Confusing Conoscopy Results and Diagnosis

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Regular Member

Date Joined Apr 2005
Total Posts : 386
   Posted 3/6/2009 5:56 PM (GMT -7)   
Hi, I have had severe Crohn's for almost 10 years now. I have been on Remicade and now on Humira.
My question is actually about my twin sister (we think we are fraternal, test results were lost when we were born).
For the past 7 years, she has had bouts of stomach pains, some diarreha, constipation, mucus, joint pain, low grade fevers and an overall feeling of yucky. She had a sigmoidoscopy 7 years ago and her HMO primay doctor told her she had Proctitis and when she has had flare-ups he treated her with enemas. He sent her for a colonoscopy with a G.I., and his findings were no Crohn's, Colitis or Proctitis.
Her primary doctor (who I don't have a lot of confidence in) still tells her she has Proctitis, so every time she doesn't feel well, she believes that this is what it is. I understand that he has come to this conclusion because of me, and we have a brother, neice, and nephew with IBD.
She went for another colonoscopy yesterday with the same G.I. who performed the first one, and again, she had remarkable results with no evidence of any past or current imflamation. The G.I. assured me that he would have seen some type of scare tissue or evidence if her symptoms were caused by IBD even if she is currently not in a flare-up. He  believes that she has Irritable Bowel Syndrome and that the symptoms are so similar that it can be hard to tell the difference. When I shared with him what her primary doctor has told me, he just shook his head...kind of in disbelief.
My sister is still confidenced that the reason the G.I. is insistent that she does not have IBD, is because he has never scoped her during one of her flare-ups.   
I would appreciate any feedback that anyone has. Thank you so much!!
P.S. I didn't think that you could have mucus with Irritable Bowel Syndrome?? Does anyone know?

Regular Member

Date Joined Nov 2008
Total Posts : 192
   Posted 3/6/2009 10:15 PM (GMT -7)   
It takes a long time for some people to be diagnosed with Crohn's. Did they take biopsies during the colonoscopy? If they did, examination of those samples would be a good indication of whether she's had Crohn's in the past.

I was first diagnosed with UC, then IBS, then Crohn's. My UC diagnosis was based on an ulcer in my lower intestines and the passing of blood; IBS was diagnosed without a colonoscopy; 10 years later my last colonoscopy showed several ulcers all thoughout my colon and the biopsies showed a history of the disease. My bloodwork is always fine except for vitamin deficiencies.

Getting diagnosed properly is half the battle. Make sure she gets copies of the colonoscopy results (and hopefully biopsy results if they do them), and maybe get a second opinion. Some doctors are really proactive and will rule out IBS by treating you with Crohn's meds. If you improve on the meds, then most likely it's not IBS (either that or there is a placebo effect). If she wants a more aggressive doctor, I am sure she can find one. Good luck to her!
Diagnosed with Crohn's Disease; Meds: Entocort & Asacol; female in late 20s.

Regular Member

Date Joined Oct 2008
Total Posts : 79
   Posted 3/7/2009 1:27 AM (GMT -7)   
is that true how if the meds help then it isn't IBS? i'm taking salofalk and had my doasge doubled a few months ago and my symptoms have improved i think. but i keep convincing myself that it's IBS and not crohn's, my GI and doctor are 99.9% convinced otherwise! they say it can take years for anything to show up internally. just wondering would they treat someone with salofalk if they thought it was IBS?

Regular Member

Date Joined Feb 2009
Total Posts : 39
   Posted 3/7/2009 3:32 PM (GMT 0)   
A blood test IBD serology 7 can give her accurate diagnose between crohns or colitis.

Regular Member

Date Joined Apr 2005
Total Posts : 386
   Posted 3/7/2009 11:50 AM (GMT -7)   
Thank you for your responses. The G.I. said that he did not need to perform any biospies because he did not see any reason to. No imflamation, no scar tissue, no signs of previous ulcerations, etc., The pictures look like a healthy colon to me (in comparison to my horrific looking colon).

Thanks Kunglao, I will recommend for her to have this test.

Thanks again!

Regular Member

Date Joined Feb 2009
Total Posts : 62
   Posted 3/7/2009 10:14 PM (GMT -7)   
Just curious, has your sisters doc ever done an endoscopy? Or upper/lower GI series? All of her symptoms sound exactly like my Crohn's issues. Maybe the diseased area is located someplace that a scope can't reach. CD is tough diagnosis. If her symptoms continue, perhaps she should seek a second opinion from a different GI doctor.

Good luck,

Crohn's Disease - 29 years
Diagnosed at age 10 in 1979
1st ileosecal resection 1989
2nd colon resection 1993
Chronic "D" and arthritis
Chronic rectal stricture with colonoscopy every 3 months to dialate
Insomnia since 1980 - I love my ambien!
SCUBA diver, Master's degree student, college graduate, Pet therapist

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 3/8/2009 12:28 PM (GMT -7)   
If your sister is a very mild IBDer then it's possible that there may not be noticable signs of scaring and such...has she had blood and stool tests done?

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

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