and go to the toilet, the lack of sleeping for more than 3 hour straight, and the times I have not been willing to go on the long walk in the outdoors where there are no toilets available.
So, what I am getting to is that you need to be very sure that you want to go back to the illeostomy. When I have discussed this with my doctor he has said that I have the one time only decision; there will be no second surgery as it is physically not an option for me - the J pouch would be removed, and the anal opening closed for good.
I lived very well with the illeostomy for 5 months while the insides healed. Back to work, family life, gained weight back to where I should have been (even a little over ) and was feeling the best I had in many years. But I wanted to be "reconnected" and get rid of the "bag on my belly" as my children called it.
Sure life may sound not too good the way I have described it, but I am willing to put up with the down side. Just be sure in yourself that the grass is going to be greener on the other side of the surgery.
Whatever path you take I hope it goes well with you.
Chees
Michael

I had my temp illeostomy put on when I was 18 years old and taken down about a year later. About 3 years later, I had to have it reversed and had the temp illeostomy put back on due to complications. On the reversal, I was in the hospital about 5 days, and out of work about 6 weeks or so. Since then, I have had two beautiful little girls. I waited a few months before I started being sexually active. I am sure everyone's body is different, but for me, it took me a few months for my parts to start working like they should. Everything is great now. Best of luck to you.

The tough part of the pouch removal as I understand it is dealing with all of the capilleries and other blood related complications (Jan, any input)? In addition, sewing the anus shut can be very problematic. I was fortunate and had no issues in this area, just had to deal with the stitches for a week - miserable but so short lived.

For me, I got to the point where I decided any complications from the removal were better than living with the pouch, and at least with the removal I had a chance of improvement, something staying with the status quo didn't offer me.

The risk is similar to the original rectal dissection, since the blood supply down there is not your typical network, but more of a "mesh" of tiny vessels that can lead to hemorrhage. Plus, the nerves of sexual function are intertwined. Modern surgical techniques intend on sparing of these nerves. But, when you go in for pouch removal, you are also dealing with significant scarring, that can make this more of a difficult procedure with more complications. For some people, just "decommissioning" the pouch is an adequate solution, but it would still require monitoring, so that is a hassle. Plus, for others, the bypassed pouch continues to be a source of inflammation and illness, so the option of leaving it is not a good one for them.

The perineal wound is considered a "dirty" wound, similar to the closure of an ileostomy, but on a grander scale, so it is only loosely sutured together, to allow for drainage and healing from the inside out.

Jan

Keane - Hopefully you've gotten good counsel from your surgeon by now. Thought I would give you my perspective as well. My j-pouch just didn't work out. They stapled it shut, left it intact and gave me an end ileo, unfortunately I continued to have issues with the pouch: immense drainage and incontinence from the drainage, so back to surgery to remove the pouch completely. I now have a "Ken" butt. I was very concerned of impotence because of the repeated surgeries touching the pelvic floor so went to Cleveland Clinic for pouch removal with a surgeon who had done many of them. A lot of great colorectal surgeons who have done lots of j-pouches don't necessarily have removal experience, so find someone who does. The newer techniques have greatly reduced the risk, but the risk is real. The alternative for me was living in depends for the rest of my life which also detracted from the possibilities of having children. I am now scheduled for a k-pouch after 4 years with an ileo. Don't know if you have considered that option either, not right for everyone but wish I had gotten it from the beginning at this point. Happy to speak with you directly if you have any other questions.

Many thanks all for taking the time to give feedback on this post. It's much appreciated and extremley helpful to get advice from various views and experiences,
Thanks again!!!