Thank you for the support. I have good news. My GI spoke with Dr. Silverberg from Sinai and is getting me the study protocol!!
I switch from Humira to Stelara next week and I guess will be starting the abx shortly. I'm so close to an ostomy that these 2 drugs are my last hope.
I'm supposed to re-start hyperbaric on May 25th. The issue is that I'm too ill to get there and commit. I'm not sure how I did the 40 from Dec-Mar when I was so ill and abscessing. I don't have anyone to take me this time. My eye sight hasn't recovered, but I can't solely blame HB as I'm now entering my mid-40's (yikes!) when things start going south!
I'm in a very vulnerable position in all aspects of life with only the tiniest of support systems and no job. I hope I can catch a break and get my life back.
IVIG (on hold)
UC/Crohns - tested positive for MAP antibodies & mycobacterium
Flaring 3 years. Currently dealing with fistulas, 2 setons placed and vulvodynia caused by IBD (taking 3000mg gabapentin)
started Humira Sept 1, 2016. 80mg weekly, 150mg Imuran
started Hyperbaric Oxygen on Dec 13, 2016---fistulas slowly closing (fingers crossed)