so sorry for what you are going through.  sounds like pouchitis.  yes?  has this been since the get-go or recent?

i went through every possible anti-biotic for years and years and numerous other treatments.  nothing worked.  i now have a k pouch and am very happy with it.

i suggest dr. joshua korzenik, who is the head of the crohns and colitis clinic at brigham and women's here in boston.  he is very knowledgable and well connected.  knows dr shen and you would be confident that they would coordinate.  janet

I’m in CT drive over an hour to see Dr Ginsburg- he’s got an office in Hampden, CT where I see him but he also has an office in a Stanford I think. He is amazing. I went to him when mt two other GIs weren’t sure what else to do with me. He does trials and is up on the most recent research. Highly recommend him. Good luck.

I'm in CT also.  I don't have a GI doctor at this time.  Bubba, does your GI do your scopes as well?  Right now, my surgeon is doing them.  I am thinking about getting a new GI doc as well.  Unfortunately, my last guy wasn't the best.  

Yes my doc does the scopes. He has taken over my care after my surgery, and said we’ll prob have me visit him every year or so, or as needed. His office has the scope facility in house so it’s easy. His appts start at 7:30am too so I can do before work. I’d you need infusions, they do them in house too. 

Hi ...thanks for the quick responses. I really appreciate the help.

In regards to your question, JLH, after the initial (awful) 1-3 years, I've had a pretty good run with this pouch. As I get older, however, it is harder to resolve the pouchitis and the collateral damage is more painful and ongoing.  This is getting ridiculous and if removal didn't involve major surgery, I would get rid of it tomorrow!

Thanks, I had my first scope last July.   As of now, I'll probably have my next one with my surgeon at Yale and see how it goes.  I'll see if he is familiar with Dr. Ginsburg.  As of now, I have no issues and I really like and trust my surgeon.  

elizab—I  have tremendous empathy for your situation and I’m so so sorry for it. I refuse to remember all the  problems besides pouchitis,  especially the debilitating pain. About 25 years ago I broke six ribs and that was preferable to the blockages, prolapse, pelvic floor dysfunction, SIBO and such.   I did my best to stay active and never complain but that too takes it’s toll.   

 I also didn’t want another surgery as I had had several joint replacements in the meantime and Septic infection.

One situation I faced, here in Boston, was that there was always another doctor to go to and always another medication to try.  That gave me hope. It also dragged on the decision to remove the J pouch way too long.  I became refractutory to the antibiotics and chronically incontinent. Not good.  Thanks to this site I learned about the k pouch and also thanks to this site  I was helped through every step of the way. No matter your decision we are here to support you. Tough decision. Keep us posted.  Janet

I also live in CT and I am treated by Dr. Myron Brand who has offices in Guilford and New Haven. He is an excellent doctor, very experienced with pouches as well, but he is close to 70 years old and I fear he will retire soon and I will be in the same boat as the rest of you. I actually met with Dr. Ginsberg around 8 years ago and didn’t hit it off with him so when I do need to make the change will look for someone younger at Yale. Before Dr. Brand my Pouch specialist was Dr. Oikonnomou at Yale who was the best Pouch guy I ever had but he was hired away by Mount Sinai in NYC which promised to start a “Pouchitis clinic” and put him in charge of it. Not sure if that ever happened but he is the guy I would go to if I were in NYC.

Hi. thanks for your response. I did try to trick down Dr. Oikonnomou at Mt Sinai. and learned that he is no longer there. As far as they know, he has transferred to a hospital in Chicago. This just never ends.  

That’s too bad about Dr. O no longer being at Mount Sinai. He is one of the more knowledgeable Pouch experts I have come across in the 26 years I have had a Pouch. He studied under Dr. Bo Shen at Cleveland Clinic, was mentored by him and speaks to Dr. Shen every week. This is our loss but a blessing for our posters in the Chicago area.