Hi all-
I've been a fairly active member at the UC forum. I was diagnosed at 18 so it has been nearly 5 years since my diagnosis. Sadly it has been a really rough go. I've been in and out of the hospital more times than I remember. I won't bore you with the details but some highlights: 1.5 years ago I was hospitalized for neutr
openia caused by 6-MP, and last November I got C. Diff which caused me to flare very badly. I ended up going into septic shock in January (at this point they tried to make sure it was UC and they had a hard time determining it, said it was indeterminate colitis but assumed UC) and had an emergency colectomy. I had two other surgeries to create and attach a J-pouch. The last J-pouch surgery was in June.
I started having more anal problems and developed what I thought was a Bartholin cyst. After going to many doctors and being on various antibiotics and doing procedures, I ended up at a colorectal surgeon who told me to immediately go to the ER because he had to do surgery. The "Bartholin cyst" was actually a fistula, and I have another fistula behind the anus where I thought I had a hemorrhoid. He drained them and placed sitons, and put me on antibiotics.
The surgeon is certain it is Crohn's disease because the fistulas weren't due to an issue with my pouch, they were due to problems in the cuff. I'm going to the GI doctor next week to see what I can do. I'm pretty bummed because I have already been on Remicade and Humira and neither seemed to work very well, and I had moderate allergic reactions to both. I know that there are other biologics out there as well as Tysabri but I guess I'm just worried it won't work again. I do feel a lot better now that my abscesses are drained and I have the sitons in my fistulas, though. I was in pain constantly before the drainage surgery and now I am pretty good as long as I have my cushion.
Thanks for listening!
-Kelly
Post Edited (kcolwell24) : 9/17/2011 9:13:14 PM (GMT-6)