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11-28-2012, 10:45 AM   #1
scf77
 
Join Date: Nov 2012
Location: Minnesota
Undiagnosed-Thoughts on whether this is Crohn's?

Posted this in the main forum before I realized this one existed.

Hello all,

This is my first time posting here. I'm hoping some of you can help/reassure me about the symptoms I've been having for a few years. Here's my story:

I've had GI issues my whole life. As a child, I suffered from terrible constipation and stomach aches. My parents tried many different treatments on me with only limited success. My problems waxed and waned over the years only to come back full force after I had my second son three years ago. I finally went to my doctor two years ago because the pain had become unbearable. She referred me to a GI doc who performed a battery of tests.

April 2011: Sigmoidoscopy up the descending colon and biopsy, clear
December 2011: CT scan of the abdomen and pelvis, clear except for an ovarian cyst
March 2012: Pelvic MRI, clear except for cyst
March 2012: Ovarian cyst removed, insides look good

Over the past two months my symptoms have worsened and I now have bloody mucus in my stool along with lower left abdominal and back pain. I primarily have constipation but occasionally diarrhea as well. I'm going back to the GI doc next week.

So, does this sound like Crohn's? It is one of the options floated by my doctor. I'm trying not to let my mind go to worse things and my clear sigmoidoscopy has provided some reassurance.

Thanks for your input.
11-28-2012, 01:21 PM   #2
Cat-a-Tonic
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Location: Madison, Wisconsin

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Hi scf77, welcome to the forum and the club. Unfortunately what you've described could be any number of things, so you should pursue more testing. A colonoscopy and/or upper endoscopy would be a good start, that's where most of us start with testing. The sigmoidoscopy doesn't see much at all, the other scopes will see more. An illness like Crohn's can manifest anywhere in the digestive tract (literally anywhere from mouth to anus), so it's a good idea to get as full of a picture as you can of what's going on inside. And if it is something like Celiac, it should appear on the upper endoscopy.

Have you had blood work or stool samples? That would be another good idea. They can check your inflammation markers and vitamin levels (certain things, like vit B12, is often low in Crohn's patients) with blood work, and they can check for or rule out things like parasites, bacteria, etc with the stool tests and can also check for inflammation levels there too.

I hope that helps a bit. Welcome again and I hope you can get some answers soon!
11-28-2012, 01:51 PM   #3
scf77
 
Join Date: Nov 2012
Location: Minnesota
Thank you for your replies! I have had an EGD -forgot about that one - and it was normal. My B12 was tested recently and was just on the low end of normal. Haven't had my stool checked or any of inflammation blood tests. I expect that when I go in next week they'll want to do a colonoscopy and some of those blood tests. I think I will push to get those tests done at the very least.

I'm just so frustrated and want answers. I imagine that is a common sentiment for anyone trying to get diagnosed but I'm really feeling it all of a sudden even though I have been dealing with this for going on two years now (at least for this "flare").

Thanks again for your thoughts.
11-28-2012, 03:52 PM   #4
Cat-a-Tonic
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If you get your bloodwork done, ask for them to test your CRP (C reactive protein) and ESR (elevated sed rate) - those are the inflammatory markers. Keep in mind that about 10% of Crohn's patients will have totally normal CRP and ESR all the time, even when in a bad flare, so these blood tests are not 100% accurate and may come back in the normal range. Don't let it discourage you if that is the case, it doesn't mean you're not really ill.

And I can so relate to what you said about being frustrated and just wanting answers! I think everyone in the undiagnosed club can completely relate to that. I am undiagnosed myself so I certainly get it. I've been ill for just over 3 years now and am still technically undiagnosed (I'm unofficially diagnosed with IBD but that's far from definite and they don't know which type of IBD). I am fortunate to be in remission right now, but I still would like a name for the sleeping monster so I can fight it better when it wakes up again. I wish I could help you more. All I can do is to encourage you to keep pursuing more tests, and don't give up the fight for answers!
11-29-2012, 05:43 PM   #5
dannysmom
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I agree with Cat, you should have a full colonoscopy so they can biopsy more areas.
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Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

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