can it still be crohn's. Expert please

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JudithUK
Regular Member


Date Joined May 2008
Total Posts : 24
   Posted 6/2/2008 11:15 PM (GMT -7)   
My doc said yesterday that there was no damage to the colon and rectum. This made them think that its not crohns.
But I thought that damage was done by constant D. I have constipation instead with short bouts of D.
They want to scope through the mouth because my pain is high in the stomach, round waist and where the stomach and deodenum would be, as well as low right side.
Can there be crohns in these areas and no damage lower down the tract. I cant eat anything other than soft small stuff or I get ill. My temp. is grumbling away at 99.5.
What do you think.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/3/2008 6:42 AM (GMT -7)   
Can't tell you if you have Crohns or not, but Crohns can be anywhere from the mouth to the anus. So to answer your question, yes Crohns could be higher up.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 6/3/2008 8:06 AM (GMT -7)   
AS Nanners said crohns can hit anywhere. Sometimes we get referred pain, which in short means, we may get pain in
an area where the problem isn't. Your lower right pain does sound suspicious, especially accompanied with a fever.
Keep us posted...
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 6/3/2008 11:05 AM (GMT -7)   
Hi Judith:

You must be feeling very frustrated by the process of diagnosing this disease.

Your pain is consistent with where i complained of pain early on in my disease and my crohn's lesions are isolated in the terminal ileum. You need a full endoscopic and small bowel work up. It has also been my experience early in the course of my disease to experience alternating cycles of constipation and diarrhea. The fever is a signal that there is an inflammatory process at work. Hope you can find the patience to endure the rest of the tests that need to be completed and in the meantime, know that you aren't crazy. Your pain is real.
Belleenstein:

30+ years living with Crohn's.


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 6/3/2008 11:31 AM (GMT -7)   
My GI has a patient who is a college student. He's been diagnosed with Crohn's but has NO intestinal issues - not even D! He's been diagnosed based off his bloodwork and the "extra" intestinal symptoms he's experienced, like swollen feet.
Diagnosed in October, 2004 at age 33.
36/F/SC
Current Rx's: Colazal (generic), Nexium (generic), Ferrous Sulfate, One-A-Day multivitamin, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date


Shoshanna
Regular Member


Date Joined Feb 2008
Total Posts : 91
   Posted 6/3/2008 5:27 PM (GMT -7)   
Yes it can....Crohn's can be found any where from the mouth to the anus.
CD diagnosed 34 years ago
Stem Cell Transplant may be back on
Lap-assisted Ileocolic Resection- February 2008
Ankylosing Spondylitis
Uveitis
Back on Prednisone - I hate it
Methotrexate
Ranitidine HCL 
Prednisone 1% (eye drops)
Maxidex  (eye ointment)
Homatropine 5% (eye drops)
B12, Folic Acid, Vitaman D, Calcium


songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 6/3/2008 5:29 PM (GMT -7)   
I think you need a small bowel followthru, sometimes the scope cant see certain areas---your pain sounds similar to when they found the crohn's in my ileum

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Diagnosed with severe Crohn's colitis in May 2005--spread to ileum and small intestine as of April 2008. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Currently on Remicade every 8wks, 40mg Pred, Pentasa.


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 6/3/2008 7:18 PM (GMT -7)   
or a capsule endoscopy- it fits where the other scopes cannot. that is how i was dx

medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 6/3/2008 8:08 PM (GMT -7)   
examination of a biopsy (actual sample of bowel wall taken and viewed under microscope) obtained by using endoscope equipped with a small device that takes the sample from whatever area is affected ..is helpful to see the extent of inflammation or abnormalities. Such as how deep into the mucosa is affected. the deeper into the intestine wall the abnormalities exist, suggests crohns rather than colitis, if i remember correctly.

damage from D? no. D is from crohns or am i missing something?

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 6/3/2008 8:14 PM (GMT -7)   
if you have pain in the lower right area, that sounds like the terminal ileum or small intestines. Didn't he go to that area in the scope?

JudithUK
Regular Member


Date Joined May 2008
Total Posts : 24
   Posted 6/3/2008 9:54 PM (GMT -7)   
They only had a look in the rectum and colon, couldnt get any further, I reacted badly to prep stuff I had to drink, so an enema was used, but only cleared so far up the colon. Their arguement is that because the colon looked clear and histology clear, its unlikely to be crohns. But thats not where my pain is. So now they will look from the other end.
Thank you for all your help. This feels like a very long and frustrating road, your help and company is very much appreciated.

Chedva
New Member


Date Joined May 2008
Total Posts : 4
   Posted 6/4/2008 10:41 AM (GMT -7)   
My DS has no evidence of Crohn's in his small or large intestines according to his colonoscopy, upper GI with small bowel follow through and the gastroendoscopy. It is all in his stomach. It is possible that it is in that section between the small and large, but he can't have the capsule, it wouldn't be able to get out of his stomach because it is swollen shut.

He has never had issues with D. He has had bouts of constipation for years. His main symptoms that led us to the gastro, high to mid ab pain, lots of nausea, vomitting every 4th day because of the stomach being swollen shut.

I hope you will be able to get all the answers you need ~ Chedva
I smart enough to know that I don't know everything.

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