Just when I was starting to accept my Crohn's diagnosis, I receive a letter from a panel of GI doctors who agreed to study my "inconclusive" case. This is 7 years after my original diagnosis. What am I supposed to think now? I want to be happy... but I don't believe it!!
I have reviewed your medical records in detail and spoken with several other doctors in my office as well. I have also read over all of the information that you provided to this office.
I was impressed on examining you and reviewing the records that the evidence for Crohn's Disease is certainly very tenuous. The biopsies that have previously been obtained are quite nonspecific. Based on your current symptoms and examination if one were to calculate a Crohn's Disease Activity Index for you (whether or not you actually have Crohn's Disease this can be done). The numbers arrived at would be extremely low, probably in the 150 range or less. Patients with CDAI of this level are not candidates for advanced therapy such as bioligic terapies, immune modulators, and so forth. In other words, we consider patients with CDAI of this level as being either under total excellent control, in remission, or asymptomatic.
I reviewed the assays that were done by Prometheus Laboratories. The most recent assay does include two markers, which were slightly elevated and these are often seen in patients with Crohn's disease. I will point out, however, that information about how these markers react to other inflammatory conditions such as sinusitis are unknown. I would like to raise the possibility that these markers might be related to your severe sinusitis and may not have any real meaning with regard to your gastrointestinal complaints.
I believe you have been studied adequately from the point of view of colonoscopies and probably do not need another examination at this point in time.
If one reviews your symptoms they are classic for irritable bowel syndrome. My own suggestions at this point woul be to concentrate on treatment for IBS and maximizing management of your symptoms. I would be very reluctant to apply a label of Crohn's disease to you at this point in time and I certainly would not recommend that you be treated actively for a diagnosis of Crohn's disease based on our current findings.