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Crohns/Ulcerative Colitis or indeterminate colitis??? let me know what you think!

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Crohn's Disease
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Posted 11/13/2010 3:26 AM (GMT 0)
Hi this is the 1st time posting on the crohns board since I thought I had ulcerative colitis.

I have been having problems again so I went in for a colonoscopy again yesterday. I usually only have proctitus that is characterized by friability, erythema, and granularity and sometimes ulcers. This causes bleeding and mucous and diahrrea.

However this colonoscopy they found  "segmental inflammation characterized by aphthous ulcerations in the terminal ileum. He called this "Ileitis".  I know with ulcerative colitis it doesn't go into the small intestine.

So do you think i have crohns  or colitis?? Any thoughts would be helpful!!

Thanks!

 

Posted 11/13/2010 4:14 AM (GMT 0)
I'm no doctor, but when they did the scope they should have taken biopsies. These will help point the diagnosis in the best direction. Your doctor probably took them...did you get those results back? Also, after my scope where my doctor told me in his opinion I had Crohn's (with the biopsies later coming back further indicating that), he wanted me to have some type of blood test to help determine between Ulcerative Colitis and Crohn's to further confirm the findings.
Posted 11/13/2010 5:02 AM (GMT 0)
I have had diagnose chron's disease since 2000. I started out with problem with my rectum and ulcers in the cecum. My small bowell was unaffected. in 2005 I ended up in the hospital with ulcers in my mouth, throat and large intestine. My doc biopsied but the test still did not difinatively rule that it was chrons. However, the general consenses is that chron's ulcer will be randomly placed through out the colon, whereas UC is typlically contiuous ulcer on the large intestine only. There are some other more serious differences but this is the basics in nutshell. Unfortunately the blood test does not alway affirm or disaffirm. Fortunately, it is usually the same meds for both.

"....PARTS OF THE DIGESTIVE SYSTEM AFFECTED
Chron's

Deep in the lining of the walls of the colon and/or small intestine
Any part of the digestive tract from the mouth to the anus
Rectum affected 50 percent of the time
Inflammation usually happens in patches along the digestive tract, with "skip areas" of healthy tissue in between.

UC
Rectum affected 95 percent of the time.
The inflammation begins at the rectum and moves up the colon in a continuous manner. There are no areas of normal intestine between the areas of diseased intestine.
Posted 11/13/2010 5:33 AM (GMT 0)
I did get biopsies done but they haven't come back yet. This was my 3rd colonoscopy (also have had 3 sigs) and every one of the biopsies came back consistent with ulcerative colitis. I will ask my GI about the blood test your talking about. My GI didn't say anything really because I had some complications after the procedure with my heart rate and I was there for over 4 hours. On his sheet with pictures and findings he gave me he put on there....
Ileitis
ulcerative proctitis
Indeterminate Colitis

So I was guessing he doesn't know what it is. Also he took biopsies from my right and left colon to check for microscopic colitis it says.
Posted 11/13/2010 4:26 PM (GMT 0)
Sounds like you have Crohns Colitis. You have Crohns in your small and large intestine. Hugs!
Posted 11/13/2010 4:44 PM (GMT 0)
spirited I have cd in throat and esphogus with cankersores, the only thing that has helped was pred, which i could only take for 2 months, rem has taken that flare in mouth,throat away, I could barley swallow food, and when i got my last infusion, within 1 1/2 hr's I could swallow food, before I could only eat blended foods, now my throat feels 90% normal and I'm starting to gain weight

Posted 11/13/2010 5:45 PM (GMT 0)
this exact same thing happened to me but they found a granuloma eventually on path. you probably have Crohn's, or less likely UC with a superimposed infection affecting the terminal ileus. I doubt this is the backwash ileitis sometimes seen in UC since you don't have pancolitis
Posted 11/15/2010 8:18 PM (GMT 0)
lovemyboys, after 8 years of pain and test after test, a capsule endoscopy found ulcers in my terminal ileum, consistent with Crohn's.  The Promethius test (that Aces High refers to) said it was UC with "98% accuracy."  I had symptoms of both, so they called my indeterminable colitis.  Over the years, I noticed that my dx changed to Crohn's, but no one ever really told me why.  Now, 5 years later (and about 4 of those have been in remission), my GI is not really questioning the dx but trying to confirm it since the arthritis has gotten so bad and we are about out of treatment options.  I think we will have to stop the biologicals that treat Crohn's and try some just for the arthritis.   

 

Anyway, point is that it is hard for them to know sometimes which it is.  And they now say the Promethius test is not as accurate as it claims to be.  There have ben posts on here recently where people were misdiagnosed with one and then later found out it was the other.  But, I hope your biopsies point them in the right direction. 

Posted 11/16/2010 1:29 AM (GMT 0)
After decades of being told I have UC they changed my diagnosis to Crohns. The doctor was able to tell immediately that I had Crohns. Ask the Doctor that did the scoping. No one can tell me why the change happened or if it changed or if all the other colonoscopies were wrong. Whatever is how I feel about the past I try to deal with this DD daily. Luck
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