yes , you are right Scott , i will see how i do off the steroids , and with miralax only . Right now , i am on 30 mg . would know in next few weeks how i do . fingers crossed .Thanks for the feedback 
I had my first jpouch done in 2011 .soon after had problems with pouchitis did all the antibiotics vsl 3 could not get it under control going 10 -15 times a day sometimes more no sleep pain .Went to NYU in 2016 met with Dr David Hudesman assistant professor of gastroenterology to see about getting a permanent bag .He reviewed my case ran some test and determined that it was very posible that my jpouch was not working right .That maybe I had a mechanical problem with the pouch . He recommended that i get in to see Dr Remzi who had just transferred to NYU .My first appointment with him was in sept he ordered some test and confirmed that the pouch was not working properly . In oct had first surgery to disconnect the pouch and get a ileostomy . Waited six months before the second surgery to let everything heal and so I could get a break from lack of sleep and going so often I did not like the bag but I did like the rest. In April I had my second surgery to build a new pouch that was a hard surgery . Then in july had my third surgery to get rid of the bag . I am eight weeks out now and everything is going well I go six to eight times a day no pain . Dr Remzi and his team were great I hope and pray that today is as good as yesterday and am glad I had the option of a redo so far so good.
I saw the same doctor, Dr Hudesman in 2015 in NYU . He referred me to Dr Grucella , she did all 3 for me , take down in May 2016. The other surgeon at my new place said that they left cuff too long and I have severe cuffitis . I dont who is right and who is not .
I don't have answers for anyone, just some personal experience to report... Been suffering for 6 years from chronic pelvic sepsis from a badly made, leaky pouch. It could have been fixed early, according to the lit, but my inexperienced surgeon hid his head in the sand, and that let it get to the point where it is really not ok.
Now I've just had part 1 of 3 redo w Dr. Remzi. He is supposed to be the best, according to both other colorectal surgeons I consulted. He moved to NYC from Cleveland last year. He has done the most redos, apparently, and has written so much of the literature on the subject. I went to Cleveland, and his former partner/ex-fellow told me she thought I should go to him in NYC, though they would care for me there if I chose. Given the stakes, go with the best. I did.
He is not the clearest guy to understand--he wants you to take everything on faith in him and his experience, and he doesn't really seem to like being questioned on the possibilities of alternate outcomes. After my bad experience with the first surgeon, that's really hard for me... Despite the 'trust me' thing, I decided to go ahead with him, given his history and expertise. I figured that, even if his optimistic outlook is wrong, he is still the best person to figure out what to do next and go ahead.
Mine was worse than expected, but I still feel I have the right surgeon this time. It's so nice, after seeing so many people who didn't want to touch my problem or only offered permanent ostomy, to have someone who could wave his hands at it as 'routine' for him, because he sees it all the time.
The man is ridiculously busy--so many bad pouches in the world. He is doing over 500 surgeries in a year, which is too many for one person... there is so much demand for his services, and patients are coming from all over the world.
So I'm chilling out w my diverting loop ostomy for now. I hate it--more proximal than he had wanted to go, but because he will need to make a 2nd pouch, need to leave room. At least my bum gets a rest.
Next surgery will be long. He didn't offer to use my Pfannenstiel (low horizontal) incision, and told me from the beginning that he would use a vertical midline incision when he did the second surgery. Unfortunately he had to do that for this one, too. It's taking a while to heal.
I was not thrilled with the 9 month time course, but I understand why he recommends it. My first one was done w ostomy and lap colectomy/IPAA all at once, then 6 wks later, ostomy takedown. I was frankly malnourished, anemic, and had just come off Remicade. All reasons to do a 3 stage, but my inexperienced surgeon did otherwise... and when it all went to hell, he buried his head in the sand and put me on antibiotics, instead of doing what needed to be done. I found out after this surgery that the pouch is all twisted around, which is part of the reason it can't be saved. I'm lucky he didn't staple my vaginal wall into the anastomosis, at least, or kill a ureter. Dr. Remzi had to deal with a bit of a war zone in my pelvis the first time... hopefully, with the diversion of the irritant stool, it will be easier next time.
Functionally, second pouches are NOT as good as first ones! Everyone needs to understand this! It's another foot back in the ileum--that's not good. The more length lost, the less absorptive function. More loose stools than a 1st pouch. More bms than a first pouch. More electrolyte imbalances than a 1st pouch. All in all, second pouches aren't great. Dr. Remzi was so hopeful about saving my first one... when he saw it couldn't be salvaged, he was really disappointed. So am I; I know it means my quality of life won't be as good as we had hoped, even after going through all this.
Thankfully there are a few people out there to do the second pouch. It won't be easy, and it won't be great, but it beats the alternative.
My experience was a lot like yours . He does lean on the trust thing a bit .But in the end when we decided that we would proceed with the nine month redo I would have to trust in him and mentally give him control of my care which was not easy because of how I am . The six month break between surgeries one and two I did not like but in the end the break was very beneficial except for dealing with the bag which I hate I felt better physically and mentally better prepared for surgery two . I am 15 weeks out and things are good this pouch functions very good . About 6-8 bm a day sleep is much better no pain so so far so good. I take one day at a time and am thankful that I had the option for a redo and that Dr Remzi did it .I hope tomorrow is as good as today . The nurse at NYU were great . Good luck
Hi all , I saw dr remzi for my possible pouch redo.he found out that my cuff was 6-7 cm long and my pouch might be twisted as well. So , he recommend me 3 stage redo as well which is really stressful to go through that pain again .However , I am just curious to know that if ever anybody thought of suing their previous surgeon for such negligence .Thank you