Posted 7/31/2014 3:33 AM (GMT 0)
So I've got more doctor confusion..
A little background first: I have not been officially diagnosed. After a lifetime of "stomach problems" (frequent diarrhea but thought to be normal) and joint pains, I became very sick beginning in January of last year. Things progressed from just some random pain to constant dull pain to consistent diarrhea and Worse constant pain combined with periods of spiking horrible pain. I had a colonoscopy, endoscopy, blood work, ultrasound, hida scan, and they all came back negative. But I had all of those tests in the very beginning before I got really sick. Back when it was just the dull pain. I had a ct scan a few years back when I spent a week or two very sick and ended up in the hospital. It picked up inflammation in my ileum, but I didn’t follow up with a GI to look further into it. In October, I saw a new GI who did another ct scan revealing superior mesenteric artery syndrome (basically, I lost the fatty mass between the intestines and the heart valves causing a blockage.) The doctor put me on prednisone rather than continuing tests. He used it as a guess and treat method. If the pred worked, we kind of had our diagnosis. The pred did work. It was hard to get off of without getting sick again, but it worked and I’ve been in remission since January of this year. (aside from skin rashes and joint pains that popped up when I was sick.)
Now! I switched to a new doctor. She wasn’t satisfied with my non-diagnosis and has begun the testing all over again. I’ve had an mra and an mre so far. Which both came back negative. She wants me to get a colonoscopy and a capsule endoscopy next, but I’m not understanding what she’s supposed to find since I’m in remission, and she’s not answering my questions very well.
Would she be able to find someone if I were in remission with only having mild flares in the past?
Also – my last doctor had told me of cases of crohns where no inflammation could be found, however they were still diagnosed with crohns, the same way that some people go their whole lives feeling fine, yet are covered in inflammation on the inside. Is this true? Could you have crohns with no visual evidence of inflammation?
Last question – For the last couple of weeks, I’ve started to have that same kind of dull pain a few inches up from my belly button. It is sort of a hungry feeling but with pain. It started out just having that ripping pain for 20-40 seconds right before my stomach would growl and once it growled, the pain would go away for a couple of minutes until it needed to growl again. It would go away when I ate until today when it’s just persisted through my meals and has been constant all day. Does this sound like something any of you have experienced with crohns?