Ok so I wanted to do this long ass post about my day at my Oncologist (McCullum) who is the only doctor who seems to listen and explain things to me and also questions why I am not on Celebrex or Sulindac. Anyway, I told him I had a knot or lump in my left rib cage area and I was worried it might be a desmoid tumor growing. He moved it around and said no that it was my intestine. I have been bitching about this thing for 3 month now and everyone says there is nothing wrong with me or blows me off like they don’t have time. And I am tired of being fed antibotics for pouchitis symptoms and or bacteria overgrowth. Well I am over it all. So I am going to see Dr. Bo Shen since he is the UC/Chron’s/Pouch/Pouchitis “Guru” on the cutting edge of medicine for us. Soonest appointment I could get was October 2nd. That is fine, it will give me enough time to beg, borrow and steal my way there! I will stay months if that is what it takes. All I want is a few scopes, cocktails of meds and possible camera in my belly button to look around, some exploratory surgery the easy way.


tomorrow after my cancer support group (have nothing better to do for the afternoon) I will try to put more of a post together.


Oh I get my “ablation” of my Duodunal (sp it is late!) on August 29th. Long needle down the scope, saline injected then burn the remainder of the polyps and dysplasia. 1% chance it can puncture then surgery would happen but that is rare and this new GI has never had it happen in his 44 years of scopes.

My Iron is way low once again so time for an infusion. I can usually tell when my iron is in the toilet, my leg cramps are fierce. My whole right calf is spasm after spasm and have a good limp going. Hurts like hell. Over the leg issues already.


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