I go to acupuncture and do yoga and take extra probiotics when my pouch gets a little swollen.  I make sure to walk and sleep a lot.  It always goes away so far without antibiotics or whatever.  In my experience, these guys are only for extreme situations because they usually have extreme, sometimes harmful treatments that do not consider the whole system and so screw up everything and don't really heal the problem other than temporarily, if that.  I have lost touch with both the surgeon and the GI, but when I did ask them for help, they gave me things that didn't help and failed to mention simple things that do help, like you'd think anyone who had a special interest in the gut would know.  But that was 15 years ago.  Maybe they get more training or have more experience nowadays.

I keep meaning to get connected to a new GI, but last time I went to one they got all fiendish and wanted to probe me and I barely knew them. (I mean, not even dinner and a movie first?) There was a creepy look in this person's eyes - they looked at me as if I were an object or science experiment, not a person.  They also wanted me to sign a thing that said I wouldn't hold them accountable if they perforated my guts with their tools.  I know this is standard protocol, but I couldn't sign it.  I'm going to try again, though, just in case I need extreme measures in the future.  I hope I don't though.  And I hope other people have more positive experience to share than I do!

A good GI would be who you could go to for pouchitis. I think the only reason you would see the surgeon is if there is a major issue that needs to be addressed.  

@dlewicki posted:

A good GI would be who you could go to for pouchitis. I think the only reason you would see the surgeon is if there is a major issue that needs to be addressed.  

How does one find a good GI, I wonder?

You almost have to treat it as an interview process. Having a recommendation from a friend or other medical professional (like a PCP) always helps as well.

A few people here have reported excellent long-term follow-up with their surgeons, but that appears to be an unusual experience with an unusual surgeon. Most people have better success with a GI who is knowledgeable about J-pouches. This includes periodic pouchoscopies, management of pouchitis, and anything else except a structural pouch problem.

I only see my GI. My surgeon is when I need a surgical fix.

@Sara Marie posted:

How does one find a good GI, I wonder?

I found a great GI doc with a recommendation from my primary care provider. You might want to ask your regular doc for a recommendation.

Hey Maverick, I did try that.  It did not yield good results.  I may try again.  I have a different primary doc now.  I also looked on the internet for my city and landed on one that seems like she might know some stuff.  I thought about asking my primary for a referral to her.  There just might not be any good J-Pouch follow-up docs in my city.  As more rich people move here, we may get better medical options.  Of course, like many things, those services may only be available to the rich. 

My university hospital GI doc is my long term go to doc. While my surgeon handled the initial post surgical aftercare, my GI, who recommended surgery is tasked with all ongoing aftercare.

while my surgeon would be willing to perform scopes as needed and consult with me, I do not see him having a role in dealing with pouchitis, cuffitis, etc. and I am sure he feels the same.