Yes that's me. I just received the diagnosis last week and it has been a bitter pill to swallow. You all know what we go through to adjust to a J-pouch. It's not an easy proposition. I had my takedown in 2014. Until now I just thought the way I felt was my new normal. I was still have frequent movements. Still uneasiness in my gut. Still careful with my diet but never really did reach a controllable state with my pouch. Now, I was fine with that but after the second fistula I just had they took a look and confirmed that I have inflammation and stricturing in my small intestine and my pouch is definitely inflamed. While the initial diagnosis was hard for me to take I am hopeful that Stelara will get me into remission and I will finally get to see what normal is with a J-pouch. I really hate having to get back on meds but now... I haven't a choice. I will say I am a bit relieved that there may be a better quality of life for me. While I appreciate the pouch every day it has not been easy. Hopeful for improvement!
I would be interested to hear anyone else who has had this happen. I am seeing a fantastic pouch specialist at UNC Chapel Hill. I should have been seeing him 2 years ago in my opinion. He has seen these cases before and been able to help those people.