I'm so sorry you're suffering! I've suffered also with this pouch, but never enough that I wished I had ulcerative colitis (or an illeostomy) again. I had UC for 20 years. I ended up with colon cancer! (My UC wasn't under control at all -I only recall using a Azulfadine as my medication then ... And maybe some prednisone from time to time… ) I think they have better medications today, but at that time, if you had ulcerative colitis for 20 years, cancer was a given. Not sure if that's the case anymore?)
If you're not getting any relief or help from your present doctor for your symptoms, you need to check with him or with a new Dr .
Has anyone told you your pouch is in good shape: Construction wise and pouchitis -wise?
Did you have ulcerative colitis, Crohn's or something else that led to your Jpouch??
Mycousin's son decided to take his pouch out because of his awful situation; he went to someone back east (Who is also very well known for revisions as well. It might be the doctor that I saw listed above may have been his Dr. as the name sounds familiar -the one that starts with an F). If you want I can check to see who that was. I'm not sure where you are.
One thing that has helped me was the purchase of a bidet for my toilet. It's really helpful when you get all the loose burning, multiple x a day "stuff". Everything is so sensitive then so it's really hard to wipe.You wipe less when you have a bidet plus the warm water is very soothing.
I seem to be going through a remission in terms of those symptoms you describe right now. It might be because I'm taking Cipro daily. I know you said it doesn't help you. Were you taking two a day? Are you taking Metamucil before breakfast and before dinner. I mentioned above I take one full tablespoon in the morning and one full T. at night of the regular Metamucil flavored product.
I do better on things like oatmeal, bread, applesauce sometimes and protein like chicken. Things that stuff you up!
I tried a Biologic call Stelara but it didn't help me. My doctor is talking about entivyo next. I am waiting because I'm having what I call a slight remission for now, as I mentioned above. Rather not be taking anything unless I really have to. Take enough already!
I truly hope you find some relief. I empathize with you because I entirely understand those awful painful, fire burning, crying, screaming out toilet events!! I think we all have very individual experiences with this, but those of us who have similar experiences to yours can totally relate to what you're saying... you are not alone. I hope you find some relief soon!