First, there is a newsgroup: alt.support.crohn's-colitis is a
group I read regularly and might be of some help. I have CD and am
actually just recovering from surgery (resection of the terminal ilieum).
Second, Crohn's in the stomach is VERY rare. How did your drs
diagnose this? You never mentioned colonoscopy as a diagnostic tool but I
don't know how else Crohn's of the terminal ilieum can be diagnosed. It
needs to be biopsied to be confrimed. And that is how the stomach ulcer
should be diagnosed. What medications were you on before the stomach pain
appeared? I had terrible stomach pain this summer and it was a result of
the meds that I take. I also have "significant" reflux, however, which is
relatively common with Crohn's.
I would strongly recommed a second opinion. Reflux can be treated
with a variety of meds and if it is Crohn's in the stomach, there are
other treatments that could be considered if this is interferring with
you everyday life.
Also, drop into alt.support.crohn's-colitis. Lots of information
and lots of us with CD, UC and IBS.
Good luck and let me know it turns out. Waiting for dx and
treatment is so frustrating....I know.
On Sun, 26 Nov 1995 us011939 at interramp.com wrote:
> I NEED HELP OR ANY ADVICE...... It seems to be a puzzle that my doctors are not
> able to solve at this time.
>> from Mark
>> I am computer scientist capable of solving all sorts of problems. However to
> solve my most important problem, I feel completely helpless. Enough said..
>>> My doctors have diagnosed me few years(3 1/2) ago with Crohns disease. For most
> of the time disease stayed in terminal ileum part of small intestine. This has
> been confirmed by bunch of medical tests and endoscopies. The symptoms that I
> used to have was loose bowel movements twice a week. A day before a major flare
> up, I used to feel exhausted,no energy or vigor. I also had difficulty
> breathing at times. I never had a bloody diarrhea.
>> About 1 year ago, I felt a lot of pain the middle stomach. I also had a lot of
> acidity taste in the mouth and esophagus. Anyway, my doctors told me that they
> diagnosed crohn's ulcer in the stomach walls. However, they continue to tell me
> that it is very very minor. They put me on Pentasa (4x 4 times a day) and
> Prilosec(1 day). I don't have that acid taste anymore. It also helped a bit
> with the lower stomach(in the small intestine area). My bowel movements are
> pretty normal.
>> But, I feel a lot more burning pain and sensation in upper and mid stomach
> area. Sometimes, I feel that my guts are bursting inside. The other times, I
> feel that someone is scratching my guts from inside. Help!!!!!!
>> Also, about once a week, I don't seem to have any energy. I am completely
> exhausted. I find myself difficulty breathing normal air.I have a lot of pain
> in the eyes as well as toes and nails.
>>> Is there anything I could do? Could I take some other medicine. My doctors keep
> telling me that I don't need anything else. What about herbs? or vitamins(my
> vitamin tests were all normal). What I need to travel abroad to get any further
> medical treatment? Where?
>> Thank you very much.
>> New Jersey,USA
> Please respond to this newsgroup or my private address
>us011939 at interramp.com(stated also above)