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It is so frustrating that ER docs and GP's even many GI docs do not know very much about our anatomies and the complications thereof. And many nurses are at a total loss! I don't mind providing education and explanations when I am well but it is hard cramming in a course on j pouches, pouchitis, cuffitis, etc. when I am really ill. I am a widow so I don't have a spouse to be my spokesman. Do any of you have a good way of dealing with this lack of knowledge and awareness?
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Data sticks.
I walk around with 2 in my purse (just in case I lose one!) They have my whole medical file on them plus digital pictures, scans, diagrams and contact info.
At various times I also had a miniturized paper format with just the basics on it and the addresses to my surgeon's site etc...
Hubby is usually useless anyway in these sorts of situations so him saying, "its all on the data stick" works fine for me.
You can even create your own facebook page or blog or site and put the link on a plastified card...
Sharon
That's not a bad idea Sharon!!

Savannah, we all hear you. It is incredibly frustrating. One thing that has helped recently is the way the medical records are kept here, completely linked and categorised. My surgeon has flagged my file with certain VIPs (Very Important Points) so that those come up first when the file is accessed. Doesn't help away from home, of course, but does help considerably here.

For traveling I think I'm going to look into a data stick!

Gin
There are some really, really cool data sticks that can be worn as either keychains, necklaces or other types of jewelery...maybe something around the wrist or neck to be carried at all times and a second one in purse or pocket on a key chain (told you that I am paranoid!)...
I have my radiologis digitalise all of my scans and exams; he sends them to me and Dr C in Toronto and I just add them to my medical file in order so they know exactly what is/was happening inside of me.
Recent scare with severe abdominal and back pain could have been gallbladder remnants (there is something 'hanging' there according to the radiologist), nephritis or a blockage...the handy files helped...They knew what they were looking at and what to look for. My right kidney is stuck to my liver so seeing previous pictures helps them too.
Having a k pouch you really need to tell them to 'intubate the patient through the stoma and check regularly for blocages' or they are capable of sticking and ostomy bag on me and waiting for the 2nd coming!
Sharon

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