originally dx with crohn's disease, now ibs

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penncort
New Member


Date Joined Nov 2007
Total Posts : 6
   Posted 11/25/2007 3:37 PM (GMT -7)   
so I am worried that this will affect my disability down the road, I know many people with gastro problems have been misdiagnosed, but has anyone had any experiences with how it has affected their disability? I really can't work. It's hard to hold down a job when you are running to the bathroom every 5 minutes! help!

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 11/25/2007 7:20 PM (GMT -7)   
There is no way that you were misdiagnosed from CD to IBS because CD shows inflammation on the colonoscopy...maybe you're mistaken and what you have is crohns AND IBS, which is exactly what happend to me...crohns for 13 yrs and then IBS on top of crohns.

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


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 11/25/2007 10:49 PM (GMT -7)   
We hear more frequently that people who were originally diagnosed with IBS are later found to have Crohn's, but not usually the other way around, unless your doctors simply disagreed with each other. 
 
I feel your pain acutely - I run to the bathroom 20 times a day and no one can pinpoint the cause.  I am a medical student and it is rapidly becoming a serious issue.  I don't know what to do, other than speak to our student services department...
Co-moderator - IBS Forum


penncort
New Member


Date Joined Nov 2007
Total Posts : 6
   Posted 11/26/2007 4:30 PM (GMT -7)   

Well here's the kicker, GI doc had me do capsule endopscopy and since he saw no active disease, he said, "no Crohn's" and when I confronted him last week about this since I am in pain and going 20 times a day he said, oh this is better for insurance purposes and if he is out of town and I have a flair up, another dr won't just "throw" steroids at me etc. I had a bunch of stool tests, still have terrible left side pain and go back to see him Wed. I know what I say in black and white on those other biopsy reports from two different drs three different times and they all said CROHN'S!!! Oh, and he still wants me me to take my pentasa. Does this make any kind of sense? 20 years with this disease and I am still going through this nonsense? I'm pulling my hair out? Should I see another dr?

 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 11/26/2007 5:42 PM (GMT -7)   
Definitely see another doc and make sure he gets the copies stating CD...like I said it's not uncommon for one to have both CD and IBS, I'm living proof...and there are many others as well.

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


prof
Veteran Member


Date Joined Feb 2003
Total Posts : 1195
   Posted 11/26/2007 9:46 PM (GMT -7)   
Why couldnt he just say your CD was in remission????? I too am on SSD for my Cd and wouldjust KILL if I lost it!!!! I think the key work is "Active" talk to him and see if the wording on nay forms can be discussed. In the world of insurance companies.. it is ALL semantics. good luck


TDoern
Regular Member


Date Joined Jul 2006
Total Posts : 495
   Posted 11/27/2007 10:36 AM (GMT -7)   
Penncort - I was diagnosed with Ulcerlative Colitis in 2001 - after a colonoscopy. I am having gastric bypass surgery so they needed to check my intestines to make sure I was even a canidate for the surgery. After the colonoscopy this time the doctor told my husband and me that he didn't see any signs of UC - but that he had taken samples for biopsy just to be sure - and they came back negative. I too was then diagnosed with sever IBS-D.

It was a big score for following through on the surgery - but left me boggled as to how I could have been wrongly diagnosed - or it just disappeared as I'm going as often as ever now.
"When we come to the edge of the light we know, and are about to step off into the darkness of the unknown, of one thing we can be sure; either God will provide something solid to stand on... or we will be taught to fly.'"

"Cause when push comes to shove You taste what you're made of, You might bend, till you break Cause its all you can take; On your knees you look up Decide you've had enough, You get mad you get strong Wipe your hands shake it off, Then you Stand" From "Stand" by Rascal Flatts
_____________________________________________________________________________
Dx.: Polycystic Ovarian Syndrome, Ulcerlative Colitis, Chronic Inflammation of the Colon, Ruptured & Fused L4-L5-S1 w/pinched nerves, Degenerative Disc Disease, Chronic Costochondritis, Back Muscle Spasms, Asthma, Benign Tremmors (hands)


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 12/1/2007 10:17 PM (GMT -7)   
I have no ideas about disability, but I wanted you to know I am one who has been diagnosed with crohns and then undiagnosed. I can't tell you why all my testsl showed as CD and then never again. it is frustrating.
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and began Humira 9/07.

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