Where do I start? Please Help!

[sickofit11]

I don’t know where to start...I have been sick for years. Initially, I accepted the IBS diagnosis. But then things got worse. Over the past three years I have been hospitalized 5 times. CT shows inflammation. Enterogram shows inflammation, stool studies show inflammation, bloodwork shows inflammation... Two years ago I even had a right collectomy because of a perforation. Still the GI would not diagnose me because only one colonoscopy showed moderate colitis. I was told the prep caused the colitis.

This last time I was in the hospital the doctor came in and said you definitely have Crohn's... (due to the enterogram, blood work, and stool studies). She put me on prednisone.
Then two weeks later I had a colonoscopy that was normal she said. I don’t think you have Crohn's. She did a capsule endoscopy 3 weeks later... normal (mind you this is while I’m on prednisone).

So...here I sit. Still unwell. Coming off prednisone. No answers! Can you have Crohn's with a normal biopsy?

Are there other types of IBD that would cause imaging, stool tests, and bloodwork to be abnormal, but you’d have a clear biopsy?

Help! I see the GI again in two weeks and I am close to losing it. So disgusted and frustrated. I feel like no one understands, believes me, or cares.

 

[cmack]

You could certainly have IBD and still have a clear biopsy. It's the best proof, (the current golden standard) of what's happening if they can get a biopsy showing disease. Pred can cause symptoms to diminish fairly quickly from what I have been told, this may have led to them finding less active disease or maybe none. I would discuss this with the doctor who did your blood work and stool studies, then put you on pred. I would possibly also seek a second opinion.

 

[Jabee]

Good grief! What explanation (aside from the prep) are your doctors giving you for the inflammation? There’s clearly a reason for it that needs to be treated. It’s not normal to have inflammation in the intestinal tract. I respond to prednisone very well, and the crohn’s is in my small bowel (usually jejunum and ileum) so often doesn’t show up on scopes. I also usually get scoped after a month or two on prednisone so it’s no surprise they don’t find anything. What are your symptoms (diarrhea? Constipation? Pain?) Can you see another specialist? It would be great if you could get some sort of long-term treatment for whatever you have.

 

[Lady Organic]

I had beautiful experiences of getting to complete remission within a week when taking prednisone. Maybe this is what happened to you.
Did you notice a spectucular improuvement of your symptoms when you took prednisone the 2 first weeks?
I would ask to repeat the colonoscopy when your symptoms return. wishing you well.