Hi folks,
TL;DR is that I'd really appreciate a recommendation for a GI specialist in the Boston area with J-pouch experience; I'm having a flare up post surgery and finding it hard to access care in a timely manner. Any suggestions very much appreciated!
More details - I had 3 stage J-pouch surgery last year after an emergency colectomy due to a volvulus in the colon. I've had a long history of volvuluses in the colon and UC (which had been under control). Post take down, I had another (this time small intestine) volvulus, which was resolved surgically. Fast forward 6 months and I was generally doing fine, 6-8 times a day visiting the bathroom.
Then, I started to experience symptoms of what my surgeon suspected as pouchitis; rapid increase in bathroom visits, at least double (10-15 times a day), night time leaks. After a course of Cipro, it quietened down and then returned. I was up to 21 bathroom visits a day when they put me on the second round of Cipro. This caused things to slow down too much; I ended up in the hospital with a suspected partial obstructions, intense cramping, major distension and not passing anything. This was resolved via bowel rest. Then, the next week, the same thing, back to hospital.
Since then, I've been experiencing all the same symptoms I used to have when I had UC, including urgency, cramping, pain near the rectum, diarrhea and so on. It's hard to eat or drink water without pain down below.
I have a followup pouchoscopy scheduled for end of Sep and my surgeon suspects motility issues and has referred me to a top GI motility specialist.. who can see me only in January.
This all feels hopelessly long to wait; my original UC was diagnosed rapidly and Prednisone put things back on track before we figured out what worked (6MP and Asacol). Meanwhile, I experience continuous and severe pain, diarrhea, cramping, inability to sleep, difficulty staying hydrated, etc. which makes it hard to focus on work, to exercise and poor quality-of-life.
My old GI was not experienced with pouches; I now have a great surgeon and a motility specialist referral, but nothing will happen for months. It would be great to have someone who can help with treatment meanwhile. Would really like to discover a GI I can speak to for advice in situations like this.
I'd be also interested if anyone has experienced this kind of combination of (suspected) motility and inflammatory conditions, this seems a pretty weird intersection; the surgeons I spoke to before J-pouch surgery remarked on the fact that the UC was under control but volvuluses were happening anyway.
Thanks!