Crohn's Disease Forum » General IBD Discussion » Newly "Diagnosed", Help Please?! :)

03-10-2016, 03:11 PM   #1
Join Date: Mar 2016
Newly "Diagnosed", Help Please?! :)

I have struggled with GI issues for at least half of my life, I am now 28 years old. Eight months ago, my symptoms became quite severe and I was down and out with diarrhea, fatigue, skin and eye inflammation (diagnosed with iritis), joint pain, very weird body odor, loss of 15 pounds from my 120 pound frame, and severe dehydration as a result of the continual diarrhea. Oh - and the blood...I was introduced to the great joys of rectal bleeding. There is family history of IBD, so I was additionally alarmed.

My blood tests and extensive fecal tests all came back normal.

My colonoscopy was positive for Crohn's Disease - inflammation was found at the terminal ileum.

My biopsies spent an exceptionally long time at the lab, then came back "within normal limits."

My GI concluded that I have "mild, early-onset" Crohn's Disease. I have been taking 6 mg of Entocort daily since the "diagnosis" one month ago. (Dosage reduced from 9 mg since my weight has dropped so significantly.)

I had a follow up yesterday with my GI and he informed me that we can never be sure of my "official diagnosis" until/unless a biopsy comes back showing granuloma. He suggested though that I do the Prometheus IBD sgi Diagnostic with Crohn's Prognostic, so that we could possibly get closer to that 100% certainty.

So, I am wondering:

Is this true? Do you have to have a positive biopsy to be a "100% officially certified Crohnie"?

Has anyone had experience with the Prometheus Diagnostic, and would you recommend it?

Do I need a "100% official Crohn's diagnosis" for any real reason?

Do other GI doctors only consider the GI tract and disregard all other symptoms as part of diagnosis? Mine seems to...

I'm quite bewildered here. If you have some insight to chime in with, please do.

Thank you.
03-10-2016, 08:16 PM   #2
esther_m's Avatar
Join Date: Oct 2015
Location: Melbourne, Victoria, Australia

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Gee, that doesn't sound like 'mild' anything! I lost 10kg after 8 weeks of diarrhoea, was hospitalised, took a while to settle down on meds, and my GI said I was on the moderate-to-severe end of the CD spectrum. I'm guessing you're UK or US since you're talking in pounds? Sorry I can't help you with the diagnosis stuff, but *empathy*...
03-10-2016, 09:25 PM   #3
Senior Member
Join Date: Jun 2010
Location: Saskatchewan

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Inflammation can happen anywhere on the body with crohns. So your joint pain and skin inflammation is definitly a sign of crohns. I'm not sure about the eye thing though. With a confirmed colonoscopy, you have crohns. I'm not sure why your doctor would say you need a confirmed biopsy. There are people who test "clean" on every single test there is, and yet still have active inflammation in the intestine. Those people are also diagnosed with crohns even though all tests were "normal".

A diagnosis means they can treat you. So if you're diagnosed with crohns, you are treated with medications related to crohns. If you're diagnosed with something else, they treat that instead.

If you had/have severe dehydration due to severe diarrhea plus joint pain, skin issues and weight loss, you are well past "mild early crohns". I would suggest finding a new GI.
03-10-2016, 09:30 PM   #4
Forum Monitor
Clash's Avatar
So sorry for all you are going through.

A lot of times if pathologists don't see a granuloma they won't tick the box for CD. Funny thing is:

Although granulomas strongly suggest Crohn's disease as the diagnosis, they are seen in only 10% of patients with Crohn's disease and are sporadically distributed in biopsy specimens.

Source there are definitely members who didn't have granulomas show up in biopsies but due to all the other evidence crohns disease is dxed. There are also patients who don't get the dx because the pathologist didn't see granulomas.

The prometheus test isnt 100% but it is definitely a tool that is used to help the dx along.

Most important thing is to be comfortable and confident in your doc and open communication. A second opinion is always an option as is a records review. A records review is where you send your medical records to a large IBD center and the review and give their opinion. It doesn't require you to be there in person. This might get you the definitive dx.

A definite dx can help if you switch docs in the future or as you are going through new treatment regimens as far as insurance but it wouldn't necessarily affect your treatment if this doc feels you have CD.
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara

Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
03-11-2016, 12:42 AM   #5
Join Date: Mar 2016
Thank you to everyone who responded, your words brought me such peace of mind!

I will look for a new GI, everything that has been said here makes so much more sense than what my doctor was saying at the last appointment.

Thank you all so much for taking the time to help me! It means a lot. I'm still so new to all of this and it can be very overwhelming and upsetting at times.
03-11-2016, 10:19 AM   #6
caretothepeople's Avatar
Join Date: Jun 2015
Hey TeenyYogini -

The CCFA has a tool on their website for finding a Crohn's specialist that may be useful to check out:

Make sure they are truly an expert in dealing with Crohn's be asking about their background, if they see other patients like you, hospital affiliations, etc.

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