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05-03-2012, 06:40 AM   #1
Stephy Chelle
 
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Camera pill test results

So I FINALLY got my camera pill test results. After 5 weeks! My doctor called me last night. He said other than my terminal ileum, the rest of my small intestine looks good. Terminal ileum is moderately inflammed but we knew that even before the camera pill test. He ran through the results of my colonoscopy again just talking out loud trying to come up with a diagnoses. He says the pattern of inflammation, being just in the terminal ileum and my colon being inflammed in patches and not all the way through suggest to him I have Crohns but for him to actually diagnose me he needs more concrete evidence and we may never find it so am I stuck with this undiagnosed bull shit??

Is ANYONE else in my same boat? Where your inflammation is patterned with mine and you haven't been diagnosed yet??
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Symptoms 15 years
Inflammation in colon & terminal ileum
Hiatal hernia
Diagnoses thus far: intermediate colitis until camera pill test is done
05-03-2012, 11:54 AM   #2
Cat-a-Tonic
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Hi Stephy, if it's any consolation - my pill cam found NOTHING. Neither did any of my other tests. I know I must have inflammation somewhere in or near my terminal ileum as that is the area where my pain is normally located, plus I responded well to drugs such as Entocort and Asacol which work primarily on the TI. But, I feel your frustration. It's so aggravating when you feel awful and the test finds nothing or something very minor, it doesn't match up at all when you compare test results vs. symptoms.

I'm presuming you had a colonoscopy already? Did they take lots of biopsies, particularly in the TI area? If not, another scope might not be a bad idea. You could also ask them to stain your biopsies for mast cells (if you had a previous scope, they might still have your biopsy samples and could stain those). Some doctors won't diagnose without a positive biopsy, even when all other signs point to IBD.

Another thing to think about is asking for a trial of medication. That's the boat I'm in, I tried prednisone and it worked wonders for me, so my GI put me on Entocort (similar to pred but not systemic and fewer side effects) and that put me in remission, so now I'm on Asacol to maintain remission. Of course, now that I'm in remission, I can't have any further tests until I flare up again, so I am in undiagnosed limbo indefinitely. But honestly, I feel very good most of the time so I don't mind too much. Just another thing for you to think about - if you have definite inflammation then I would think most doctors would be okay with trying you on some of the milder meds.

Good luck, I hope you can get some answers soon. Are there any tests you haven't had yet?
05-03-2012, 12:30 PM   #3
archie
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Join Date: Oct 2010
I was lucky enough to have a professor diagnose me before any scans etc as he had the experience to call a spade a spade he then sent me for an array of tests to confirm it. My GI was the opposite end of the spectrum and even after the prof's diagnosis and a hospital admission with an abscess and perforation he still wouldn't confirm the diagnosis until after a colonoscopy with positive biopsies. It's crazy that there is such a variation with Doctors and their level of experience and some of them just sit on the fence and need a gentle shove in the right direction... try and get a 2nd opinion to confirm your diagnosis and hopefully get on some meds to help. Good luck
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Archie

Diagnosed Crohn's 2010
ileocecal resection 2010
Meds: Nil and in remission

05-03-2012, 12:32 PM   #4
Stephy Chelle
 
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Yes I've had a colonoscopy. A couple actually. I had endoscope as well. Biopsies were performed. Moderate inflammation in parts of my colon. Not throughout, just in patches. I have healthy colon as well. Moderate inflammation in my TI but the rest of my small intestine is fine. My GI doc says it looks to be Crohns but can't diagnose it because the cell or whatever it is that "shows up" Crohns wasn't apparent. He did say we may go ahead and treat it as Crohns and see how I do. I go see him Tuesday. So we will see what we need to do next
05-03-2012, 03:48 PM   #5
Cat-a-Tonic
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With the patchy inflammation like you described, it could be either Crohn's or Microscopic colitis. Both have a "skip pattern" meaning they are patchy. Has your doc ever mentioned Microscopic colitis to you? The other thing I meant to mention is mastocytic enterocolitis (what's what they'd be looking for when they stain for mast cells, but most doctors don't stain biopsies for mast cells so it is often missed). ME and MC are both also types of IBD but aren't as well known as Crohn's and UC so doctors don't always think to look for them. So you might want to ask your doctor about those.

Good luck on Tuesday! I hope you can get on some good treatment and get some relief for awhile.
05-05-2012, 07:17 PM   #6
Mayflower537
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Maybe it was the absence of granulomas that makes him hesitate? I have heard of some on here with inflammation, but the doc will not diagnose without seeing granulomas on pathology. What an awesome disease!!!
05-05-2012, 07:41 PM   #7
Gculk
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It astounds me that these medical 'professionals' will on one hand deny you a diagnosis while acknowledging clear signs, and on the other hand refuse to treat you because of that lack of diagnosis, even though the treatments overlap so heavily between the diseases.

If you went to the garage and the mechanic said "Yes, your brakes are not functioning, but we won't take a look at it until we know whether it's the lines or the brake fluids" you'd call him a sociopath!

As other posters covered, Crohn's is generally differentiated from UC and other IBD using the granulomas, and ME is differentiated using the mast cells, but knowing that there is inflammation there is a great leap forward (and not the Chinese kind where everyone starves to death) in getting to a final diagnosis.
05-09-2012, 09:06 PM   #8
dannysmom
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Hi ... my son has patchy mild inflammation in several parts and he is also undiagnosed. Will your doctor let you try some IBD medication?
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Jeanne
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
05-11-2012, 05:18 PM   #9
Stephy Chelle
 
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I saw my doctor. I had more blood work done. It's like my 10th time in 5 months and it's getting old! Doc says, "You are having symptoms of Crohns disease but I'm not seeing proof that you have it YET. I see colitis but can't tell what type it is." Hopefully this last stick in my arm gives us clearer answers. So until then, I take my meds, take care of my body and wait....as usual.
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