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Crohns Diagnosis-CT scan shows crohns but blood work does not??

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Crohn's Disease
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Posted 7/28/2015 12:29 AM (GMT 0)
Good afternoon,

Hoping to get some help from folks with similar experiences to mine.
I have been having some stomach issues that made me reach out to a GI. He ordered an abdominal ct scan and below are the results:
*There is an approximately 15cm long segment of distal ileum that appears collapsed with mild wall thickening. The terminal ileum is distended and borderline dialated measuring up to 2.3 cm in greatest diameter. The findings are suspicous but not definitely diagnostic of early or intermediate Crohn's disease. A detailed small bowel study should be considered.

So the doctor then ordered a sed rate, crp and prometheus blood test that all came back normal.

Has anyone else had a similar experience but still had crohns? I'm scheduled for a colonoscopy in 2 weeks. Although I don't want Crohns I know something is going on with me but per the blood test doesn't look like Crohns? Anyone with any insight in this?
Posted 7/28/2015 12:50 AM (GMT 0)
Before I was Dx, I had terrible rectal abscess and fistula. I had several operations on it but still debilitating pain! I had many abdominal and rectal CTs, small bowel follow through, blood tests, etc... Nothing showed up! Then during a 2 week hospitalization after being in complete agony for a many many months, they finally did a colonoscopy. Showed Crohns all over the place! They put me on IV prednisone and within hours that pain was gone! I hope you get some answers and relief soon!
Posted 7/28/2015 1:03 AM (GMT 0)
Wow... I'm sorry to hear that. Thanks for sharing your story though..

Just when I received the call from the doctors office about it showing signs of crohns... I was like I finally have an answer. Then the blood tests came back negative.. Sort of stinks.. Was hoping for some treatment soon..
Posted 7/28/2015 1:08 AM (GMT 0)
Blood tests are less reliable - sometimes FAR less reliable - than imaging tests and scopes.

Those CT results certainly mean Crohn's is the primary suspect. Infectious etiologies, drug reactions, and other things can't be totally ruled out yet, however.

When you have your colonoscopy, hopefully the doctor will be able to get the scope into the terminal ileum (they usually can, but not always). Assuming they can access it, they will be able to see it and take biopsies. That will most likely give you a definitive answer.

Try not to take any NSAIDs for the next couple of weeks leading up to the colonoscopy.

One thing I can tell you: If it is Crohn's, you should do your best to stop smoking. Smoking is proven to make Crohn's worse. Talk to your doctor about that.
Posted 7/28/2015 1:24 AM (GMT 0)
Beave.. Thank you for the reply. Either way I know I need to quit smoking :). I don't take any sort of medication so I don't think that would be it..

I know the doctor did the right thing by ordering the permethous test but from what I have researched it's not too reliable (not saying it can't be).

Just got me down because I thought we had an answer. I appreciate your replies.
Posted 7/28/2015 1:29 AM (GMT 0)
By the way... Does anyone know what would cause a bowel to collapse??
Posted 7/28/2015 1:39 AM (GMT 0)
I'm not 100% sure on this, but the way I understand it, when the bowel is empty it's pretty normal for it to be "collapsed" on itself. When it's full of food, it fills up and is obviously no longer collapsed. Think of a hose that is really flexible - it contracts when empty and expands when full.

One of the reasons for drinking all the contrast is to fill the bowel up and distend it. That allows the CT scan to view the bowel walls better. If the bowel were empty and thus all collapsed on itself, it's harder to visualize the bowel walls on the scan.

So your segment that was collapsed means it wasn't filled with contrast medium in that section. That sometimes happens when not enough contrast is ingested; or if there is a narrowing/stricture of the bowel that prevents the contrast from getting through and spreading evenly throughout the bowel; or if that segment is dysfunctional in muscle contractions to push the contrast through.
Posted 7/28/2015 1:42 AM (GMT 0)
Got it. Well thank you very much for your replies. I will keep you updated on colonoscopy results.
Posted 7/28/2015 8:51 AM (GMT 0)
Don't worry about the normal blood results. That's actually quite common, which is why you cannot use blood test results to diagnose (or exclude) Crohn's disease. Some would disagree with me, but I don't think the Prometheus test is worth the paper it's printed on.
Posted 8/13/2015 11:00 PM (GMT 0)
Just an update... Colonoscopy was done today. There is definitely inflammation according to the doctor. The terminal ileum is really red and has "patches" throughout. He said he took biopsies.

The patches look yellowish in color.. Any idea what that is??
Posted 8/14/2015 3:28 AM (GMT 0)
Patchy inflammation is indicative of crohn's, what did the GI say about your c-scope to you? Did s/he mention CD?
Posted 8/15/2015 2:22 AM (GMT 0)
Hi,

I'm new to this forum but I just had my third small bowel resection in March and now five months have gone by and still have pain in my right side know matter what I eat or drink. When I go to the bathroom It feels better. I also have a pulling on my left side that takes my breath away. I think it is scar tissue which can come as soon as the surgery is over, that is what I was told by my surgeon and what I also read. Does anyone have these symptoms? I also had blood work done and the results came back very good. Had a ct scan with oral contrast but don't know the results yet. Have to go to my GI August 19 and will see what the results are. I have had Crohn's for 52 years. It still get me down especially after another surgery.
Thank you for listening and God bless.

Volleyballnan
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