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Ileum Inflammation - UC or Crohns?

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Posted 4/25/2017 6:28 PM (GMT 0)
Hi everyone - new here!

In 2006 I was diagnosed with ulcerative colitis. I have been in remission since June 2007 - have had no flares, no bleeding, eating normal diet, exercising, etc.

I had a colonoscopy 2 weeks ago and the pathology report came back last week. The biopsy of the terminal Ileum showed mild to acute inflammation. No other inflammation anywhere else.

I compared this report with the colonoscopy done in 2015 and no inflammation was found in the Ileum.

What does this mean? In the little poking around I've done on the Internet inflammation in this area is condusive to Crohn's disease. Is it possible I've been misdiagnosed? Will the inflammation in this area need to be treated - or is it left alone?

I don't see my gastro doc until 5/23 so any insight would be greatly appreciated!

Karen

Ulcerative Colitis - dx 2006 - remission 2007.

Meds:
6MP - 75mg per day - 1 1/2 tablets per day
Lialda 1.2 GM - 2 tablets - 1x/per day
Citrucel - 2 tablets - 1x/per day
Miralax - 2x/per day
Posted 4/25/2017 11:34 PM (GMT 0)
There are many that have their respective diagnosis changed over time. I would suspect Crohn's with inflammation in the ilium, as Colitis only affects the colon.

Since you've been symptom free for so long, and only on 6MP, then you've done extremely well. I think you'll need further diagnostics before assuming that you have Crohn's. Do you have any other typical symptoms?

The least invasive would be an MRE. You'll definitely need to consult with your GI as well. You should have a full blood screening.
Posted 4/26/2017 3:02 PM (GMT 0)
73monte -

Thank you so much for taking the time to respond. The information you shared has been helpful.

I believe I do have other typical symptoms - I have mouth sores frequently - mostly on the inside of my cheeks and on the bottom and sides of my tongue. At times it has been so painful it's been a challenge to eat / drink.

I also have arthritic type pain in the joints of my fingers and hands (sometimes in my back) and last year I was diagnosed with depression.

Lucky me - I also have relapsing remitting multiple sclerosis which has worsened slightly over the past year but seems to have stablizied with med changes.

In early 2007 I went to the Cleveland clinic to get treatment for the UC because I wasn't receiving what I needed locally. The docs at Cleveland clinic told me that they thought I had Crohn's and not UC. Unfortunately when I returned home my current doc dismissed the Crohn's dx and said UC and that is be how I've been treated since.

Thanks again for the information!
Posted 4/26/2017 4:55 PM (GMT 0)
I'm newly diagnosed so no veteran by any means. You could have backwash ileitis from UC - however, I think that is only if you have ulcerative pancolitis. I'd be highly suspect of Crohn's and push your doctor for some explanation/follow-up.

Just to add my perspective, I was initially diagnosed with suspected Crohn's Ileocolitis based on a capsule endoscopy (pill cam) that showed apthous ulcers in my jejunum and inflammation in my ileocecal valve. They put me on prednisone for 3 weeks and then did a colonoscopy. By then, my TI was healed and TI biopsy showed nothing so they changed my diagnosis to ulcerative colitis. Obviously, I have a lot of questions because Crohn's doesn't cease to exist as a diagnosis just because it responds to steroids.

My point is, doctors do weird things, and you should feel totally validated in wanting further explanation/follow-up.
Posted 4/27/2017 1:00 AM (GMT 0)
Karen,

I'm not sure your other symptoms would qualify as "typical". Do you have any sort of lump or protrusion on your lower right side? Severe pain on that side? Extreme fatigue? Weight loss? Diarreah or constipation?

If you can get your Doctor to do a full blood screening, ask to have test for C-reactive protein, sedimentation rate, WBC, RBC, iron, iron stores, and vitamin D.

Im sorry to hear of your other health issues. MS would be enough to deal with without having IBD to diagnose as well. Hope things improve soon, please keep us posted.
Posted 4/27/2017 1:55 AM (GMT 0)
73Monte -

No - no other symptoms. No protrusion, no pain on lower right side, no weight loss, no constipation or diarrhea. I do have problems with fatigue - have had for many years but the docs have always pointed to the MS as the cause.

I physically feel fine (GI) wise - just this inflammation popping up in my ileum has me concerned.

Thanks for the information on what specific blood tests I should get done. I'm sure I've had all that tested previously but it has been awhile. Thank you again for your responses and insight.

Noodlesnoodles - thanks to you as well for your response and support.

I'll keep you posted - it may be a few weeks - I don't see my doctor until May 23rd!
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