Is there anyone who redid the pouch, i.e. remove the old one and construct a new one? What is your experience?
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Had my original pouch in 2011 dealt with pouchitis or what seemed to be for 3 years tryed all the stuff vsl3 antibiotics diets no help went to nyu as a last resort was going to consider a permanent bag going 15 -20 times a day. Dr David Hudesman saw me reviewed my case everything he was seeing pointed to pouch failure more than pouchitis .At that time just about a year ago Dr Feza Remzi was coming to nyu from the Cleveland clinic Dr Hudesman suggested I get a appointment with him which i did In sept 2016 . He ran a bunch of test ct scan mri scope xrays and concluded that the pouch was not functioning properly also bad tissue in pouch causing inflammation so we decided to redo the pouch. Had the bag back in october 20th waited untile april 18th to replace rebuild the pouch so as to let everything calm down and heal and so I could get some sleep and get myself healthy again .Had new pouch connected July 25th 7 weeks ago had my post op visit yesterday and everything is going well I now go 5 to 6 times a day with no discomfort .I know its only been 7 weeks but I am very happy with the outcome I was never happy with the bag. I wanted to exhaust every option before I gave in to a permanent bag . I am glad I did so thankful to have found Dr Remzi thankful for the second chance for a good quality of life no matter what the future brings.The doctors and staff were great. I hope this helps you.
this is very useful. Exactly what i was looking for. I am also in NY and I was already pointed to Remzi.
Like I said he and his staff along with Dr Hudesman who is a professor of med in the Gastroenterology department were great to deal with. I live in NJ and will continue to follow up with Dr Hudesman .
Good Luck
Thanks. I would be interested to know how you feel in a year or so....
Me to
Allin posted:Had my original pouch in 2011 dealt with pouchitis or what seemed to be for 3 years tryed all the stuff vsl3 antibiotics diets no help went to nyu as a last resort was going to consider a permanent bag going 15 -20 times a day. Dr David Hudesman saw me reviewed my case everything he was seeing pointed to pouch failure more than pouchitis .At that time just about a year ago Dr Feza Remzi was coming to nyu from the Cleveland clinic Dr Hudesman suggested I get a appointment with him which i did In sept 2016 . He ran a bunch of test ct scan mri scope xrays and concluded that the pouch was not functioning properly also bad tissue in pouch causing inflammation so we decided to redo the pouch. Had the bag back in october 20th waited untile april 18th to replace rebuild the pouch so as to let everything calm down and heal and so I could get some sleep and get myself healthy again .Had new pouch connected July 25th 7 weeks ago had my post op visit yesterday and everything is going well I now go 5 to 6 times a day with no discomfort .I know its only been 7 weeks but I am very happy with the outcome I was never happy with the bag. I wanted to exhaust every option before I gave in to a permanent bag . I am glad I did so thankful to have found Dr Remzi thankful for the second chance for a good quality of life no matter what the future brings.The doctors and staff were great. I hope this helps you.
I'm considering making appt with them too for exact issues. How long was the wait to get appt and did you have to see GI before Remzi?
It took me three weeks to see him I started with Dr Hudesmen to treat what I thought was pouchitis . Dr Hudesmen suspected a mechanical problem was possible and got me an appointment with Dr Remzi who confirmed it and that resulted in my redo .I am going on 15 weeks with new pouch and thank god it is working great . They are a good team.
I didn't even know that a new pouch was even possible! I thought it was one and done. That's huge news to me!
I've had what I think is chronic antibiotic sensitive pouchitis for 3 years with bleeding causing anemia. My GI doc is so stingy with the antibiotics & I got my first inlet stricture from all that chronic inflammation. I want another opinion as to what the standard of care is and what my options are.
AF
Hold up. Not all second pouchers have a good experience. Not all first pouchers for that matter.
I lost the first pouch to c-diff and sepsis after fifteen years. With the second pouch I experience 10 to 14 bm's a day, chronic dehydration, chronic anemia, fecal incontinence, and I process food so quickly I cannot digest fruits or vegetables even cooked.
But, call me crazy, I'd have the redo again. I hate the bag. It made me more miserable. Just saying, have realistic expectations.
Good luck.
Good point thats why I am so grateful that the new pouch is working. I hope today is as good as yesterday . Like you I do not like the bag . Nyu and Dr Remzis team was a good choice for me.
Grieving Old Pouch and others,
Thank you for your input. Sure, one of my question will be how many of his cases improve and how long is the follow up so far. The other one is how certain he is distinguishing mechanical pouch failure from stubborn pouchitis. I am not rushing this for sure. Just want to see if this is an option at all.
keep me posted
Allin
how are you doing? I wonder about a short update if you are around.
Long story short: i virtually went through the same steps as you i am writing from nyu. I had my second op the poch redo with Remzi 2 days ago.
af
Hope all is good. My new pouch is now 14 months old and working better than the first one ever did. I now go about every 4 to 5 hours with no pain. I am so thankful that I found Dr Remzi and Dr Hudesman . When you see Dr Remzi could you tell him I said hello my name is Al Crincoli .I hope all goes well for you keep me posted please
Sounds promising, thanks for the update and I sincerely hope it will all stay like that.
Me to hope all goes well for you. keep in touch
how is everything going
I am working for a while already, it has been more than 3 weeks since the re-do surgery, so far all is good. I will try to schedule the last surgery (ileo reversal) before the end of the year. The real test will come after that. I was told it looked really bad, nothing could be saved from the old pouch, so they constructed a brand new one. I hope it will work well.