No ulcers- but still have symptoms?

[LindaS]

no ulcers- but still have symptoms?

I had an upper endoscopy and colonoscopy yesterday. The colonoscopy showed all the ulcers in my large intestine and rectum were gone However, I still have all the same symptoms, pain, diarrhea and nausea. The upper endoscopy didn't show anything out of the ordinary, but my doctor did take some biopsies. He said that depending on what they show, I'll have to do a pill cam.

My question is if the ulcers and inflammation is gone, why aren't my symptoms?

 

[Crohn's 35]

Funny question eh? Well I have had that many times, if you are on steroids or something for inflammation it can show a false negative. They have to get the right spot for a biopsy. Trust me, I have had many many scopes, and tests, and they showed nothing. Just to let you know Pill cams are not the best detection either. Way too many pics rangeing from 30,000 to 70, 000n depending if it is a one camera eye or two, and when is checked many pics are skipped automatically and that is where it could be seen. Could you imagine going through that many pictures???? The other thing is, if you are narrowed it isnt recommended... could get stuck. Hope I helped.

What symptoms are you still getting?

 

[LindaS]

Thanks Pen. I am on budesonide (entocort), so maybe that is what is disguising the ulcers. I think (I was really out of it yesterday) I do a trial run on a capsule then if that goes through I do the camera. It is mainly to see the parts of my small intestine that can't be seen from the upper endoscopy and colonoscopy, since I told my doc I will never do another MRI again (I didn't realize how bad my claustrophobia is, when he ordered a second one I had an anxiety attack just thinking about it, so even meds during the test won't help).

I'm having come and go severe pain on the right side, diarrhea and occasional nausea, especially since I recently tapered the budesonide as well as extreme fatigue. I am worried that my insurance will see there are no more ulcers and cut off my disability insurance. I know if I went back to work, I'd never make it due to the stress of my workplace and not being able to take naps, and I really don't want to end up back in the hospital.

 

[LindaS]

My doctor's office just called with the biopsy results from yesterday. The biopsies showed duodenitis and inflammation of the lining of the small intestine. I am have a pill cam scheduled as well as a blood test to rule out celiac. I pray it is not celiac! It is bad enough to have Crohn's, but I don't want to have celiac as well. If it isn't celiac, then according to my doctor's patient coordinator, it is the Crohn's. I almost feel relieved to get these test results back, because I was starting to think the symptoms were in my head! That is how messed up this disease has made me.

Oh, and my long term disability insurance called me earlier and told me my disability claim was approved. That means so much less stress for me!