Sharon,
I was happy to hear you got your test finally -- and now this. One step forward, but headed up a very steep hill. I hope you are doing better nutritionally as this has got to be taking its toll. What a warrior you are!
I also understand and admire your dedication to your son! I've been though my own personal hell with this disease while raising my two sons from 9 & 11 to now 15 & 17. They are so challenging and amazing they defy description -- I don't know what I would have done without them lighting my way. Remember that ultimately, a healthy Mom is the most important thing for him and for you!
I hope you can get several medical opinions on what to do next now that you have the info on what it causing your problems. It sounds like it wasn't something new, but pretty much what you thought. But given the added ulcerations in the pouch, I'd hate to think you are going to go another round to try to save the unsaveable. Though I know it's difficult weighing the short term vs long term implications of all this sometimes -- the lack of response from your doc certainly isn't helping! :-(
My bias is that I wasted too much time not getting mine taken out sooner -- both the colon and the pouch. Many doctors like mine still go too long keeping organs with the best intentions but they overlook the individual. You are not a statistic! You know you better than anyone -- doctors can be better or worse, but they are still mostly carpenters (albeit, life saving ones!) Get really good doctors to look at your test results closely and run more if necessary to accurately determine the possible causes so you can decide what's best for you and your family!
Keeping you and your son in my prayers for support & guidance,
Jennifer