I am a jpoucher since 2014. I’ve not done great for good portion of these 10 years. Most of my issues has been prolapse, 1 was partially corrected in 2016, along with removal of rectal cuff. In 2017 had Medtronic interstim implanted into Sacral nerve-that seemed to help, but mainly I used my bidet, wipes and Ilex Paste to keep my perianal area clean and edges of anus free of sores.
My output very acidic, take Colestipol for this, but also still struggling with what I think is a prolapse. And Ilex paste has not been available for a year, and my life has taken serious downturn without it. Now I have several ulcerations just inside and outside anus. I have tried almost every type of over counter creams to help healing along with Riley’s butt paste that I’d hardly call a paste. Nothing is working! Gastro has no other suggestions. Recommending. Cleveland Clinic since they have larger group to address pouch issues than Indianapolis.
1. I will be searching for other drs, so if anyone has had a difficult pouch and is anywhere near Indy, or Cleveland Clinic is okay, please share any drs / surgeons you know.
2. But please if anyone has any ideas about how to heal these ulcerations please let me know. I feel Ilex paste would help but I am out! Dr does not feel they need biopsies/ cultures, thinks just irritation from such frequent bowel movements. Pain is ecruciating and I’m fearful a temp ileo may be my only option.
thanks very much!
ljz