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Regular Member

Date Joined Nov 2007
Total Posts : 111
   Posted 12/27/2007 1:09 PM (GMT -6)   
Just wondering if anyone has had a hard time getting their crohns disesae diag. properly.  Even with 7 colonoscopy biopsies all threw small intestine and colon, rectum etc.  they say either enteritis, colitis, ileitis, most with eosinophilia.  Havent had a biopsy come back and say crohns disease? But they have me on pentasa, steriods, humira injections? I know enteritis and ileitis mean crohns disease but other people i have talked to their biopsies say it loud and clear in theirs crohns disease???
All my other colonoscopies in the past have just said crohnic and mild inflammation but this is the first one that says all this stuff above in all different parts of the digestive track.  I was on no medication when i got this last one done so maybe that is why.  Just want to make sure i really do have it i guess because i have had a hard time in having dr. agree that i have it or not.
Also does anyone have atrophy in the small intestines?? And what do i do for that or is there something that im doing to cause it? 

Regular Member

Date Joined Dec 2007
Total Posts : 298
   Posted 12/27/2007 2:50 PM (GMT -6)   
Have you had a CBC lately, did that show eosinophilia? Usually eosinophilia is associated with parasitic diseases ... have your docs considered that? But it can also be caused by bad drug rxn

There is also a rare syndrome that mimics IBD

Veteran Member

Date Joined Mar 2006
Total Posts : 1169
   Posted 12/27/2007 2:59 PM (GMT -6)   

There really are three criteria for diagnosing Crohn's and ulcerative colitis. First is symptoms -- GI problems that include D, cramps, gas, possibly blood, etc., waxing and waning over time. Second is visual examination of the colon via scope and maybe the small bowel by camera pill and SBFT on X-ray. Skip areas of inflammation and possible ulceration point to Crohn's. while continuous inflammation indicates UC. Finally is biopsy -- but they are not always indicattive. A biopsy that shows inflammation deep into the bowel wall says CD; more superfocial inflammation generally means UC. In addition, there are complications (strictures, fistlulas, anal tags) that all point to CD. Finally there are some sophisticated blood tests (Prometheus test among them) that can also say with high certainty that you have CD. However, all these need to come together to really mail down a firm diagnosis. It's not uncommon for some patients to present with a history that says CD and/or UC and wind up being diagnised with one or the other or neither, maybe just irritable bowel, or celiac disease, or even a parasitic or infectious agent. The problem is that a half-dozen things can cause the classic Crohn's style symptoms (even gall bladder disease) and it takes some time in siome cases to really nail the diagnosis. The good news is that many of the medications prescribed for CD also help UC, and that over time as you respond (or not) to one or another med, the diagnosis becomes easier. There's a reason CD and UC are lumped under an umbrella of inflammatory bowel disease . . . they are so similar in many ways. That's why prednisone works for both -- it is an anti-inflammatory.

Give it some time and see how you respond to the meds and I suspect you will get a firm answer.

Regular Member

Date Joined Nov 2007
Total Posts : 497
   Posted 12/31/2007 8:02 PM (GMT -6)   
I have been going through a similar situation myself. I have only had one upper endoscopy and one colonoscopy done (had them both last month) and I have several areas of inflammation throughout my tract. My biopsies all came back as normal. My internist believes I do have IBD based on the symptoms I have had, both within my digestive tract and outside symptoms as well, but I don't think the GI doctor believes that I do because the biopsies did not point to either UC or Crohn's. I spoke to my internist the other day and told her about how the letter I got from the GI doesn't make it sound like she thinks I have anything, and my internist said that when IBD first starts, it can take time to show up in biopsies. She told me to meet with the GI, which my appointment is on Feb 5th, and that if the GI doctor does not treat it, then she will. She wants to see what the GI doctor has to say first. She also told me she has another patient who is in the same situation as I am, had symptoms but nothing positively said IBD and that the GI IS treating that patient with Asacol and it is working for them.

Best of luck to you and let us know what happens!

Regular Member

Date Joined Nov 2007
Total Posts : 114
   Posted 12/31/2007 8:13 PM (GMT -6)   
Yes it does take a long time to get a diagnosis, and for me I waited about 1-2 years while doing various tests, but had symptoms from the time I was 12 so about 6 years until a diagnosis. Ilietis is crohn's disease, it is just a diagnosis saying where your disease is specifically. For me when I was diagnosed it said ilieitis, with patches of colitis...but it all meant Crohn's Disease. I am sorry that you arent feeling well, and hopefully the meds you are on will help you feel better soon.
Diagnosed: 2003, age 18 (had issues with it since I was 12)
Meds for crohns: Off all meds for 1 month until I heal. Still on 10mg Prednisone, and 20mg Oxycodone every 3 hours, and Oxycontin 5mg every 12 hours. Also on a bunch of other meds for crohn's and my other glorious diseases.
Other medical issues: Hereditary Spherocytosis (hemolytic anemia) iron deficient anemia, polyarthralgia, ovarian cysts, Migraines
Surgeries: Spleen and gallbladder out at age 6, Tonsils and Adenoids out at age 21. Ileocecal (small bowel) resection on December 13th. Appendectomy during small bowel resection

Veteran Member

Date Joined Mar 2007
Total Posts : 900
   Posted 1/1/2008 2:45 AM (GMT -6)   
It took 13 years for me to be diagnosed. Because the disease waxes and wanes , you often end up seeing the specialist when you're having a relapse. It's hit and miss. The thing is to trust your gut feeling and continue with the testing until you get answers you are satistfied with.
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.

Regular Member

Date Joined Jul 2006
Total Posts : 35
   Posted 1/1/2008 5:32 PM (GMT -6)   
Or you can have a surgery and they can do a biopsy on the tissue they removed and determine it was positive for Crohn's Disease.....not at all hoping it comes to this for you.
34 Year old male-diagnosed with Crohn's at 15. 10 surgeries from 88-03. Have tried Remicade, Asacol, Imuran, Pentasa, and Prednisone and haven't really responded to any of them. Chronic diarrhea since 92. Due to such a short bowel a good day is 10 bathroom visits,25 on bad days. Also still have plenty of pain/cramping. I'm on Oxycontin 160mg and a Duragesic Patch 50. Just went on disability, can't work unfortunately. I live in New Orleans, LA."Nothing I see can be taken from me." -Trey Anastasio "A good day aint got no rain...A bad day is when I lie in bed and think of things that might have been." -Paul Simon

Elite Member

Date Joined Jan 2005
Total Posts : 24909
   Posted 1/3/2008 12:01 PM (GMT -6)   
It took about 8 or 9 yrs I believe to finally have a definitive DX of Crohns..........
Just as long for the PG that comes with the CD for me ..........

I am a constant with D every morning unless I end up with a blockage ...........
    Contribute today to support Healing Well Forums...Donate @
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 DX with Crohns ...Pyoderma Gangrenosum ..Anxiety /Panic.....
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           Wishing all a Better and Healthier New Year in 2008  
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Forum Moderator

Date Joined Apr 2007
Total Posts : 32602
   Posted 1/3/2008 12:39 PM (GMT -6)   

I know I have posted this before............it took one day for my hubby...surgery and the pathologist brought me down to the lab to see the piece of diseased bowel removed, showing me the detail.............

I got a bit light headed as it was my husbands small bowel in his hands.  But you get the positive answer pronto.

I hope you don't have to findout this way too.  :)


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