allykat i hear you as always..i am going on 10 years with this dysfunctional pouch..things work for a time and then they don`t..its apparent ally very complicated and no one has figured it out for people like us..i too as you know have had some success with various things..the most successful the diet scd for 6 months i was free of antibiotics and as good as it was going to get and just like that it stopped!!! i rotate antibiotics because i have to but over the years they all have become less effective.. a good day may still means really going a lot and because of that having itching and irritation that requires wipes and ointment almost each time..sometimes i soldier on pretty good but when i have other things also going south it really makes it pretty hard to stay up...i no longer am carb free just gluten free..figured i would stick with eliminating w heat and potatoes..and i do watch my sugar but am not completely sugar free..at least by doing that i cut down on my consumption of nuts which i think had their own set of problems..not as digestible and caused me more issues coming out..i do however with my newer diet of allowing carbs such as rice and gluten free bread find my output more solid which in turns helps somewhat with itching etc..i am freer with fats as well...
nothing new has really come down the pike in ten years and its really depressing...i am older than you and wondering if anything will in my life time
do have a question for you that puzzles me you say your doctors refuse to let you give up your pouch..i cannot understand that...i am sure if i persisted to want to have pouch removed i would find doctors to do it..what am i missing here in what you say..i would think they would if you wanted it for better quality of life be willing to do it..