Crohn's Disease Forum » Support Forum » Undiagnosed Club » My battle with undiagnosed Crohn's


05-02-2016, 01:52 PM   #1
Newmaine
 
Join Date: May 2016
Location: Mahwah, New Jersey
My battle with undiagnosed Crohn's

Hello all,

Firstly this specific group is fantastic. I have been in limbo for nearly two years now. But I've come to realize that my symptoms probably go back farther than that.

It's been a wild ride. My symptoms started lightly but have increased over the past two years dramatically. I have lost nearly 40 lbs since last May (completely uncharacteristic of my body type), daily nausea, stomach pains and cramps, fatigue, anxiety, depression, bowel movement changes, sleep pattern changes, loss of appetite (skipping 3-5 meals a week now). Basically the whole gambit of stomach and Crohn's related issues- I've got them

I've had colonoscopy, endoscopy, gi series small bowel follow through, and all have been clear besides some light inflammation. We've also ruled out endocrinology, rheumotalogy, Lyme, and all varieties of blood work and testing that can be done. Needless to say, all my tests over the past two years have come back negative

My latest gastro (fifth gastro, one left his practice without telling me, doctors right) believes that it could be Crohn's in the small intestine and we are performing an MRI enterography this week. With a follow up capsule endoscopy next week if needed.

This may sound ridiculous and I hope I do not offend some people, but I hope it's Crohn's. I can't take the uncertainty and lack of treatment any more and I just hope that we have found an answer and can begin the correct treatment. As the vicious cycle of anxiety and flare ups has only increased with every successive doctor appointment.

I've been told it's just anxiety, depression, stress. But I've been clinically depressed before- it's not that. I know that anxiety can cause flare ups and I certainly agree. But I've had to bite my tongue quite a few times as another doctor (who isn't a psychologist) tells me it's all in my head.

I've been gluten and dairy free for 4 months (helps but still significance symptoms), quit my stressful customer service job to pursue my passion of social work (reduces stress), quit alcohol, quit coffee, quit majority of processed foods, and exercise 4-5 times a week, began yoga, have continued meditation practice, even tried acupuncture and various homeopathic remedies (turmeric, etc). I hope that the only thing I'm missing is the correct Crohn's medication which should streamline treatment. I was using cannabis to help manage symptoms, but have had to stop pending some drug testing for internships. Just wondering if anyone has any more suggestions for things I could do?

Sorry for ranting, but as much as everyone says they understand it's hard for them to unless they've been through it. That's why I'm very happy to have found this group!

Well that's all from me. Hopefully we have a diagnosis by weeks end. Thanks all!
05-02-2016, 03:19 PM   #2
ronroush7
Forum Monitor
 
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Join Date: Oct 2013
Location: vienna, Virginia

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Hi. I am sorry for all you are going through. I hope they come up with a diagnosis with this latest set of tests. I think you have done pretty good for the adjustments you have made. Hopefully, once they diagnose you they can get you on the right meds. Let us know how it turns out.
05-02-2016, 03:57 PM   #3
Newmaine
 
Join Date: May 2016
Location: Mahwah, New Jersey
Thank you I will certainly post my results as I would like to compare my results and successive treatment to that of others. I have been on this site one day and found the information and support invaluable
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