About 5-6 weeks after I first had symptoms I changed my health care provider from a local doctor to Emory Clinic. I choose Emory for two reasons; 1) even then there practices were integrated with all medical records on-line and available to all of the other doctors and 2) I thought that a teaching hospital would be better equipped to identify and treat a medical condition that was unknown.
I identified an internist at Emory based on his location as his office was the closest located to me and his medical school – that had a good reputation. I met with him and discussed the symptoms. It took about 2 months from the time I met with him to a final diagnosis of Cronkhite-Canada Syndrome. From an emotional point of view that was, and has been, the most difficult time for I knew I had a significant medical issue – but it was unknown.
There were many tests. Multiple blood tests, MRI’s, CCT’s, colonoscopy – three times (once at the GI specialist associated with the local doctor and twice at Emory), and endoscopy. I swallowed the pill that took a 6-7 hour video of my intestinal system.
Several possibilities were identified including; cancer and leukemia. The process to isolate and test a possible diagnosis would take about a week. The internist was calling to get me appointments with the different specialists. They would review the symptoms, review prior tests results, have me take additional tests, wait a week to receive the test results eliminate what they thought it might have been, communicate they did not know what it was and then repeat – the next week – trying to either eliminate or confirm a diagnosis. This went on for around 6-7 weeks. The internist’s plan was to go another week or so and if there was still no diagnosis to have me check in to the hospital. This would allow the tests to be performed concurrently.
I was spending hours on-line trying to identify my condition. The symptoms of diarrhea, alopecia, loss of appetite and blotchy and smooth hands (hyperpigmentation) are associated with several diseases. With the symptom of dying nails – I was able to narrow down the possible conditions. Eight years ago there were fewer articles on Cronkhite-Canada Syndrome than there are today – not that there are many today – for most of the articles provide summary information and mostly say the same thing. I identified two possibilities; 1) radiation poisoning and 2) Cronkhite-Canada Syndrome.
In addition to these symptoms were the results of the tests and procedures. Hundreds of polyps existed in my colon, stomach, and small intestine (though with an endoscopy only the duodenum was visible). There was a pattern – initially my colon had the most polyps, then the stomach and then the small intestine. In the first colonoscopy performed by Emory my colon had hundreds of polyps and my stomach a modest amount. Around 4-6 weeks later another colonoscopy and endoscopy was performed. The doctor that performed the procedure was concerned for I had progressed to hundreds of polyps in the stomach and many were located at a bad spot – where the contents left the stomach and entered the small intestine. She was concerned that I could get a blockage. Though I never did.
Prior to the second procedure I told the doctor that I believed the symptoms were associated with one of two conditions; radiation poisoning or CCS. She laughed about radiation poisoning. Cronkhite-Canada Syndrome was the diagnosis from the Emory pathologist. At last there was a diagnosis. It took two months from the time I went to Emory and over 3 months since I had the first sympoms.
I then spent many hours researching the information available that was limited. The first article I read on Google communicated within the first paragraph that the survival rate was around 50%.