Hello All, and many thanks for the kind thoughts. I have had quite the time of it, and still am not home. I am currently 2 months from my hospital release to the day, and about that for my last of seven surgeries to initially correct Charkot Disease of the legs (a form of severe osteoporosis with dozens of fractures of the feet and lower legs - usually caused by diabetes - which I have - but usually found at a later age (50 in December)). We believe that it was brought on by 7 years of prednisone to control my UC. I had seven operations as I contracted MRSA while at the hospital and needed a tissue graft from my abdomen to seal the foot to save it. Since then I have been recovering from that.
I had my last Remi in late January, and have been off 6mp as well. I am taking Asacol, but am in a bad flare right now. Worsened by my inability to walk yet (past a few steps anyway), I am reliant on a private nursing aide to help me use a bed pan. I had nearly 20 bedpan events yesterday and needless to say it is hard to keep an aide.
My spirits are low because of the UC flare. I have been on Vancomyacin, a very powerful antibiotic on IV and had it removed just 2 weeks ago. I was hoping that would improve my urgencies, but that has not been the case.
My Infectious Disease Doc just ordered a stool test - looking for a bacteria in the colon which can survive when all others have been killed off - both good and bad. I am on VSL3 at 4 sachets a day.
We have spoken about that bacteria in this forum here - I have forgotten its name. Does anybody else remember it? I have a doctor appointment on Friday, but the lapse of memory is killing me!
Although I was originally going to restart Remi now, the MRSA has thrown a monkey wrench into those plans. I heard my Infectious Disease doc wanting to wait 6 months - that would be December. I would loose my mind if I had to wait with this flare until then. The same with all immino-suppresants - fearing the MRSA would raise its head again requiring amputation and possibly worse.
I am on Xanax in a big way, and pain killers (more for the binding effect now) but they seem not to be working as they had.
So I wish I had better news. My wife has been a saint - putting me in convalescent care condo rather than a nursing home - also draining her retirement savings for me. Hopefully soon I can just pay the rent here and loose the round the clock nursing aides (about 14K a month). Good incentive for learning to walk again.
I am sorry for not being here - Even though I have this laptop, it has been very difficult for me to sit and internet. Also I hope that will change - but doing the bedpan thing with help nessissitates being in bed.
Please try to remember that nasty colon bacteria's name for me - that is driving me absolutely bonkers - hehe.
I hope all here - both old and new guys are doing OK. I miss you all and pray for all of you as well.
With all my love