- Location
- Michigan, USA
My DD currently on her second Ileo. It is a long never ending surgical story. Anyway long story short she had a jpouch it failed her due to too much rectal cuff being left or possibly she has Crohns on top of that. She had a loop Ileo placed a few months back and since has been pooping out her pouch still as well due to ostomy retractions. The jpouch is failed it was huge and broken when they saw it last. She now has diversionary colitis. Cannot empty jpouch properly she is on Cipro and Flagyl and hydrocortisone enemas nightly. Recently had a Cincinnati second opinion and they said she has UC but to treat her like a Crohns case because she is indeterminate ATM. Doctor suggested end Ileo with option to reconnect later. She has had 6 surgeries in the last year and her surgeons here want to do a SIAA straight pouch with a tiny mucous fistula next to Ileo. She also possibly has Primary Sclerosing Cholagitis which is a pain to have with a pouch. We don't know if it is real. (Sorry this is a getting longer than I intended.)
Is there anyone with a Proctocolectomy whom has an IRA or SIAA that can give me some encouragement? I am aiming at an end Ileo but she is 5 years old so the doctors said I shouldn't do that to her and are giving me some guilt about not wanting the SIAA even though they said we can keep the Ileo for as long as we want. I know of a few people that had all sorts of issues with a mucous fistula. I haven't heard any success stories and unless I get some real encouragement I will probably go to the end Ileo because I cannot put her through years of anal leakage and more surgeries for obstructions and issues.
Please share your story good or bad. I need both. I am almost certain I want to do an end Ileo and reconnect later but basically they are saying it might be her only shot at getting connected later to do it now. (Cincinnati agree it might be her only shot) Surgery is on Dec 3rd.
If you know of anyone on here that might be able to help me please tag them so they find my story.
Is there anyone with a Proctocolectomy whom has an IRA or SIAA that can give me some encouragement? I am aiming at an end Ileo but she is 5 years old so the doctors said I shouldn't do that to her and are giving me some guilt about not wanting the SIAA even though they said we can keep the Ileo for as long as we want. I know of a few people that had all sorts of issues with a mucous fistula. I haven't heard any success stories and unless I get some real encouragement I will probably go to the end Ileo because I cannot put her through years of anal leakage and more surgeries for obstructions and issues.
Please share your story good or bad. I need both. I am almost certain I want to do an end Ileo and reconnect later but basically they are saying it might be her only shot at getting connected later to do it now. (Cincinnati agree it might be her only shot) Surgery is on Dec 3rd.
If you know of anyone on here that might be able to help me please tag them so they find my story.