Posted 5/3/2017 7:40 PM (GMT 0)
Hello all, I was diagnosed with proctosigmoiditis about 6 years ago and have never really experienced a sustained remission in that period of time. I've tried Lialda, Azathioprine, Prednisone (the worst), Canasa, Mesalamine enemas, probiotics, dietary changes (SCD, gluten free, elimination diets, etc), Remicade and most recently Entyvio (~7 months). My first few infusions, I had a rash and headache for a day or two after. My latest infusion was 2 weeks ago. Since that infusion, I've had migraines, nausea, and fevers. That has mostly subsided, but I'm now having colitis symptoms creeping back up on me after only 2 weeks.
I wanted to have surgery 2 years ago before trying Remicade, but my doctor talked me out of it at the time. Now that I feel I'm having some kind of reaction to Entyvio and it's not been as effective as I'd hoped, I'm ready to bite the bullet and pursue surgery. With the location of my inflammation (rectum, proctor and sigmoid) I am leery of the j-pouch due to the risk of inflammation in the anus/rectum area. Has anyone with proctosigmoiditis experienced issues in this area with a j-pouch? I honestly would be fine with going straight to the bag and not the j-pouch, I just want to remember what it was like to not have to constantly search for the nearest bathroom and get some quality of life back.
Any tips or suggestions would be greatly appreciated!!!