Thanks for all the replies!
Old Hat - You are amazing to remember that! I am actually going to Europe this summer for the first time since that trip many years ago when I stocked up on the asacol foam. I was thinking how nice it is not to need more of it. (Although, I have to say that I did just use Rowasa a couple months ago to treat some mild pouchitis. The Rowasa and VSL3 probiotic did the trick! So glad to avoid antibiotics.)
I did have a two-step process. I'm shocked that people sometimes do it in one-step. That seems insane to me -- no time for the pouch to heal before it's in use and no physical energy to run to the bathroom. The three-step, I understand, is necessary for some people who have special issues.
Drosselscott-- Hang in there! I felt discouraged too right after the takedown. I kept thinking that having colitis was not anywhere near as bad as what I was going through after takedown. The butt burn made me cry, it was so bad! I invested in every butt cream product too. It got much better about
8 weeks out. My two cent suggestions: try "liex" paste. It was the only thing that really helped. I took about
8 immodium a day and 2 Metamucil fiber wafers. Those wafers are a life saver! I have them every day. I wonder if they would have helped my UC. I could never make myself drink a fiber drink but the Metamucil wafer are very tasty.
The crazy thing with the surgery is that the first one, that really makes you debilitated, is in someway easier to deal with than the reconnection. You're physically exhausted, so you just give in to the situation. After reconnection, though, I felt that I should be better quicker. And it was hard to believe that running to the bathroom constantly and having butt burn was not a permanent thing. It's like the reconnection is harder psychologically.
By the way, going to the bathroom often doesn't bother me at all. I've stopped counting. It's probably about
6 times a day. I just go when I need to pee and then a couple extra times in the evening. Doesn't seem like a big deal, probably because I'm not in pain and it's not urgent.
UC for 20 years
Past Meds: You name it; I've tried it. (Lialda, Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine, Cortifoam, Asacol foam from Europe, 6MP, Prednisone,Remicade, Entyvio)
Alternative treatments I have had success with: Acupuncture, Hypnotherapy
Spring 2016 - J-pouch surgery needed due to dysplasia