I have been there for a couple of months and I am going in for a complete ileostomy and rectum removal on the 16th. In between I am going in for pre-op tests and the required reading and ostomy meetings at the hospital.
I wanted to thank everyone here for allowing me to be a mod several years ago, and to all the people who supported me and provided a fellowship of love.
To the newer people who I have never met, I hope your journey to remission is a good one, and hang in there...there are lots of people in remission who you never hear a peep from who have this dd,
To the doctors and drug makers who I have to say gave me some very good years along the way - and the remission that I was so looking forward to. (I had to stop remi as I am taking drugs incompatible with any immuno-supprescent for my Charcot disease diagnosed 2 years ago). I have great visions of healing with new drugs and therapies, holistic and pharma.
In the meantime, my path is following a different way now. And for me, having two diseases was just too much to fight. My wonderful doctor agrees - and if anyone in the Wash DC needs a great GI, give me a line, as he has done everything including giving me his cell phone when I was in the hospital. He is a saint.
And all are you. I will be in the Ostomy room, just next door. I will try to pop in to see what is going on here and say hello from time to time. And please don't be afraid of the Ostomy room. There is a magical spirit there as well. And there is great information if anyone needs to ask.
With all my love here and many thanks to all