Crohns in the stomach/esophagus?

Hi,

Does anyone have crohns in the stomach or esophagus? I'm having tests for back pain related to eating that we thought was gallbladder but it's looking increasingly more likely that my crohns has manifested in the stomach. I have a small amount at the terminal ilium and a tract of small intestine that's narrowed but we thought it to be fairly static.

I had a nissen fundoplication last year due to severe reflux and a splenectomy due to complications of the nf. Other options for the pain are related to the operation and haven't yet been ruled out.

I'm just looking for experience stories, what you feel pain wise and symptoms and how it's actually treated? I know very little about it but understand it to be one of the lesser forms of crohns and I can't find much about it online other than very generic info.

Thanks

Hi,

It's a bit of a relief to see you! My pain is hot pins and needles followed by hard aching in my rhs back and when it's bad the whole side aches and hurts. I think my biggest worry is the wrap being on place and then inflammation on top, it's going to be hard to swallow at all but I'm getting ahead of myself, no diagnosis as yet. I had inflammation in my stomach on a scope about 3 years ago when I first got ill but they put it down to reflux.

The nf has been brilliant, I used to be sick constantly and now I'm never sick! My operation went a little wrong and I lost my spleen too but it was worth it. I know there are side effects, motility issues etc and that could be what's going wrong with me at the moment but being able to eat things other than white carbs is good!

I had been on pentasa for several years but stopped earlier this year when an MRI said my pain wasn't an increase in crohns in the small intestine, my consultant has pointed out that the pain has increased massively since then which I guess isn't a great sign.

So am I right in thinking crohns in the stomach is drug/diet controlled only, no surgical options? I'm a bit concerned that potentially I had crohns in the esophagus causing the reflux and that it was missed as I wasn't scoped again after the very first one.

The pain in the chest sounds really familiar and something I would attribute to acid pre op and food getting stuck or spasms post op. Does it ever radiate up into your jaw?

How do you find humira? What else do you do to cope? I am really fed up today, it's relentless isn't it!

Thank you for you response!

Thanks vitaka, sorry to hear your suffering too.

Just back from the hospital, current diagnosis is gastritis in the stomach, biopsies taken including celiac and h pyoli (sp?) what defines the differance between crohns and gastritis? Is it the biopsie result? Celiac is interesting, apperantly being a red head I'm more at risk but I've never heard much about it.

4 weeks for the results! Bleurgh!!

Oh Larry, your poor boy :(. It's a hard enough disease to come to terms with as an adult, I can't imagine my 13 yr old boy suffering like that. My love and best wishes to him x