06-02-2015, 06:46 AM   #1
Join Date: May 2015
Undiagnosed again

Hi all, I need to know if someone faced my same situation.

My journey started with a fistula with cramps and diarrhea, then went through a colonoscopy and biopsy which came back with unidentified colitis.

After that I did MRI which came back with this result:

There are no abnormal wall thickening.
There is persistent wall enhancement of terminal ileum.
Hypertrophy of mesenteric fat is seen without hyperemia.
Few enlarged mesenteric lymph nodes are seen.

MRI features, in correlation with clinical data, might be suggestive of terminal ileum Crohn's disease - for clinicoradiological correlation.
I got a ceton in the fistula and after 48 hours was back to hospital with very high fever severe diarrhea and dehydration.
They did another colonoscopy which came back clear and telling me I don't have crohn!!!!!!!
They asked me to stop my medications, I was on pentasa, flagyl and probiotics.
So I'm back to point zero, do I have crohn or not????!!!!!
06-02-2015, 06:49 AM   #2
nogutsnoglory's Avatar
Join Date: Sep 2009
Location: New York

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Maybe you should get another opinion. Certainly you can take the probiotics anyway because even healthy people take them.
06-02-2015, 07:50 AM   #3
Join Date: May 2015
My problem is that one doctor diagnosed me with crohn and another is assuring me that I don't have crohn. My crp and esr tests are high and the calprotectin is 180
06-04-2015, 09:46 PM   #4
Senior Member
tots's Avatar
Join Date: Feb 2012
Location: Austin, Texas

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I was diagnosed at 28 I am now 51 (yikes), I always had Drs disagree about my Dx until
4 weeks ago. I had a CT scan and it showed exactly what my upper GI showed back when I was 28. My current Dr felt a little bad. Good news is more aggressive treatment.

In my opinion it's hard to Dx, it's still largely misunderstood by Drs on how best to treat
The WHOLE patient. Some of the people in your life can't see it, so how real is it? In general in sucks!


Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!

Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!

06-17-2015, 04:10 PM   #5
Tamera's Avatar
Join Date: May 2014
Location: Georgia,US

My Support Groups:
Okay had one Dr in the same practice say Crohn's the other is saying your colon is clear and it's neurological so we referring you to a rheumatologist while I have been in the hospital since Monday! The pain in my stomach is intense the vomiting and didn't
Diarrhea but since my colon is clear o Crohn's but I have been taking g the medicine since November 2014 a d MAY it RETURNED!

I have lost hope in this medical group! I am so frustrated! Now you want to give me medicine to treat depression and neurological symptoms! This is BS and will leaving here tomorrow and just pray I don't end up severely ill before I get some help! NO MORE DOCTORS!

Update: out the hospital and my doc didn't have any idea his colleague wanted me to try the prozac! He stated this was a severe flare up and we should continue on our course of treatment! Thank God!

Last edited by Tamera; 06-19-2015 at 11:28 AM.
06-18-2015, 12:02 AM   #6
Join Date: May 2015
I'm sorry to hear this. It's all new for me and my mind can't understand it till now, how can a disease be that confusing!!!

The same dr who was assuring me I don't have crohn changed his mind and told me he thinks I have crohn after another biopsy's result.
So I think you should keep on trying to understand what's going on with you, may be check with another dr

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