I'm confident the decision to go to a permanent ileostomy is the right one because its the healthier one among other things. Aside from being healthier if I get the ok from the docs to proceed with the surgery (going to the cleveland clinic next week just to be certain that a permanent ostomy is the answer and that I don't have crohn's or IgG4 pouchitis) I'm sure it will reduce my pain while in some cases providing more freedom. Though I'm not naive and know its not without complications having done it for just 3 months between surgeries. I'd like to know from those who made the decision to go to a permanent ileo whether or not you are happy with your decision.

I have no intention on letting it slow me down or limit me in any way, so I'd like others to chime in on what limitations if any they have placed on themselves.

Thanks

ok I have what I'm calling a permanent temp. ileo. Basically a disconnected failed jpouch, jpouch still there because I was too sick to go to permanent end ileo all in one operation. Also CC docs say I can decide between pouch redo, or permanent ileo. Regardless its been about 15months with this ileo and life is so much better. Ran two half marathons and training for my third. Eat most anything. Go out with my friends. Went on vacation. Traveled on airplanes. Mountain bike. Yes, I have to manage ouputu/dehydration, etc.. And still suffer from fatigue and joint pain and output from diversion pouchtis. So time to get the pouch removed. This last 15months has shown me that life can be just fine dealing with a permanent ostomy. And why waste more time with a jpouch redo operaton with huge potential for failure. My jpouch failure days were worse than UC days.

That's exactly what I'm hoping for. Thanks

questions.. did you manage to setup an appt with a surgeon at CC when you are there? Its my understanding that jpouch removal op is major major major and you probably want to be sure you have the best of the best slicing you for that one.

No can do on getting the permanent ileo in Cleveland. I live in Charlotte, NC. I believe that my surgeon who handled my jpouch surgery is more than capable, though he has stressed that it is a major surgery as well as a permanent decision, which is why he wanted me to go to CC to see Dr. Shen first.