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Unsure Crohn's Diagnosis

  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. 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?
Dear T. Blass:
Fever, abdominal pain, weight loss, diarrhea, arthritis, and night sweats can be sympoms of Crohn's disease.   Crohn's disease can cause fat malabsorption because bile acids, necessary for absorption, are lost due to disease of the terminal ileum.  Fat malabsorption predisposes patients to increased oxalate absoprtion from the gut leading to oxalate kidney stones.  The B-12 deficiency could also be the result of Crohn's disease of the small intestine. A dedicated small bowel follow through x-ray study will provide evidence for  the Crohn's disease diagnosis.  
I do not think that steroids are precluded because of your diabetes.  Your letter indicates that you are having substantial problems from the Crohn's disease.  More aggressive treatment is needed to improve your quality of life.  There are pharmacological ways to control the blood glucose.  If you are adamant about not taking steroids, other immunosuppressive drugs can be tried, although I believe that steroids are the safest therapy.
Although you have many symptoms and laboratory findings that point towards Crohn's disease, these results are not specific for Crohn's disease alone.  Other gastrointestinal diseases such as pancreatic insufficiency or celiac sprue can present with these symptoms.  A specific diagnosis is needed before aggressive therapy is initiated.
I think that you require a gastroenterologist with expertise in the management of gastrointestinal diseases including Crohn's disease.  If you want, we would be happy to see you in the Division of Gastroenterology at Henry Ford Hospital, in order to review your records and investigate your symptoms.  You can arrange an appointment with Dr. Fogel, one of our experts in the treatment of inflammatory bowel disease.  He can be reached by calling the Henry Ford Physician Referral Line at (800) 653-6568.
This response is offered for your general information and should not replace the conclusions drawn from a careful and complete evaluation by your physician.
*keywords: Crohn's ileitis, fat malabsorption

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