Unsure Crohn's Diagnosis

Posted By T.Blass on July 28, 1998 at 17:42:18:







I have a 'tentative' diagnosis based on my classic clinical GI symptoms and I want to know how common it is for such an unsure diagnosis. Although my doctor said that he can't think of anything else it could be, this tentative diagnosis leaves my treatment and psychological state very shakey (shaky). I find it hard to deal with a disease that I 'probably' have. I would like to get your opinion and also any experience with patients that are similar to mine merely for validation.
Here is a rundown of my symptoms: started 5 years ago with unknown fevers and night sweats. I quickly developed diarrhea and severe abdominal pain. One colonoscopy biopsy came back "Peyers Patches, possible ileitus" but 2 others in the past 5 years came back negative. A year ago I became debilitated by the disease and developed arthritic symptoms which cleared aftger a diarrhea episode. I have pain every time I eat and if I do not have pain killers I do not eat at all because I would rather starve than be in pain.  My only positive lab results are a fecal fat showing malabsorption , oxolate levels double the normal which has lead to a total of 30 kidney stones in the past 7 months (4 removed surgically as well as uretal stents) , also a low B-12. 8 months ago I lost 60 pounds and have struggled to gain about 15 back but now that I am out of pain pills I am losing again (I have never been overweight and am at least 25 pounds underweight). I have read a lot about Crohn's and the low percentages of positive biopsy reports - is this the only way to get a firm diagnosis? Is my situation at all common?? Is there anything else you think it could be? I'm currently being treated with Pentasa and am a Type 1 Diabetic so I can't take steroids at all.  Any hope?