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I was diagnosed 3 years ago with a colonoscopy that showed ulcers and leisons. This July had another colonoscopy and there were no signs of any damage. A capsule endoscopy showed leisons in the very top of the small intestine. A genetic blood test for Crohns was negative. Now my GI says he can't say I do have Crohns and can't say I don't have Crohns. I feel awful. I have so many food intolerances and allergies. Joint pain, fatigue, Thyroid Eye diesase, Raynauds, daily stomach pains make me feel like I am losing it. I am sick of being tired and tired of being sick. I have been sick for 15 years and feel like this is just how life will be for me. I am so frustrated.
 

Crohn's 35

Inactive Account
Wow that is a long time!! Welcome to the forum! Did your doctor give you any kind of treatment? Crohns can take years to find, and you have alot of the symptoms. So sorry you are suffering, we all know what that is like, being there is no cure, we all have to deal with symptoms sooner or later or find a drug that helps us. Dont give up on trying, he has to find something A colonoscopy with a biopsy is a good way to catch it. Good luck , keep us posted!
 

ameslouise

Moderator
Hi SLW and welcome!

You will find from reading around that there are so many here that are yet undiagnosed. It's frustrating!

Are you on any meds now? Have you had your blood checked for deficiencies? Any activity in the small intestine can affect absorbtion so you need to keep an eye on vitamin D, iron, magnesium and all the B vitamins. If you are deficients in these, or anemic, it can really impact your energy level.

Have you thought about seeking a second opinion from a doctor that is willing to search further?

Good luck - Amy
 

mikeyarmo

Co-Founder
Hi Slw,

Welcome to the forum.

I am sorry to hear your frustrations in life.

I know that for a couple years after having symptoms that I had many of the same concerns that you had (including the fact that my doctor did not know what was wrong with me). After trying a few different treatment options I had surgery and that brought me pretty back much to normal life.

Therefore, don't let your current circumstance keep you down as I know that things can change fast.

We are here for you for anything you need!
 
Doctors can be really unfair sometimes, but don't worry, it will get better! :) and youve come to the right place for advice and help :)
 
Hi slw,
15 years is a long time to be dealing with this and still not have any answers. Have you tried going to the "top" specialists in NYC? When my Crohn's got more complicated, my local GI had me go to Thomas Jefferson in Philly, and then later on to docs from Mt Sinai in NYC.
 
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