removal or disconnect?

Necrosis is not an issue, as the blood supply and nerves remain. You will still need to empty your pouch once a day or so, as there will be accummulated mucous that is sloughed off. There also may be a risk of diversion pouchitis. It does not always happen, but it can be fairly common. Still, leaving the pouch intact works for some, and it is a far less complex procedure than pouch removal. 

If it becomes a problem, the pouch can still be removed later, and it might go more smoothly after you have been living with the ostomy with improved health and vigor.

Another possibility is to remove the pouch, but leave the sphincters and anus behind. This leaves far less mucous membrane to drain. Also, it heals better than the big perineal wound from removing everything. I know of one member here who had that procedure.

Jan

That is interesting.  I'm curious as to how leaving the pouch in would affect your fistula?  Would the fistula still be there, but no longer active - as in, no more poo going through, and therefore no longer a problem ... ever again?  (I know, I know - never say never in our world).

One more question - your surgeon never had a fistula recur a year after a pouch re-do?

Hmmm, that is definitely food for thought, Jan. Thank you. I hadn't thought about the possibility of not having to do the "Barbie Butt". I will definitely put more thought into this and have Qs lined up for the next time I speak with my surgeon.

As to the other, I think that yes, the assumption is that with no waste going through, the fistula won't be a problem. It is quite low, so only full removal would permanently make it a non-issue. But I do need to clarify this again.

My surgeon has done the pouch advancement procedure before, several times, for various reasons and has never had a fistula form after one, ever, including women who had R/V fistulas prior to the advancement. He said that if the fistula was going to recur, he would have expected it to do so within the first 6 months or so, not at almost a year later. So for both reasons he was very surprised that mine came back.

I guess the stupid thing just does not want to give up! 

Gin

I would ask him about the possibility of cancer occurring in the un-used pouch and it going undetected.  My surgeon said to me when he removed my colon and gave me an ileostomy (prior to the J-pouch) that if I wanted to live with the ileostomy he would remove my remaining colon and rectum at about the 5 year mark as there was an increased risk of cancer occurring there because it was unused.  I'm not sure if the same thing goes for small intestines.

I read somewhere that removing j-pouches was as traumatic as the removal of our colons and rectums. I don't remember why. I don't remember which member but there is a lady from Minneapolis that went to a permanent stoma and left her j-pouch in. 

If I need surgery like this I was planning on leaving mine in.   I didn't realize that there would still be mucus coming out of it though.  I don't want anymore adhesions in my abdomen.  5 surgeries worth have messed me up enough.  I don't think I could handle another operation like the the first j-pouch one again. 

It's wonderful you have a surgeon with so much experience! This is a major decision for you and I think you should ask him as many questions as possible so you know exactly what you are facing.

I tried leaving the pouch and going to an end ileo, it did not work for me.  I had excretions from the pouch that increased steadily in volume. Not so much mucus but much thinner and difficult to control. The other issue I had was that the tension from the pouch did not enable the surgeon to give me a good stoma, it was near flush and difficult to seal. So ultimately I had the pouch removed and stoma redone (after six months). I am satisfied now. All this meant an extra surgery and hospital stay.  While you could roll the dice my advice is just get it done. While leaving the pouch works for some, it didn’t for me

All my surgery was laparascopic including pouch removal. I also do not have Barbie butt, the anus is intact and it has not been a problem. 

I had mine disconnected a little over a year ago. I have had the pouch for over 20 years, and it was so scarred in and such, that my surgeon did not want to remove it unless absolutely necessary, since it is such a horrible and difficult surgery to remove everything. I did have one small episode of diversion pouchitis, that cleared right up with antibiotics. The biggest downfall for me has been in the last 6 months, tension from the pouch has caused my stoma to become flush now. I have to change my flange every two days because of it. I wish I could get 3 or 4, but its not going to happen for me with a flush stoma. But I can live with 2 days. Every day changes become a little too much. Recovery from the disconnect surgery was faster than step one or two of the j pouch surgery. I could have came home the second day, but stayed one more day just to make sure everything was ok. I plan to stay with the disconnected pouch, unless something changes requiring me to rethink things. The surgeon does want to scope the pouch every 2 years to check for displasia and such. 

Am still waiting for a date for pouch removal starting month four.  Having major problems with joints an partial blockage despite 25 mg of prednisone plus Cipro booked for a CT this week the theory is I now have chrons wants to check for it in rest of small bowel to do repair all at one time will have a Barbie butt nothing else was offered also have fistula between vigina and pouch was told the hardest part to heal will be the anal area since I will be still on pred to come off would not be an option as I would be too ill for the surgery.  Have had my pouch since 1987 the last 10 years have been one problem after another am anxious to get it done but scared as well the old saying be careful what you wish for as you may get it.

I've been trying to figure out what to do.  I can't take the pain, even with narcotics, anymore. I've got another pouchoscopy and consulation with my GI and a Surgeon.  I wish they could do it tomorrow!  Both doctors are at the Mayo Clinic so I don't think I will  need a second opinion.....This is an informative thread.  I appreciate hearing about all of you and hope bright days are in your future.