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I just got thru 2 awful visits to ER's (3 days apart) with tons of yellow, watery vomiting and diarrhea, terrible nausea ,major dehydration with ghastly full length leg pain, no fever.  Waited 2 hours for fluids.  I've had my pouch for 27 years.   What did they find?  Not much.  Maybe a virus? Put me on Flagyl and I finally got better.  Was whipped for 10 days, totally crashed.  Besides the awful treatment I got at the first ER I've now come across that I have UC in my paperwork.   5 times.  This is after I hand them a piece of paper with my detailed history, meds, etc.  OK, I know, most docs have no idea what a jpouch is.  Even lots of GI docs in smaller cities.   When I try to explain, no colon=no UC, they simply don't believe me.  I've had pouchitis from day #1.   This misrepresentation drives me totally crazy.  Along with the other mistakes I found in my paperwork.  I am furious, upset, sad and frustrated beyond belief.  I live in Lyon France and they aren't used to patients chiming in on medical stuff.  When I see my GI doc on Thurs. (was gone when this happened), I'll be asking for letters from him personally so I can carry them with me at all times so other medical staff take me seriously, act promptly and don't treat me like a senile 64 year old woman.  Thanks for having this place for me to let it rip.

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There are several ways to call it. Crohn's or indeterminate colitis or pouchitis (+ileitis?). My chronic inflammation also started after takedown, almost 20 years ago. In fact my inflammation of the pouch and terminal ileum looks much like UC, they once even doubted that my complete colon had been removed after a pouchoscopy.

Varying the wording of your diagnosis can help to get a therapy approved that can only be done for UC or Crohn's specifically. For me all of those failed, the only thing that helped from the beginning were antibiotics.

Hi SaraKay, I also live in France and thoroughly understand. It is believed here that even if your colon was removed, you still have can just show up elsewhere...Keep your medical file on you, on a USB key and on your phone as a picture file.

Not all ERs are created equally...Start by saying that you are handicapped...then that you have no colon, had UC and then answer the questions...Ask for a specialist....

Good luck in France, it is never easy!

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