Thank you All, for all your comments! Much appreciated!!
To address your post up above Arlene... I’m sorry it’s been so hard. I’ve suffered this year too. It’s a bit scary. I don’t know how you did Cipro for so long. I would if I could. I know it helps but i Can’t tolerate it very well. As for the prednisone, after I stopped - I got my symptoms back just a little. So although prednisone helps for a short time, it’s not a cure. I wonder if they took out the old pouch and built a new one if that would get rid of our disease and give us 20-30 more years with a k pouch with no symptoms. I know that may not be realistic if we don’t have enough intestine left. It is also a big surgery and I’m not sure if I could do that. Or... if the pouch needs to come out will we get the disease under control? If we take it out will those painful Crohn’s -like symptoms then go away? The pouchitis would, but would the mouth sores and joint pain too? Of course, I don’t want to lose my k pouch! Just trying to figure it all out. I hope you and everyone else with pouchitis finds the things that will help put it into remission. Marce