Dear Laura,
I feel so sorry for you, but I completely understand your pain and frustration. Like you, I have what my doctors call "pouchitis" and I have a minimum of 10 -12 stools a day. From what I've learned, that's about average. Not good for sleeping. On bad days I spend way too much time on the toilet.
I've been living with the pouch for 14 years and have accepted the negatives because I get to enjoy my grandkids and social and civic activities.
I suspect this is common for people with J-pouches. The surgeons don't warn us before we have the operation. I talked with one person who had it before I made the decision and he said it saved his life but he still had to worry about finding toilets in public places.
I love fruits, veggies and salads but limit how much I eat daily and generally try for a low-fiber diet.
Since the pouch is made from a piece if the small intestine my doctors said it should rightly be Crohn's and are treating it as such. I take 1 mg of Prednisone daily and 5 mg Lomotil twice a day. I have not tried Humira or Remicade.
Toni