Hi everyone, I've been a lurker for several years, and have always found so much good advice here  that I am hoping someone might have some input on an issue I'm having.  A little background:  I was diagnosed with US in 1989, had colectomy/J pouch surgery done in 2008 and was generally doing ok for some years, with the exception of several bouts of pouchitis which were generally well controlled with a round of Cipro.  Starting maybe 4 years ago, I started to develop a lot of pain, usually around my tailbone area that would spread sort of out into my butt cheeks - that too would generally go away with a round of Cipro, so I assumed it was just a new symptom of the pouchitis.  When I think about this all now, i can see that my symptoms over the years - increased output, more frequent trips to the bathroom, increased sense of urgency, pain - have intensified but I seem to have gotten used to them/adapted (I hope that makes sense - f these symptoms had come on suddenly, I would be very alarmed)  So I had just kind of been existing with these symptoms until December, when the pain became severe - I wound up in the ER with a rectal abscess (internal) that was drained.  The surgeon I saw then indicated that he had seen a small leak in the area where my pouch was connected to the rectum, this had caused the abscess and he fixed the leak - but he felt the condition was likely to reoccur.  I was sent home on antibiotics, did well for a few weeks, the pain came back and I went to see the surgeon who did my pouch.  To make a long story short, i wound up having two more surgeries to drain two new abscesses (all cultures have come back positive for e. coli) and then had a CT scan which showed a lesion on the levator plate.  I'm stiill on antibiotics, but I am in so much pain - it's been about 2.5 months since this all started and I don't see an end in sight.  My surgeon said he might have to reverse the pouch, but that would not resolve the infection/levator lesion.  He also indicated that there was no clear reason why infections like this happened. It hurts to sit, it hurts to lie down on my left side and I feel generally crappy.  I go to the bathroom about 20+ times a day (trying to poop and sit makes the pain worse, I am to the point where I pretty much have to stand to go, which is just mortifying and doesn't make leaving the house easy) - and it seems like no matter what I eat, it makes me feel awful (I've done paleo, SCD, gluten free, dairy free, sugar free over the years).  

So if you've stuck with me this far (thank you for reading, I realize this is very long), I'm wondering if anyone has encountered anything similar along the lines of my story?  Any advice?  Feedback or thoughts?  I am terrified at the thought of losing the pouch - but at the same time, I am feeling so awful that the option sometimes doesn't seem so bad (but i feel like that is coming from being in pain and wanting it to stop)  If anyone had anything to share, I would truly appreciate the input  Again, thanks you for your time in reading this.

Tara