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Soooo, I was a little surprised when I spoke with my surgeon this week. After my appointment last week (with one of his partners) I knew I was going to the permanent ileostomy and we discussed the removal of  the J-pouch. However, the lead surgeon said to me directly that he actually recommends leaving the pouch in as a "space holder", among other things. (He also feels it will be a much easier surgery with faster recuperation period if the pouch is left in place and that if the pouch is removed I will require abdominal reconstruction.)


I was more than a little shocked; I guess I just assumed they would remove the pouch.


But doesn't leaving the pouch in place open up the possibility of necrosis? I don't know, I understand his reasoning, but it just seems odd to me.


I will be speaking with him again prior to the surgery; what other questions should I ask him?


I should add: my surgeon is very, VERY good. As in, at least one of the top 3 (if not the number 1) in Europe for surgical IBD treatments as well as other GI surgical treatments and colon cancer. In addition, he is a specialist in rehabilitation from complications resulting from abdominal surgery. So he does know what he is talking about and I do trust his surgical ability.


BTW, he told me he was REALLY surprised that the fistula recurred after almost a year; he's never had that happen with a patient before.




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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.



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  Would the fistula still be there, but no longer active - as in, no more poo going through, and therefore no longer a problem ...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! 



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. 

My husband has had his jpouch since 2005 as a result of colon cancer.It always leaked and he decided to have a colostomy in 2008. Unfortunately the pouch was diconected and left in. The ostomy was never a problem. This is a warning to all those who disconnect and doctor leaves it in. He had constant smelly discharge and this was never dealt with no matter how many doctors he went to. In July he developed sepsis .When he went in hospital they gave a ct scan and found a large abscess on his psoas muscle and several more in pelvis.All this was because pouch was left in. He is on strong IV antibiotics and faces surgery to remove pouch and rectal stump. They have to go thru the anus because abdomen has so much scar tissue. This a difficult six hour surgery and wound closure is biggest problem. I am saying this to maybe save others from all this pain that could have been avoided with pouch removal at time of ostomy. I hope you all will discuss all this with your dr to avoid this mess. A lot of prayer power behind him , so we are all believing he will pull thru.

When  I had mine done my surgeon who gave me the pouch and after two years of problems said she would NOT do the surgery unless I agreed to remove the pouch at the same time. 

I see why now. And I'm glad I did have it removed. I still have all the components to have another pouch created but I will never do it. The ileo is just fine.

This is just a heads up to anyone going in to have this particular surgery. 


Do you still have your rectal stump Richard? I don't see how they could construct a new j-pouch without it.

I was diverted first and when it was obvious my j-pouch wasn't going to get better my j-pouch and rectal stump were removed 6 months later. My surgeon spent 3 hours, during the laparoscopic diversion surgery, taking care of my abdominal adhesions/scarring. During the open surgery to remove the j-pouch and rectal stump she spent another 3 hours on the adhesions and scarring. Besides the 2 open surgeries to remove my colon and j-pouch creation I've had other 3 abdominal surgeries. I had an abdomen full of adhesions and needed opiates for the pain that they caused.  After she removed everything and did her magic on my adhesions I am in less pain but still need some pain medication.

The removal of my j-pouch and rectal stump surgery took 8 hours - 5 hours adhesion related and 3 for everything else.  My surgeon said the removal surgery was more complicated that the surgeries creating it but the recovery was much faster and better. The incision was longer than when my colon was removed too.  The most problematic part of the recovery was the pain in the anus area.  It took months of sitting on cushions to keep it from hurting.  I recommend you get a nice cushion. I got one from the Mayo Clinic after the surgery plus I bought another one so one was in the car.

I imagine since they are going in through the anus area that he will have more trauma than people having open surgeries have. So please anticipate that in his recovery time.

Did they already deal with the abscesses or are they going to do it all in one surgery?  I hope all goes well! He is use to the ileostomy so he won't have to contend with all that goes with getting a new one.

Thanks for your warning for others contemplating removal surgery.

Last edited by TE Marie

Yes. I still have my anus. She sewed it from the inside. Have to clean it everyday.  Just light mucous.  No big deal. 

I thought she was going to remove it but after reading some who have had it removed I'm glad she didn't.  Sounds painful and I think or know that's why my recovery was so fast.  I will never get another pouch but she left me with that option.

Right after the surgery she told me this.  And tounge in cheek I asked her why?  I said you won't give me another pouch!  (she knew doing that again would be too much for me) .  She said I could consult another surgeon if I wanted to. I said no thanks. Lol. I'm done and don't ever want to go through any of that again. Never.  I don't have pstd but if I do it again I will.  It was the most traumatic thing I ever went through. But it's good now.  I'm where I want to be.


I have basically the same. A tiny amount of intestine above the anus was left as well as the anus I get scoped every two years (I did have rectal cancer as well as UC). It takes a minute or so, no drugs. I did have a mucusectomy when the j pouch was done. I get a little mucus excebtion which is no problem. Theoretically I could get another pouch but that isn't going to happen with current medical methodology. I am satisfied with my end ileo. Also glad I didn't get the anus removed and sewn up backside.

As can be seen in my previous post, If you are done with the pouch and can handle the operation get it done in one surgery. Disconnect, remove pouch, end ileo. They were able to do all my surgeries laprascopically.





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