I am going to suggest that you look for a new GI.  I had a GI who basically dumped me after my j pouch surgery because he said, "I was well."  When I contacted him with pouchitis, he couldn't help me because he didn't know what it was.  I went to my surgeon just like you did for check-ups and meds as needed.  Ultimately he referred me to a new GI, who I love. 

There are plenty of good GI's out there who know j pouches and are teachers as well as partners with us in our care.  You may have to interview quite a few to find one  you like and trust, but the benefits will be so worth it.

Best of luck finding the right fit for you

Sorry to hear you’re having such trouble. Could you get reference to a new doctor? 

I see my GI for everything except for a possible obstruction. My GI is handling pouchitis, cuffitis, routine scopes to make sure everything is okay, bloodwork to ensure I’m getting nutrients, etc.

I hope this helps. 

I did go for 2 or 3 visits after surgery was done, then for 3 years I saw no one. I didn't want to have to travel so far to see my surgeon and everything was going well. Things changed, luckily I saw a GI Dr when I was admitted to emerg for a bowel obstruction and he continues to see me for pouchitis when I need to.

When I asked the new GI about the elevated SED rate (45) , he said, "well, it's not 300."  I just feel uneasy about his cavalier attitude.  

Thank you for the advise.

A sed rate of 45 is unlikely to be worth the anxiety you’ve already given it. The sed rate isn’t specific to any one thing. If it’s increasing significantly, or associated with symptoms of concern then it could be meaningful. It’s only cavalier if you’ve convinced yourself that it matters. One person’s “cavalier” is another person’s “reassuring.”