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Crohn's Disease
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Posted 9/19/2007 1:39 AM (GMT 0)
I have struggled with GI issues for my whole life, partly because it took 24 years to get a diagnosis for celiac disease. Last year I was misdiagnosed with ulcerative colitis (biopsies later showed that my colon was fine), and when colozal increased my diarrhea, they put me on Asacol. Within 5 days of going on Asacol, I was in the hospital for paralytic ileus (paralysis of the colon) for eight days on a liquid only diet, which my new doctor believes was caused by the Asacol. My whole colon looks clear, right up to the ileum, and in my upper GI Xray, they said that they could not visualize the whole small bowel and they couldn't visualize the ileum at all , but they suspected it was normal. I recently started going to a new GI at Hershey Medical Center, who specializes in celiac disease, and she seems reasonably certain that I have Crohn's in addition to Celiac because some of the symptoms I'm having just don't correspond to celiac. She's going to do an upper endoscopy and a capsule endoscopy--I've had these before, but not since these symptoms started. Are these tests standard for a Crohn's diagnosis? My doctors when I was hospitalized said that the inconclusive upper GI was enough to rule out Crohn's; is that true?

I'm feeling ok for now, but that is only recent. Here are the symptoms I experienced from Thanksgiving until the summer: bloody stools, diarrhea, foul-smelling stools, abdominal pain, B12 deficiency, weight loss, fatigue, osteopenia (diagnosed in March), sores all over gums and tongue, achy joints, numbness in feet

I'm 27 years old and my celiac disease is completely under control--not only do I follow the diet religiously, but my blood tests show no antibodies and haven't since a year after going gluten free.

My other questions is does it matter that I'm not actively bleeding now? Is that going to effect my tests? I'd appreciate feedback from anyone else who had difficulty getting a diagnosis.
Posted 9/19/2007 2:28 AM (GMT 0)
If they can't visualize the ileum then they have nothing upon which to base the suspicion that it is normal. Small bowel follow throughs are notoriously unreliable at visualizing the terminal ileum, which is the most common site of crohn's disease activity.

Capsule endoscopy is the gold standard for assessing disease in the small bowel.

Blood in the stools (especially if it is bright red) is usually not indicative of disease in the small bowel. Usually bleeding that occurs in the small bowel is discerned as occult blood. It is so thoroughly mixed with the feces and has turned black so that it is often only detectable by laboratory examination.
Posted 9/19/2007 12:09 PM (GMT 0)
Thank you for your response. I didn't know that the small bowel follow-through was such an unreliable test, though I did think it was strange when they said that they couldn't see the illeum, but thought it was ok. Although I sometimes have red blood, it is generally more a problem black stools or dark brown slimy blood clots. The stool samples did show occult blood, and they did a colonoscopy during a period of active bleeding, and it showed no source of blood in the colon. This is why my new GI suspects Crohn's.
Posted 9/19/2007 4:50 PM (GMT 0)

lereminetlove...that sounds exactly like what I'm going through right now.  I have been bleeding for over a month now just like you discribed, and this has never happened to me while I've been on my meds, and I've never had other symptoms while bleeding either, I was very unwell, and my GI office didn't seem too concerned they even cancelled an appt. on me sad    So I finally got sick of phone tag, went to my family doc and am waiting for a referral to a clinic at the hospital that deals strictly with IBD.  Even my family doctor said that bleeding is IBD not IBS.  It's very frustrating isn't it...I even had the same result with my small bowel follow through as you did!  Mouth sores I was also told by my GI are a symptom of Crohn's too, I get thost as well, but not nearly as bad of as often since I started taking probiotics...maybe give those a try?  They also helped me feel better.  I hope that you get some answers soon...l can totally understand what you are going through!  Not sure about the bleeding and how it'll affect your tests though...sorry.  Let me know.

Take care!

Paula :-)

Posted 9/19/2007 5:33 PM (GMT 0)
Paula, I'm sorry to hear you're going through this as well. I've thought about probiotics before, but I haven't taken the time to put the research into finding the right one for my specific problems--definitely something I need to do. I'll let you know how it turns out. I hope that you get the answers you're looking for as well. Sometimes I just get frustrated with the doctors who dismiss what seem to be fairly serious symptoms, but I really like my new doctor even though I wasn't thrilled with the idea that this could be crohn's, I'm relieved that someone seems to have some potential answers for me.

You take care as well
Nicole
Posted 9/19/2007 7:27 PM (GMT 0)
I don't think bleeding is a symptom of IBS unless it is from a hemmhoroid(Sp). If you have occult blood your health care team needs to keep looling until they find the problem. Hope the capsule endoscopy provides the answers you are looking for.
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