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Cant get answers or a firm DX

About 5 years ago I was Dx'd with Crohn's. Blood work came back positive and one biopsy from the colon came back possitive.  I had an ulcer near my iliem in the small bowel.  Since then I have had 10 colonoscopies w/ biopsies and 6 upper GI series most come back normal no disease. I have been on Pred off and on for the 5 years, I have taken Imuran and Remicade for 3 years. And I every time I have to change GI's I get the samething you don't have Crohn's, you do have it here are your drugs to now you don't have it.(Small rural town with big doctor turn overs)  I have been off all Crohn's Medication including Remicade since March of 08. I had a Colonoscopy in Sept. and it showed no signs of imflation no signs of scaring. The upper GI showed throat damage from acid reflux and stomach ulcers.

My Sed Rate and C reactive protien, all come back elevated. My cbc is slightly high, I have weird scaley rash, and now I have sores in my nose and sides of my mouth that won't go away.  I have constant Diarreah, I go to the bathroom 20 times a day on average.  Questeran powder or pills don't help. Sometimes I have blood in the mucusy stools. Stool sample test performed are Fecal Fat which came back slightly high (I don't have a gallbladder) and the other samples came back negative for worms or infections, possitive for blood in the stools.

I had two ANA tests done one came back possitive and the more sensitive one done for lupus came back negative.  MY joints hurt, and now I got what I call really big zits on my butt cheeks stomach and  chest area hubby says they are boils I don't care what they are they hurt like hell!   I am tired all the time no energy and stuck in limbo grrrrrrr I hate this

I need answers
3 Responses
469934 tn?1333135282
Hi taximom1999:

I am so sorry to hear that you are suffering.  I wish I had something to offer you but I don't.  Could something non-Crohn's be going on?  You mentioned that you were without gallbladder.  Could it be Post-Cholecystectomy, pancreatic or duct-related?  There is a fantastic research resource that I've found very helpful called "The First Principles of Gastroenterology": http://gastroresource.com/GITextbook/en/Default.htm.   Give it a look if you have the time.

I can't imagine how difficult it must be just to put one foot in front of the other each day with all of the symptoms you have.  Maybe it's time to get to a larger hospital and get the answers you so desperately seek.

Good luck and Godspeed!  All the best,

Sam
Avatar universal
Thanks Banned1 I read most of what that site had to offer and it still doesn't give me any clear answers.  

MOANING & GROANING PITTY PARTY PART BELOW

I am begining to think I will never really know what is wrong with me. I could go to a bigger city hospital but that would be a three hour trip both ways and right now that is out of the question.  I do live in hicksville USA !  Since I have been off all my meds but a migraine/blood presure control medication I seem to be getting more and more symptoms and less answers as to what the heck is going on.  On Jan 1 2009 (tomorrow) my insurance deductable doubles and I am a little depressed that nobody has found anything concrete by now and I am not sure I can afford more test in the new year.

Not that I am looking forward to be a lab rat yet again.  I have cameras stuck up my nose, down my throat, up my rear, into my bladder (I shudder to think of where else they could possibly think to stick a camera that hasn't been done on me!).  I have had to drink thick barium, contrast medication, and the wonderful bowel prep from Fleet phososoda, golytly, the pills,.  I have had my blood drawn so many times I have scar tissue in the crooks of my arms. I have done so many stool sample test that my family said if I brought home another stool collection kit I could move out.  I have gave them urine samples, puke samples, and still no answers.( HAPPY NEW YEAR yea right, this is what  I get to look forward to for 2009 all the test again!)

All they can say is that I have imflamation somewhere.  Grrrr I hurt, I am tired, I have been to the bathroom 5 times in the last 2 hours with the dreaded "D", no reilf hardly any sleep.    GRUMBLE MOAN AND WHINE!

OK I am done now I think I will put on my happy face and pretend all over again that I love my life!

TaxiMom
469934 tn?1333135282
Hi there:

I belong to a Yahoo! group which deals with Sphincter of Oddi Dysfunction, Pancreatitis and Undiagnosed Symptoms, among other things.  Please write Michele at Sphincterofoddi_pancreatitis***@**** and ask to join.  There is no charge.  Michele is a Registered Nurse and has suffered for many years.  In spite of that, she is the owner and moderator of this webgroup.  She is a phenomenal person; kind, understanding and incredibly smart.  Since you are undiagnosed, I'm sure you would be welcome.  The members of this forum are dealing with or have dealt with similar situations and can provide good practical advice.  Please feel free to mention my name, Sam (not short for anything), in your email.  There is some great practical information there as well.

Good luck and Godspeed,

Sam
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