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Crohn's school?

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Posted 3/31/2009 10:35 PM (GMT 0)
I was DX with Crohn's in December 2008.

I am always learning something new about this complicated disease and all the meds and there complications :S

Is there any school on-line or some books or something i could buy.

Please if you could give me some helpful info about how i can learn as much as possible.

My doc is not the most active guy in the world he just goes by ear, and i feel like i need to be one step ahead of him to get the best care possible.
Of course he is the specialist but he is not keen on checking my blood or take x rays and so on. He always wants to wait and see what happens and i just cant do that.

I have been coping okey with all of this but i feel like this is draining me and i am the kind of person who is always in control and got to know everything.

You guys have been a BIG help wink
Posted 3/31/2009 10:45 PM (GMT 0)
hi there. welcome!! (and sorry to hear you will be joining us -- my attempt at bad humor.)
first off this site is awesome. i was dx'd at 15 and lived and learned for quite a while- what worked, what didn't, what to eat and not...and especially to learn where every bathroom on the face of the planet is.
check out mayo's website and use google as a tool of course.
i'm sure many others will have some great resources to check out.
good luck to you!!!!
Posted 3/31/2009 11:42 PM (GMT 0)
A great book I read was Kitchen Table Wisdom by Rachel Naomi Remen
Posted 4/1/2009 2:38 AM (GMT 0)
Knowing everything is a good thing, but keep in mind that all you learn may not particularly pertain to your own unique case! That I learned the hard way and got pretty freaked out sometimes! I am the Mom of an IBDer
for 10 years now. My Daughter was diagnosed at age 17 and is 27 now.

I also could not get all the info out of my Daughter's GI like I wanted. I get it! They don't have enough time to give it to you all at once so you do have to research and read yourself and here I am 10 years later still doing so trying to keep up with all the latest.

Boards like this one in particular is a major wealth of wonderful info. No better info than from those who have been there, done that, walking in your shoes!

Being the newbie you are I would suggest the book "The First Year: Crohn's Disease & Colitis" by Jill Sklar to start out with.

Sorry you have to be here, but you will find great company, support and advice here.
Posted 4/1/2009 2:55 AM (GMT 0)
The "Kitchen Table Wisdom" book that homeboy suggested was the answer to prayer when I read it and need some encouragement. This sight is awesome too. Ask any questions you want, there is always someone with a good idea. The Mayo clinic site has the basics which everyone one need to now but like Mary said, everyone is different too. Good luck and God bless.
Posted 4/1/2009 12:52 PM (GMT 0)
Two books I've read: Straight from the gut and Fiber Menance---sorry I don't know authors, already returned to library. They were quite helpful.
Posted 4/1/2009 12:59 PM (GMT 0)
I think Dr. Rachel Naomi Remen does a very good job with dealing with chonic illness. Plus she has crohns disease herself. What I did was do a search for crohns disease and I interlibrary loaned everything that was listed.
Posted 4/1/2009 1:01 PM (GMT 0)
I get more from this site than Ive ever gotten from a book. Because this disease affects everyone so differently and to different degrees a book can only give you on overview which is fine if you know nothing about Crohn's but here you can always find someone who has dealt with exactly what you are dealing with and that is much more comforting and helpful than any book Ive read.....and Ive read many. Best wishes, Tony
Posted 4/1/2009 1:02 PM (GMT 0)
Wow dude your Dr. sounds a little chilled. What med you on?? have you had a biopsy, colonoscopy. How did they diagnose??  TB Tests?

That said it is very difficult to diagnose and Dr. usual use there judgement to DX and then if the treatment works then they confirm DX.

 

Posted 4/1/2009 1:40 PM (GMT 0)
https://www.crohnsonline.com/Register.aspx

If you go to this site, you can signup and get a free copy of a book that has 101 questions about Crohns and Ulcerative Colitis. It is writen by two GI docs from the Lahey Clinic with comments from a Crohns patient and UC patient. I have a copy at home, and go back to it when I have something going on that I don't know if its related to CD or not. Hope that helps.

Hugs
Gail *Nanners*
Posted 4/2/2009 8:25 PM (GMT 0)

Trad said...
Wow dude your Dr. sounds a little chilled. What med you on?? have you had a biopsy, colonoscopy. How did they diagnose?? TB Tests?


That said it is very difficult to diagnose and Dr. usual use there judgement to DX and then if the treatment works then they confirm DX.

Yes i have had a Colonscopy and gastroscopy, cam pill and x rays ct scan and so on.
But not thanks to my doc but thanks to the great hospital hehe ..

I like my doc but he is a little care free hehe..
Posted 4/2/2009 9:03 PM (GMT 0)

Hey there,

I was just diagnosed with CD in Feb 09. So this is all really new for me as well. I would highly recommend The First Year Crohn's Disease and Ulcerative Colitis by Jill Sklar (someone else mentioned it as well). It was the first book I got and I could not put it down. I got a lot of info from it. I searched for groups like this and found a bunch. Good luck.

Posted 4/2/2009 10:14 PM (GMT 0)
The internet has been a wonderful source of info about CD..I have looked at everything I can find from the quack site that promise instant cures to the AMA journel of medicine. Look at european sites and their treatment plans. Stem cell reseach has been successful over there. The europeans are a head of us in medical research. Keep up you head and energy up! There is hope!
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