Hi- looking for some peoples advice/experience here.
UC with J-pouch diagnosis over 11 years ago. Quickly developed chronic pouchitis and was put on Cipro permanently. Worked pretty well, but recently been having a lot of trouble, have had two blockages, and stomach has been a mess with overnight accidents, butt pain, etc. Doctor is now thinking it may be Crohns and I am having an MRI in a couple of weeks. In the meantime, I am struggling. I am in my 3rd steroid pack (methyipredinisolone) and will probably need to stay on them until after MRI So that's over a month on steroids (5-6 packs) while I wait for thoughts on next steps. Is that really bad? I know steroids are not great for you.
Also, I am scared that I am going to have trouble feeling any better and I will end up getting very sick like I did when I was younger. I can't stay on steroids for obvious reasons, and besides when I had UC they just stopped working too. I got so sick back then, had tried Remicade, it only worked for a few months, and ultimately had my colon removed and got a j-pouch.
Regardless of the diagnosis of Pouchitis or Crohns, whats going to happen to me now that steroids are no longer working!
Thanks, any experience and suggestions welcome on where I go from here and what to expect....