Does anyone here have some kind of post traumatic stress from the medical misery that lead up to (and may include) your pouch surgeries?
It seems that any issue that arises with my pouch sends me into an emotional crisis because i think my life of hospitals is coming back to get me.
I have a fistula, pelvic floor problems, and recurrent pouchitis. Sometimes these things cause me no problems and my life is good. Sometimes i go thru rough patches where all three are bothering me or just one or two. Right now i think i have pouchitis after a trip to India, but its not normal pouchitis, its just more pain and pooping difficulty. I have had so much evaluation and i thought i was getting understanding of it but this case is weird again.
Im back to flagyl and cipro to see if they will help but of course i worry that one day the bleeding will come back and i will have to go on prednisone again and my face will bloat up and ill go back to being prednisone-manic, and then running the gamut through drugs that dont work, and lose my pouch, and my future i worked so hard for.
And i see things exactly like this happening on this forum every day so its not like anyone can comfort me by saying this wont happen. But i feel helpless to stop it if it starts, just like the UC. Knowing it is worsened by negativity and worry doesnt make it any easier to solve.
I should contact my doctor again but instead im just taking leftover antibiotics from the last round because im tired of messaging her. I feel like im annoying her and the staff. They think im good because PT helped but now theres a new problem the PT isnt sure about. My rectum just HURTS. no diarrhea, no cramping, normal frequency. No blood. I felt some stinging 2 days ago that could be a fissure. Im worried this is cuffitis or Crohns brewing.
Im trying to have a future. Im 43. I want my life to start already. I want to know ive solved everything so i can relax. The recurrent nature of these flare/remission diseases are mental torture. I wish there were mental health programs that treat medical PTSD from illnesses that never really go away, the feeling that disaster is always looming is crippling me.