Posted 10/12/2020 4:09 AM (GMT -6)
Hello folks, I am currently in the hospital from a spontaneous hemorrhage that was quite frightening. I have had Proctitis for about 10 years which was well controlled with Lialda and Canasa with the occasional use of Rowasa and the now discontinued Cortifoam (RIP). 2 years ago I had a flare when insurance switched me to Apriso. Went back on Lialda and added Uceris (which didn’t work) and then hydrocortisone supposed and enemas and seemed to come thru. In September of this year (the day before my wedding) the blood came back and another flare started and the proctitis advanced up the left side of the colon. It was a doozy of a flare and my doc put me on steroids for a 2 month course and Entyvio beginning in December. No real response at first and we went from 6 to 8 weeks. I felt about 85 percent better but still had blood on the tissue with about half of my movements. Had a colonoscopy in May and Entyvio healed the colon, but the rectum was a mess. I had been using Canasa twice a day and Rowasa every night for the whole flare so we added Uceris foam and Entyvio to 4 weeks. However, I was still having light blood in most movements (I average 3 well formed stools per morning).
Thursday morning I wake up feeling fine, go to the bathroom and suddenly it’s the red wedding from Game of Thrones. I am basically giving birth to jellyfish (sorry if this is too descriptive). I head to ER and am admitted. FlexSig showed Mayo 3 score inflammation in the rectum only. I am doing well on the rescue steroids, solemedol (sorry don’t know how to spell that). They are sending me home today with Prednisone and a switch to Remicade when approval comes from insurance.
My question is can this inflammation be put into remission with that level of disease? I do think that Remicade can help with proctitis but am feeling so defeated. They sent a surgeon up who said that I won’t need surgery now and believes Remicade can help, but I know surgery could be in my future. I am okay with that, but am hoping to get back to sweet sweet remission.
Anyone with any experience with this level of disease that came through? Anything I should be asking the doctor? Do I continue the rectal meds even though I seem to have lost response? Anyone experienced in good old Remicade? Thanks!