Were any of you told you had Crohns disease, then later told it was IBS?

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Veteran Member

Date Joined Mar 2007
Total Posts : 900
   Posted 7/18/2008 7:10 PM (GMT -7)   
Hi everyone. I usually post on the CD forum.  2 weeks ago I had a colonoscopy. I had been told 13 years ago by a GI that I had crohns disease after a multitude of tests. I was put on Sulfasalazine and then had to move cross country. I managed ok with the meds and had flare ups but managed them by going on a liquid diet for a couple of weeks until things settled down again. Never had a colonoscopy here because there just was no time to see to myself with all that was going on. So one month ago, I started having severe bloody diarrhea. 3 days of nothing but blood. I saw a GI who first did a sigmoidoscopy , then endoscopy , then colonoscopy.... then he says to me. " I don't see any signs of CD... I think you just have IBS. ! I was furious! He still hasn't found the source of the bleeding... tells me to stay on my CD meds...because they seem to be doing the trick.?Come see me in a couple of weeks we'll have a good long chat, he says. Well, I called his office and he is booked solid until september!
Have any of you had similar experiences? I don't know what to think. I know I still have CD from all the symptoms I have, I'd been suffering for at least 13 years before the first GI diagnosed it... that was 20 odd years ago.... how can a disease be there one minute and not the next.?
Confused old Mary
51 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.,RLS, arthritis

Forum Moderator

Date Joined Nov 2003
Total Posts : 7122
   Posted 7/18/2008 8:30 PM (GMT -7)   
Mary, I suggest you find a new GI ASAP. Bloody diarrhea is NOT a symptom of IBS as you know. The bleeding could be coming from your small bowel. The scopes can only go so far and that leaves about 20-25 feet "unexplored." If you insurance balks, tell them you need a second opinion. Obviously this guy is not the right "fit" for you and your problems.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.

Veteran Member

Date Joined Mar 2006
Total Posts : 1451
   Posted 7/18/2008 8:46 PM (GMT -7)   
find a Doctor that will do the camera that you swallow as it is used to find where the bleeding is coming from. As someone said bloody diahrea is not a symptom of IBS. The fact that he bothered with a sigmoid before the colonscopy to me is reason enough to change. With bleeding it should have been right to the hard stuff.

Veteran Member

Date Joined May 2005
Total Posts : 511
   Posted 7/19/2008 5:04 AM (GMT -7)   
I was the same way. 8 years ago I was told I had CD and put in the hospital after a scope. I then switched GI doctors and ever time
in the past 8 years that I have had problems, he has done a scope and found nothing wrong. Well finally I go into another flare the
first of May and he does a scope last month and FINALLY see's my CD. He pretty said that he believes I have both CD and IBS.
We know when I have problems and my joints don't flare up that its just IBS and 2 weeks of Cipro get me back on track.
But when I have problems and my joints flare up with pain that my CD is flared up. But like I said, I was the same way.
He told me he wasn't 100% sure I had CD. Ok well then why 8 years ago I was told I did have it and put in the hospital?
I was mad and confused and upset. It just didn't make sense.
Like the others said though, bloody diahrea in not symptoms of IBS. That is most likely CD.
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS too
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 20mg tapering  Back up to 30mg  :-(
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
No Surgeries

Regular Member

Date Joined Jan 2007
Total Posts : 95
   Posted 7/20/2008 11:43 AM (GMT -7)   

I was diagnosed with Ulcerative Colitis about 6 years ago.  Went for a colonscopy about four weeks ago and was told my UC was in remission and I had IBS and hemorrhoids.  I have pain and bloody D as well.

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 7/21/2008 12:16 PM (GMT -7)   
CavsFan said...

I was diagnosed with Ulcerative Colitis about 6 years ago.  Went for a colonscopy about four weeks ago and was told my UC was in remission and I had IBS and hemorrhoids.  I have pain and bloody D as well.

If you have bloody D that isn't from your hemorrhoids then your UC likely isn't in remission...there is no internal bleeding associated with IBS alone (with the exception of bleeding hemmies).



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

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