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I CANT TAKE THIS ANYMORE!!!!

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Crohn's Disease
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Posted 5/4/2010 2:25 PM (GMT 0)
This is what the GI has done.. Bloodwork-Sedementation rate almost at 50. White blood cells slightly elevated.

Colonoscopy- Clear

Upper GI and Small Bowel Series- Clear

That's it?! From those 2 tests she said that I dont have UC or Crohn's Disease... ?? I thought that there were other tests that she would have had to do but she said that everything is clear and she doesnt know where my diarrhea and bone aches are coming from. So she referred me to a Rheumatologist. REALLY?? Oh and to top ot off, she wants me to continue to take Asacol for another 2 months since it has been helping me greatly. Well, all this was on Thursday. I threw away the pills (Since I dont have anything and yet she still wants me to take them). So I have been off of them for 5 days now and what do ya know.. Last night I started back up with my diarrhea. It's so bad it wakes me up at night and now my back hurts from going so much.. The bone and muscle aches will come shortly. What am I supposed to do now???? I dont get it?? Why would she want me to take Asacol if I dont have anything? Where is all this diarrhea and bone and muscle ache coming from?! I have had it for 10 months now and no one can figure it out! GRRRRRRRRRRRRRRRRRRR

Posted 5/4/2010 2:39 PM (GMT 0)
Because according to one study the average diagnositic delay with crohns after displaying the symtoms was 7 years. You might have just caught it before it started doing damage.
Plus if the medication helps the patient and is relatively neutral like the med you were taking, it makes sense to keep treating the symptom at least until you see another speciallist, to know if you have something else going on.
I do not believe those two tests alone are enought to eliminate IBD. I would definately check into getting a pill camera done. I know I was absolutely furious to find out they had missed very severe disease in my small intestine, until I insisted on taking the pill camera to find out what was going on in the area they could not reach in regular tests and scopes.
Posted 5/4/2010 4:23 PM (GMT 0)
I agree that you should have a capsule endoscopy done.  After 8 years, having test after test done twice, having my gallbladder removed and having to switch GIs because the first couldn't figure out what was wrong, I had a capsule endoscopy and they found ulcerations in my terminal illeum.  I completely understand your frustration and, unfortunately, it just takes the right doctor and the right test to diagnose.  She's sending you to a rheumy because she is out of ideas and hoping the rheumy can figure it out.  Also, they tried me on some Crohn's meds before I was diagnosed just to see if they would help, so maybe that's why she wants you to stay on the meds...any information she can gather will help her figure out what's wrong with you.  So, yes, it's very frustrating, but it can't hurt to try meds and to get another opinion. 

Posted 5/5/2010 6:41 AM (GMT 0)
The pill cam is probably a must a this point but I would get a second opinion from a G.I. from a completely different practice. Theses G.I.s are not prophets or seers(although many think they are) and just like when your car breaks down, sometimes you have to search hard to find a good and the right mechanic. Have you had the promethius tests done(serology 7)? I know that you may not want to hear this, but I truly hope for your sake that the first G.I. is correct and you don't have this disease. It is so hard to be without answers to what is wrong with you body but that means that you still have a chance at completely healing it. If you do have this disease, you have a condition with no cure. Stay positive and pray that you have a condition such as a parasite that can be medicinally cured. If it is Crohn's disease than you will be prepared for that but hope for the best and don't be too set on one diagnosis because it will only drive you nuts.
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