Unknown Condition

Hello,

I have been lurking on here for some time and I have found the posts to be very helpful. I am however at a loss to what is wrong with me. The closest thing I can relate my symptoms to is Crohns, but both my Gastro doctors are not convinced. I wanted to share my experience to see if anybody has any advice.

It all started 7 years ago, when I became chronically nauseous and I got a EGD and was told I had GERD. I went on PPIs like Nexium and now Dexilant to promote the healing and it worked quite well for a few years. In the past two years I have been experiencing a resurgence of nausea and now abdominal pain. After a couple EGDs and pill capsule endoscopy, they found that my small bowel has been chronically inflammed and I have small ulcers throughout. I have tested negative for h pylori and negative on the inflammatory marker.

I used to get dull pain usually in my upper left quadrant but I can get it pretty much all quadrants. Sometimes I get sharper pain.

Now I am experiencing pain only when I press down on the abdominal area. I also tend to belch a lot. Some days I feel like I can burp for an entire day. The pain seems to come on randomly and slowly lessen over a period of three days. I can almost relate the pain to feel like if you are very sore from doing wat too many sit ups the prior day.

I have tried Pentasa which I felt kinda worked but I had to stop taking it due to insurance stopping coverage. I am currently trying LDN for the second month but I am unsure how well it is working. I am also going to see an allergist for testing.

It has just got me worried recently due to the resurgence of symptoms and the change in symptoms. Any advice is greatly appreciated!

Thanks
Alan

I'm kinda the opposite to gumby and not massively suspecting IBD, to be honest. My first thought was coeliac disease - have you ever tried a gluten-free diet?

I do second the idea of a colonoscopy with biopsies, however. Do you know if your pillcam showed ulcers as far down as the terminal ileum? And do you know if biopsies have been taken at the other end of the small bowel via an endoscopy?

Alternatively, you could look into having a double-balloon endoscopy. It's a relatively new and probably horribly expensive procedure, but it can visualise and take biopsies of the whole small bowel. Perhaps you can dispense with the allergist and put the money saved towards a DBE...? >.>

en.wikipedia.org/wiki/Double-balloon_enteroscopy

Guess coeliac disease is ruled out then :-/

I'm guessing the ulcers which showed up on your pill cam don't particularly look like Crohn's ulcers. I'm very far from being an expert, but Crohn's disease does tend to present with certain features that are typical to it; 'cobblestone' appearance, thickening of the bowel wall, 'skip' areas (ie healthy parts of the bowel in between diseased parts), etc.

Is it possible that this could be early Crohn's disease, with the ulcers being early apthous ones? I'd ask your GI docs that question.

I knew there was more than one IBD, e.g. UC, lymphocytic colitis, but not of the small bowel. Wiki lists a few of them, but all are various forms of colitis apart from one...

en.wikipedia.org/wiki/Inflammatory_bowel_disease

I presume stool samples have been taken and infectious causes tested for as well? Okay, it's dinner now; hope you find some answers soon, mate.