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Infographic of my Crohn's story using medical records

K

kss

I put together an infographic of 10 years of my Crohn's disease. It covers 10 years and includes a lot of medical records. It can be found here: http://bit.ly/s1kUcJ

You'll find all the drugs I've been given, the expenses, some personal information as well as how many 50mg pills of azathioprine I've taken. You'll also find out how many days of the last 10 years I've spent in the bathroom!

Check it out and happy Crohn's and Colitis Awareness Week!

:ysmile:
 
xX_LittleMissValentine_Xx

xX_LittleMissValentine_Xx

Moderator
Location
Reading,
This is amazing!
I have only had a quick look through and looked at the diagrams. But it is amazing how much data and info you have!
Also interesting about the costs, thats not something I have much idea of being in the UK and having the NHS.
Do you mind If I link to it from my blog at some point?
 
PsychoJane

PsychoJane

Moderator
Wow :)
You definitively have a lot of papers on your hand. I'm pretty much in the same position Holy is,luckily, as far as healthcare go... I end up not really knowing how much things that happens to me cost but I think it wouldn't be too pretty if I were to make a cumulative results sheet like that. It must have been so long! Glad to see you are doing better year after years :)
 
Emily

Emily

Location
Pittsburgh, Pennsylvania
Wow! This is really cool and I'm sure useful for you. I would love to have this sort of record. I sorta wanna make one myself, since I'm already forgetting things..

Anyway, very impressive record keeping. And most importantly, I'm glad to read you're doing okay after everything.
 
DustyKat

DustyKat

Super Moderator
This is fab! I really enjoyed reading it. Thanks so much for posting!

May the good times keep on keeping on...:goodluck:

Dusty. :)
 
K

kss

Hey Feather, I collected all my records by making requests. It took months to collect it all. And I got most of them, I think. So nope, I wasn't collecting them along the way. It was all inspired by e-Patient Dave's TED talk. They also let me be a guest blogger a couple of weeks ago on the e-Patient blog. You can find it here: http://bit.ly/unKZIs
 
David

David

Co-Founder
Location
Naples, Florida
I see you were on depression meds when it was in fact B12 deficiency. What's the story there? I assume they never tested for B12 and nobody told you that having all that intestine removed just about guaranteed your a nice deficiency? How long did you suffer from that and how did you finally figure out that it was B12?
 
K

kss

Thanks for noticing! I actually wrote about that in the benefits of visualizing your medical data post.

The story is that nobody ever mentioned it to me. My level wasn't checked for just over 5 years after being diagnosed. It was around 100. And then another test it was at 199. Both are really low as I"m sure you know. But then I got shots and didn't need any sort of depression drugs anymore.

btw that was before surgery. It was the GI doc that recommended I get surgery that did the B12 test. So those low test results were before I had any small bowel removed.

It's such a big deal that B12.
 
Suvii

Suvii

An old fart from North!
I have every single paper from 1998 to this day conserning my Crohn's disease. All the docs appointments and scans and other tests. I love to read them :D And I have my own file where I can check anything that I want when ever I want.

I have to say that I'm so happy I live in Finland, b/c we have so awesome health care here. If I go to E.R. for example, it costs about 38 euros including all the tests and scans etc. That's it. In the hospital one day costs about 33 euros. All the tests are free for us in public hospitals.

Your quality of life looks good now. Keep that direction! :)
 
K

kss

Suvii, How are the electronic health records? I heard it's very good in Finland and all the records are kept electronically. Can you see your own electronic records?
 
Suvii

Suvii

An old fart from North!
Different medical organisations use different kind of EHR's. There's a national "eArchives" where all the medical information from different systems are sent and therefore they can be used national. Also prescriptions are electronically archived which guarantees safety of medicines individually.

The eArchives is a big process and it takes time to add all the information from different systems.

Here's a raport from 2009 where you can see where Finland stands in conserning the EHR: http://www.itif.org/files/2009-leadership-healthit.pdf
 
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K

kss

Wow, thanks so much. I read all about Denmark's electronic health system one time. It made me want to move there. I figured Finland was the same but it's not quite. But very similar. In that report the U.S. ranks last on everything electronic. My last GI doc just got an EHR system in 2010. It's so sad cause he's doing good compared to his American colleagues!

Thanks again I'm going to look at this report a little more closely now... :)
 
Suvii

Suvii

An old fart from North!
No problem!

I'm working in a hospital and I'm writing dictations to an EHR. I really love my job, it's so interesting :)
 
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