Hello all! I am getting ready for my pouch re-do. My last surgery in April I was just diverted to let my guts have a rest. I have felt really good with the ileostomy and am somewhat apprehensive about going in again. Has anyone had a pouch redo that could give me some information? I would appreciate input from those of you that have been through it.
Thanks in advance

Just wanted to say good luck!I see you are from PA.I had my surgeries in phillie too.

I don't have experience with a pouch re-do but I just wanted to say good luck! Where are you having the re-do surgery done? I had my surgeries in philly too.

I am scheduled for redo on Oct 11 at the Cleveland clinic. Thanks for the well wishes... unfortunately because its a redo its not my first rodeo went in in April for the redo but my guts wouldn't allow it so have had the ileo since then. Im hoping Im making the right decision... I do very well with the ileo but would like to be "normal" (hate to even say that...) The bag provides a better quality of life as far as getting you to feel better but sure does cause alot of inconveniences as well.... so kind of damned if you do and damned it you don't. Just wanted input from anyone experienced with a redo.

Can someone clarify for me what a "redo" is? Thanks!

In my case the surgeon that originally made my pouch left 8 cm of rectum. That has caused great problems in emptying as it makes somewhat of a right angle making it extremely difficult to empty. I am now going to have the pouch redone hopefully just moved down where it is suppose to be(only leaving about 2 cms of rectum).... ... if things don't go as well as anticipated and the old pouch isn't salvageable a new pouch will have to be made.

Renaye - Sometimes people have them reduced as they stretch out too much and prolapse.

Sandra - 8cm is a big cuff, I hope with the revision you'll have a better functioning pouch. Best wishes

Sandra!!! We need to be friends. I think you posted in one of my other threads about my pouch revision that I will be having in Cleveland, for the very same reason as you, though you are one step ahead of me. I am going to Cleveland Clinic for my ileostomy surgery on... wait for it... OCTOBER 11!! Maybe we'll be roommates. I'm excited to hear how you do with yours, since that's what I'm looking at sometime down the line. Maybe we can at least meet in the hospital, even if we're not roomies. So funny!

Boogiemomz and Sandra I wish you both the best! I had my first surgery in redo process scheduled with Dr. Remzi in Sept but decided to wait and consult with him and Dr Shen one more time. I probably will do it in Jan. I will be very interested in how you both do and will keep you in my prayers as I know it is a big decision.

Boogiemomz! How weird is that??? Maybe we will be roommates! When I got the ileo in April I was in the hospital for 9 days. My guts wake up very slowly after surgery. But after I got home I did much better than prior surgeries so I hope this one goes that way as well. I am told this one is alot worse due to the long surgery and working deep in the pelvis so I am a little apprehensive but very anxious to get on with it. I am def ready to get rid of this bag....So this puts me one step closer to that... BUt I will tell you with the ileo I have felt better than I have for a long time so I am hoping I am making the right decision by trying to redo the pouch. I will look for you once I can get around. My husband will be staying with me for most of the time and when he is not there my daughters will be. We walk about 10x a day... for real..so I am sure I will be cruisin( maybe not quite cruisin in the beginning but...) by your room if we arent roomies! It is soooo wierd that you have the same exact thing.... My case is a bit unusual and have had trouble finding people with this issue. I dont have an s pouch though. Why do you?? Looking forward to meeting you! (although I wont be looking my best!!! hahaha)

Haha, well then I'm not sure I can be seen talking to you, since I'm going to be all dolled up and looking cute. We should definitely meet up, maybe we can do some of our walks together! I have a full day of pre-op on Monday 10/10, do you have appointments that day too? I'll PM you and we can exchange contact info. So glad to know I will have a buddy in the hospital! Though I really hope I don't have to stay 9 days... we're planning on driving back the following Wednesday! Fingers crossed. I will be walking like a madwoman to get my gut to wake up!

I am doing my preop the week before.... couldnt stand the thought of an extra day there doing nothing but thinking.....sooooo i chose to go the week before and do everything. 2 of my daughters live in Erie so I get to see them as well the week before. Cleveland is only about an hour and a half from Erie so it makes it convenient.

Hi Sandra and boogiemomz,

Plesae share your experience regarding pouch redo. My husband has pouch dysmotility concern and we need to make a decision soon about pouch redo or permant ileo. Is Cleveland clinic the best for pouch redo. please provide your feedback.

Thanks
Charu

I had my "redo" in October and am really happy I got it done. I had mine done by my surgeon here in Tulsa. Good luck to you both!

Tulsamom, I am not very clear about pouch redo. What exactly do they do? Do they take out your original pouch and make another one?
I am trying to evaluate the risk of pouch redo. If it does not work and you have to finally go for permanent ileostomy, does it mean you basically lost some portion of small intestine which you could have saved if go for permanent ileo. I am trying to judge pros & cons of pouch redo mainly because our GI is strongly recommending to avoid pouch redo. So, I am a little confused as if I read these threads, it looks like many people did try pouch redo and have been happy with it. I am just wondering that since my husband has been diagnozed with pouch dysmotility, the doctors feel that same issue can happen with the new pouch also. I would really appreciate if someone could help me understand pouch redo process, pros & cons...

Thanks a lot
Charu