Which signs/results are significant?

[sarikate]

I am a 26-year-old female and recently underwent tests at the Mayo Clinic to pinpoint the cause of a nearly year-long bout of chronic diarrhea, weight loss (>20 pounds), abdominal pain, episodic mouth ulcers, and intermittent fever.  I also experienced symptomatic gallstones and had laparoscopic surgery about 10 weeks ago.  At the Mayo, I had innumerable stool studies for parasites and bacterial infections, and all were negative.  Upper endoscopy showed mild gastric erosions; biopsies showed no evidence of H. pylori.  Colonoscopy with terminal ileal exam and biopsies was completely normal.  CT w/ contrast was normal.  I had a positive fecal occult blood test and positive fecal leukocyte test.  Previously, I had a small bowel follow-through that showed prominent folds in the duodenum.  Also previously, a wireless capsule study was done and read as normal.  I was told that I had post-infectious IBS and to continue taking Lomotil and hyoscyamine.

I have been back for two weeks and have had a nearly constant low-grade fever of about 100 degrees.  My diarrhea has been consistent despite regular doses of Lomotil and Levbid.  The Mayo docs agreed that weight loss, fevers, and positive FOB and leukocytes should not occur with IBS, but didn't have other answers for me.

I am working with a wonderful PCP now who is very helpful and has been doing some research for me.  I thought I might give her a hand.  We know that my symptoms seem consistent with IBD, but the test results are vague.  My questions: could these findings - gastric erosions, bowel wall thickening, positive FOB/leukocytes - indicate Crohn's disease despite the otherwise negative endoscopy findings?  Is it unheard of to start empiric treatment for Crohn's despite no physical evidence of the disease in the intestine?  I know some treatments can be tough on the body, but this illness is driving me up the wall.  

Thanks in advance for your response!

[Kevin Pho, MD]

You have clearly been through a comprehensive set of tests that would have ruled out most of the major causes.  Regarding Crohn's disease, this can be difficult to diagnose.  At times, the small bowel can be difficult to visualize, despite the capsule endoscopy study.  

Various antibody tests can be done for the diagnosis.  This can include the anti-OmpC antibody which is highly specific for the disease (i.e. is helpful if the test is positive).  Another antibody test would be the P-ANCA and the ASCA test - and can be used to differentiate from ulcerative colitis.  In Crohn's disease the P-ANCA would be negative and ASCA test positive.  

Normally a diagnosis is needed before treatment is considered for Crohn's disease.

These options can be discussed with your personal physician.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
http://www.straightfromthedoc.com

[MLWTR]

Crohn's can be an absolute beast to diagnose. My sympathies.

Since you ask about empiric treatment, you might want to ask your PCP about the possibility of trying a course of total enteral nutrition, specifically an elemental or polymeric diet. These are liquid diets used for four to eight weeks to achieve remission in Crohn's disease. They don't work for everyone, but they seem to be particularly effective in people with Crohn's in the small intestine. This is not an alternative therapy -- these diets have been tested in clinical trials and have been used since the 1980s in Crohn's disease, primarily in children, although many adults have also benefited. They are not popular in United States, because doctors feel that it is too difficult to ask a patient to have nothing but a liquid diet for a matter of weeks. However they are first-line therapies in a number of countries, including Canada, the United Kingdom, and Japan. The advantage is the lack of side effects, which might make them a good choice to use in your case, where the diagnosis is unclear. A rapid response to an elemental or polymeric diet might help to confirm a diagnosis of Crohn's disease.

Anyway, that's just an idea that you might want to discuss with your doctor. Best of luck.

[sarikate]

Thanks ML.  Giving up all foods for 4-8 weeks sounds daunting, but then again, so does continuing to have diarrhea 20 times a day for the rest of my life.  I figure anything is worth a try...will ask her about it!