Crohn's school?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Veteran Member

Date Joined Jan 2009
Total Posts : 829
   Posted 3/31/2009 5:35 PM (GMT -6)   
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
24 year old female
Diagonsed with Crohns disease in December 2008..
Medication - Asacol, Remicade, Entocort

Veteran Member

Date Joined Mar 2005
Total Posts : 1289
   Posted 3/31/2009 5:45 PM (GMT -6)   
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!!!!
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently tapering prednisone (15 mgs) and I've been on 6_MP for 2 months.
In the middle of a bad flare now for 6 months...lost almost 30 lbs.

Veteran Member

Date Joined Dec 2005
Total Posts : 637
   Posted 3/31/2009 6:42 PM (GMT -6)   
A great book I read was Kitchen Table Wisdom by Rachel Naomi Remen
CD dx @ 13 (1987)
Prednisone 8mg every other day
Imuran 100mg day -- Stoppped March 09
Celexa 20mg day
Pain Meds -- Morphine Sulfate
Vitamins + B12 Injections Once Per Week
Gallbladder Resection -- 3/19/09 -- Fingers crossed

Veteran Member

Date Joined Jan 2003
Total Posts : 1668
   Posted 3/31/2009 9:38 PM (GMT -6)   
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.

Veteran Member

Date Joined Jan 2006
Total Posts : 768
   Posted 3/31/2009 9:55 PM (GMT -6)   
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.

Regular Member

Date Joined Jan 2009
Total Posts : 80
   Posted 4/1/2009 7:52 AM (GMT -6)   
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.
age 41,diagnosed with CD in 11/07, Rx Pentasa 4000mg and Remicade.

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 4/1/2009 7:59 AM (GMT -6)   
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.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Regular Member

Date Joined Aug 2008
Total Posts : 305
   Posted 4/1/2009 8:01 AM (GMT -6)   
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
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 8 months ago. Now on Remicade, Flagyl, B-12 injections and iron. Feeling much better!
God Bless. Tony

Regular Member

Date Joined Mar 2009
Total Posts : 24
   Posted 4/1/2009 8:02 AM (GMT -6)   
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.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 4/1/2009 8:40 AM (GMT -6)

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.

Gail *Nanners*

Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined Jan 2009
Total Posts : 829
   Posted 4/2/2009 3:25 PM (GMT -6)   
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..
24 year old female
Diagonsed with Crohns disease in December 2008..
Medication - Asacol, Remicade, Entocort

New Member

Date Joined Mar 2009
Total Posts : 3
   Posted 4/2/2009 4:03 PM (GMT -6)   

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.

Regular Member

Date Joined Apr 2009
Total Posts : 51
   Posted 4/2/2009 5:14 PM (GMT -6)   
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!
Over 30 years experience! Dx 1976, surgery every seven years, the only effective long term drug has been prednisone.

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, October 22, 2016 4:33 PM (GMT -6)
There are a total of 2,710,245 posts in 298,876 threads.
View Active Threads

Who's Online
This forum has 153424 registered members. Please welcome our newest member, TatianaC7.
310 Guest(s), 14 Registered Member(s) are currently online.  Details
Old Hat, XxdavexX, TatianaC7, AmyAzz, Girlie, reminder, Marlenelut, Paxton, Sean.scott256, ravdeep, gumby44, saozemko, Bacon Girl, NotQuiteAntonio

Follow on Facebook  Follow on Twitter  Follow on Pinterest

©1996-2016 LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer