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Colonoscopy - how can there be little inflammation & alot of symptoms

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Crohn's Disease
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Posted 3/25/2008 8:37 PM (GMT 0)
I just came back from my colonoscopy/endoscopy.  This is my 3rd colonoscopy.  The first 2 were before I started pentasa/entocort and since I was somewhat awake I saw all the inflammation and ulcers and the biopsies showed moderate to severe crohns.  Today they knocked me out totally (different doc) and he said he saw narrowing at the ti but no inflammation and a hiatal hernia.  So why the intussuception, and all the diarrhea and stomach pain.  I feel the same as when I was first diagnosed.  I know we have to wait for the biospies and I have the patency capsule in me now to see if I can do the real capsule endoscopy.  Just don't understand??  My husband brought up the fact that my diarrhea got worse when I started the pentasa, but my colon looked good so do I just deal with all the symptoms.  This is so weird!! Anyone have an explanation for this?? 

Bewildered and confused!!

Chris

Posted 3/25/2008 8:43 PM (GMT 0)
The colonoscopy only visualizes the colon. It may be that you have more serious inflammation higher up in the small bowel, which could easily account for your symptoms. My initial colonoscopy showed multiple ulcerations, inflammation and granulomas throughout the upper two-thirds of my colon. Two years later, only a couple in the colon, but continuing visible inflammation in the last couple of inches of the terminal ileum and likely further up into the small bowel. Remember that the colon is only 12-15 feet of a GI tract that runs 40 feet or more from mouth to anus, and that Crohns can be anywhere along the way.

Posted 3/25/2008 8:51 PM (GMT 0)
MikeB
yes, but they did an endoscopy too and only found a hiatal hernia but took biopsies as well. The intussusception was mid to distal ileum(not too sure where that is) but he said he couldn't visualize it with the scope so that is why we are trying to see if I can pass the patency capsule through the narrowing of the terminal ileum. When you had mentioned higher up do you mean jejunum and around there?? Do you think the capsule will tell me more info. Is there any other way to figure out inflammation where they can't reach??? This is so confusing?
Thanks
Chris
Posted 3/25/2008 8:56 PM (GMT 0)
Well the scope from the bottom can only see a few inches into the small bowel. The scope from the top can see maybe the upper foot. The other 15 feet or so are only visualized by the pill camera (or the X-ray small bowel follow through less clearly) so that is likely why they are considering the pill. Think of a 100 foot pipe that bends several times. You can shine a flashlight into one end and see maybe 25 feet to the first bend. Yuo can shine the light into the other end and see maybe 30 feet to the first bend. But the middle half (or more) is completely out of sight unless you crawl all the way through, which the pill cam does.

Posted 3/25/2008 9:15 PM (GMT 0)
Thanks for explaining all this...I was starting to think it was all in my head. The pentasa wouldn't make it to the small bowel then?? There is no way to biopsy the small bowel then. Is the small bowel a common place for crohn's disease?? How do they treat crohn's in this area ??

Thaks again!!
Chris
Posted 3/25/2008 10:02 PM (GMT 0)
Pentasa is for the small bowel. Small bowel is a very common place for crohns.
Posted 3/25/2008 11:27 PM (GMT 0)
Nikki I take Asacol the sister med to Pentasa. I use to take Pentasa but it caused me more D and more bloating.
Posted 3/26/2008 12:41 AM (GMT 0)
I have actually had active bleeding and lots of diarrhea, and a colonoscopy that looked grossly normal. Twice. My doctors were all very puzzled, but both times I was rescoped a few weeks later and there was visible inflammation. I am sure they will figure out what is causing all your problems. Take care.
Posted 3/26/2008 1:12 AM (GMT 0)
crohn's can operate on a microscopic level too, so my doc says.
I guess the disease is still there and active, but the immune system isn't causing a lot of inflammation... yet.
Posted 3/26/2008 1:20 AM (GMT 0)
LOL. You describe the test findings I get when I'm flaring! Major symptoms, but mild ulcerations in the colon & peri-anal problems are typical for me. However, I've always responded pretty well to Pentassa so I assume that some where up in the3 small bowel there is active disease..

Matthew
Posted 3/26/2008 3:51 AM (GMT 0)
Pentasa didn't do diddily squat for me, made my symptoms worse. The only way they could "see" my CD in the small bowel & TI clearly was through a MRI with contrast and verified it with the small bowel follow through. Hope you find your answers soon!
Posted 3/26/2008 1:07 PM (GMT 0)
This was all very interesting and educating ! But I have a twist ... I had my "colonoscopy" and it showed active crohns colitis w/two fistuals ; the path report says : Ascending biosy; Colitis w/miniml cryptitis
Proximal transverse colon bx : Colitis w/cryptitis, crypt abscess formation w/focal
ulceration
Transverse & decending bx : miimal increased lymphocytes,plasma cells, eosinohpils in
lamina propria
Sigmoid to rectum bx: Fibroplasia of lamina ropria w/increased lymphocytes, plasma
cells, eosinophils & few neutrophils.
I won't see my GI for f/u until next wed , with the exception of a scare for a few days after the colonoscopy ( which has subsided: -) I feel fine .. I didn't feel bad before the test and I don't feel bad now..Yes, I have some times when I am reminded that I still have the disease ...but for the most part I would never know my insides looked like they do ...
So , unlike you guys , where you have the symptoms but tests didn't show it all, I have the opposite ! I am so not wanting to go back on remicade when I don't feel bad, considering I remember how bad it made me feel...my joints hurt more !

Any explanations for my scenerio?

: )
Posted 3/26/2008 11:51 PM (GMT 0)
Only that we are all different, so generalizations are pretty much impossible.

Matthew
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