It's been a really long time since I posted. I really just need to vent. Sorry for the Rant.
I have been on this UC/Crohn's road for 16 years . I currently have been told that my UC is really Crohn's. No biopsy has ever proven Crohn's. I have had my Colon removed and a J-pouch which currently has multiple fistulas.I have had 6 major surgeries (3 stage colectomy, 3 stage pouch redo), as well as 4 seton placements, 3 abscess drains, blood clot in my liver's portal vein.I also have been told I have Hasimoto's and Mixed connective tissues disease as well as Raynauds. I am allergic to Mesalimine(5-ASA Drug have this ingredient),I've tried Remicade - which I now have antibodies against. Rituxan - Which did'nt work. 6mp which gave me pancreatitis. Enytivio - which I pretty sure a have antibodies against (I felt progressively worse after each infusion),Now I am on Cimzia. I don't have many options left except for surgery. I really don't want to have another surgery to remove my pouch - and I am not even sure if that will fix the problem. The last time I had a bag it was as problematic - I had leakage issues, skin issues, and still had pain. I am not sure what to do....I am tired of this awful road, and tired of the doctors that don't seem to care.I have had so many issues dealing with the GI doc's now I'm to the point I don't trust any of them.
I don't know what the next step is or what I should do at this point. I am almost out of options. I don't know if there is a solution to all my issues. I am just hanging in there.
Thanks for Listening,