Liz,
I too suffer from the symptoms you describe from pouchitis except my frequency is tolerable (nighttime seems a bit worse than daytime).
The constant fatigue and body/joint pain can be unbearable at times and I often get the sweats out of nowhere. My GI just recommended a pouch decogram (not sure if right term) to see if I have functional problems with my pouch as well. My surgeon told me my pouch should expand to the size of a small football after the adaptation period and I was assuming that is a good size as he was happy with the photos when he looked at them after the test for leaks prior to takedown.
I hope are on the road to feeling better since your surgery and your complications eventually resolve. Thanks for sharing.