Here goes...my first question online after iliostomy surgery 1-9-15. In Aug 2013 at age 59 I suddenly had a very sore bottom. Thought it was hemorrhoids,turned out to be anal fissures. About the same time I developed canker sores inside my mouth. 2 or 3 at a time, one would disappear then 2 more would show up. Had an anal sphincterotomy Oct.2013. Both my anal surgeon and my primary doc said "This could be chrones disease." ( I had had 2 colonoscopies back in 2009 tho with no signs of it then..) Anyway, I did have a colonoscopy in dec 2013 and was promptly diagnosed with Chrones. I was immediately put on prednisone (40mg a day tapering down to zero after several weeks ) along with Apriso 4 daily.
Oh yes, let me just throw this in. I had not thrown up since 8th grade...(About 1968) until summer 2014.
So things were really fine until late June 2014. I began having lots of loose bms, was sicker than I've ever been, was diagnosed with C diff in early July 2014. Got MORE anal fissures in Sept 2014, had a kenalog injection Oct.2014 which was sloop much better than the bottom surgery I had.
Well I never got over the c diff. I took flagyl, vancomycin, and difficid and lost over 60 lbs from july 2014 - jan 2015. I changed GI docs, was put on remicaid in Oct 2014 which did absolutely nothing for me. Went to emergency room 1-8-15 and had "temporary" ileostomy surgery the next day....luckily the surgeon was same one who had done my kenalog injection in Oct. I put quotes around temporary because I chose not to be re attached. Solo I do still have my rectum and anus for now at least
All that history leads me to my question... I am still receiving remicaid infusions every 8 wks. Is this ;common ? Is there anyone out there with no large intestine who still takes remicaid? I will say for the most part I feel GREAT since surgery. Only 1 short episode of canker sores since January and I am a healthy weight and can eat most everything with no trouble so far. So here's another question. Is there anyone who has NEVER had a blockage? That is the one thing I really fear.
Thanks for any replies. I am learning solo much from y'all!