explaining crohn's to people

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kimmy2
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 10/6/2008 6:44 PM (GMT -7)   
I was wondering how ya'll explain our disease to someone who asks?  I don't know how detailed to get, and alot of times I feel as if I understate what we go through.  On the other hand you have people who I guess mean well, but have horror stories of people they knew who died from it.  I don't know how to strike that middle balance of helping them understand but not freak them out.  How do you guys answer the question what is Crohn's?  Tomorrow is our first on line chat at 7 est, hope many people can perticipate!!
diagnosed CD '03 after suffering for 10 yrs.
 
re-section surgery '05, Chronic Pancreas problems, joint and muscle issues (from Remicade)
 
meds been on-Asacol, Pentasa, Lialda, Remicade, Humira, 6-MP, Methotrexate, Rowasa, Prednisone, to many pain meds to list
 
Currently on-Cimzia, Cymbalta, and Klonopin(RLS)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 10/6/2008 6:50 PM (GMT -7)   
I simply tell them I have inflamed intestines caused by a disease called crohn's and it's like having a stomach flu everyday of your life.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 10/6/2008 6:59 PM (GMT -7)   
Someone wrote a good response once in a topic that had to do with know-it-alls we tend to run into. I wish I could remember the name of the thread!!! Does anyone remember?? The stomach flu is a good analogy so people can grasp to a small degree what we go through; but truly there is so much more they could not imagine!

LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 10/6/2008 7:10 PM (GMT -7)   
pb4 said...
I simply tell them I have inflamed intestines caused by a disease called crohn's and it's like having a stomach flu everyday of your life.

:)

That's basically what I tell people too.  And I also explain to them how a normal person without crohn's, their body fights off germs.  Well instead of our bodies fighting the germs, it fights our intestines and other areas from our anas to our mouth.
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone-  I am off of it!!   YAAHH!!! :-)   
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg every day
                           Wellbutrin twice a day
No Surgeries
 


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 10/6/2008 7:13 PM (GMT -7)   
Oh--the thread I was talking about was called "sticking up for yourself"

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/6/2008 7:24 PM (GMT -7)   
I say I have a digestive disorder.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 10/6/2008 7:54 PM (GMT -7)   
http://www.healingwell.com/community/default.aspx?f=17&m=1228920

Above is the thread for "Sticking up for yourself." Believe me...in plan on using some of the ideas listed in there, when the opportunity presents itself.

Also, if you read "The Spoon Theory" that explains a lot!

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/6/2008 8:59 PM (GMT -7)   
This forum has empowered me to be a bit more open with people, but until this year I'd just make vague comments about having an autoimmune condition that affected internal organs / all digestive organs and joints etc. If people were genuinely interested, they'd ask more, and then I'd be willing to be more open with people.
Co-Moderator Crohn's Forum.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 10/6/2008 9:17 PM (GMT -7)   
It all depends on exactly how much detail you want to get into, or the person listening really wants to hear, that's why I keep it short and simple from the start, then if more questions are asked I go into more details, not everyone wants to hear all the gory details.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)

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