Cronkhite – Canada Syndrome
My experience living with a diagnosis of a rare condition known as Cronkhite – Canada Syndrome (CCS)
What is CCS ?
In 1955 two doctors one by the name of Leonard Cronkhite and the other Wilma Canada discovered CCS. Since 1955 there have only been approximately 450 – 500 known cases in the world of this condition.
Most of the cases have been found in Japan. The ratio is estimated to be 1 case per million population. The onset of CCS occurs on average around the age of 59. The range of age is 31 to 86.
MY PERSONAL BACKGROUND :
Born in May 1957, I was diagnosed with the CCS in 2016 at the age of, you guessed it, 59.
I was very privileged to be raised by two great and supportive parents, a stay at home Mom and a hard working father who by trade was an electrician and dairy farmer. I have one older brother and a younger sister. We were all raised in a very loving family environment. We were taught that honesty and hard work are the way to succeed in life.
Married in 1981 to Nancy, together we have raised three, very highly motivated, career oriented children, two daughters and a son. We are very proud of all of them and were blessed with our first grandchild in November of 2015.
Life it seemed, for my first 59 years, was textbook. I enjoyed playing various sports, but mainly baseball, golf, hockey and curling. I also played in a band for a number of years until our children were old enough to start their own lives in an active manner. Once they were old enough to play sports, I became involved in coaching their sports teams while they were growing up. Both my wife and I tried to stay involved in their lives. My wife and I also enjoyed a very active social life and very much valued the many friendships we have established over the years and still do.
I retired in April of 2015 at the age of 58 after 35 years of service with a public sector employer. I was rarely sick as was evident of the fact that I rarely if ever took a sick day, and was rarely if ever late for work. My career in the public sector environment included the operation of vehicles for the purpose of road and highway maintenance. My responsibilities included supervising various road related projects and finally for the past number of years was the maintenance manager for the Department, managing a large staff of employees, equipment, housing and a very large municipal budget.
EARLY SIGNS of PROBEMS AHEAD
For the first 58 years of my life I was very healthy, having never spent an overnight in a hospital and breaking only one bone (a finger) over the many years that I played sports. I lived a very active lifestyle.
The first sign of problems ahead came in September of 2015 while attending a family function. I noticed that I could not eat or drink very much and started to feel very severely bloated. I left the gathering and went for a walk but the feeling persisted. Later that afternoon we went to my daughter’s place where I tried again to walk off the severe bloating feeling. That evening we went out for dinner and I still could not eat a thing. After a good night’s sleep, I felt much better and the bloating feeling never really returned to that extreme.
A few days later I started to experience bleeding in my stools. Initially this did not trouble me as I had had issues like this in the past and they always were treated with over the counter products. However this time was different, these treatments did not work and the condition did not improve. I went to my doctor who assured me that there was nothing to worry about and prescribed over the counter medications. Again after a couple of weeks the condition did not improve.
(My weight at his time was 240 lbs.)
During the first week in November 2015, I knew something was really wrong when I lost my ability to taste food. Food started to taste metallic, really awful, nothing tasted as it should. I made an appointment to see my family doctor. I told him that the bleeding problems were no better and that now I had lost my ability to taste food as well as my appetite. I literally told him that he needed to book me for a colonoscopy, something that he had been reluctant to do because of the results I had received from stool sample screening that he had me complete every two years.
I must mentioned that, at this period in time, my mental state, for the first time in my life, had become very fragile. I started to feel a great deal of anxiety. I will say that in order to counteract the negative feelings I was having over my deteriorating health ( Weight Loss, Inability to Taste Food and lack of appetite) I went for many, many long walks. Even during some very stormy weather, I would get out and walk to relieve the anxiety of what was happening to my health. Little did I know that my journey was just beginning.
On December 12th 2015 I had my first colonoscopy, a week later the surgeon told me that he had removed three very large suspicious polyps, luckily none of them were cancerous. However he stated that I was a very UNIQUE individual. Not being sure what he meant by this, he explained that he had never seen so many polyps in a colon before. He explained that as a result of what he had discovered in the scope of my colon, there was an immediate need for him to go back in and remove more polyps.
On December 22, 2015 I had my second colonoscopy, There were an additional 11 polyps removed. On January 22, 2016 the results of the pathology report were revealed. Thankfully the report indicated that all of the polyps removed were benign. However, due to the number of polyps still in my colon the surgeon wanted me to see a geneticist to have testing done, which I agreed to. The request was made at this time by the surgeon, however I never heard from the geneticist in London until June 2016. I was booked for an appointment at St Joseph’s Hospital in London in mid July 2016.
It was during this period of time (January 22, 2016) that I made a conscious effort to take a more positive approach to my feelings of negativity about my deteriorating health. I decided that I needed to begin to think positive and work toward a solution of trying to regain my health and search deeper for the reason behind my condition. Little did I know that it would be a few more months before the answers would come. However thinking more positively, greatly improved and totally eliminated my anxiety.
In mid February 2016 I started to experience constant diarrhea. I went to the emergency department at the hospital after about a week of this condition. Tests, as I was told by the doctors, determined that there was nothing wrong with me and I was prescribed probiotics to correct the problem. However they did not work. By this time I had lost in the neighborhood of about 30 lbs since November 2015.
The emergency doctor while conducting this examination discovered that my blood pressure was extremely low. I had up to this point always had normal blood pressure. This condition would exist for many months.
By March 2016, new symptoms were starting to surface, my fingernails were starting to deteriorate. I questioned my doctor about this and he had no idea what was causing this. Shortly thereafter I noticed that my hair became very brittle and started to fall out. By the end of March (2016) there was not one hair left on my body. Eyelashes were gone, all body and facial hair were also gone.
It was becoming very difficult, mentally, to comprehend what was happening to me. I was being questioned almost daily from staff at my workplace wondering if I was OK. My answer was, to the best of my knowledge and what doctors were telling me, there is nothing wrong with me that could be explained.
During this period of time, I had continued to finish out the curling season at our curling club. There was one guy that I had known for a few years that I had been curling with. He and his wife had left for a couple of weeks on a vacation, when they returned to the curling cub he did not recognize me, as we curled on the ice the night of their return. My weight loss along with my hair loss had changed my appearance to the point where people that had known me for many years had difficulty recognizing me.
The Doctors continued to search for answers, to the point where I had completed ultra sound on all my vital organs, nothing of any concern was found.
On APRIL 29th I retired from my job of 35 years. This decision had been made many months before. My decision to retire had nothing to do with the illness that was consuming me.
The waiting game continued until June 2016 when I finally received a notice in the mail informing me that an appointment was set up for me for mid July with a Geneticist in London. After meeting with the Geneticist, it was determined through doctors reports and research by the geneticist that I could possibly have a condition called Cronkhite Canada Syndrome.
To try and determine the validity of this diagnosis, I was set up to meet with Dr Hussein a Gastrologist in London Ontario, on the first week of August. He would conduct an Endoscopic Procedure on my stomach as well as another Colonoscopy.
It was determined after these procedures that I indeed had Cronkhite Canada Syndrome. The next day I was immediately sent to Doctor Adam Rahman in the London Health Sciences Center who would become the main physician who was going to be treating me for this condition moving forward.
By mid December 2016, I was very weak. I had lost over 95 lbs since October 2015. Due to my alarming weight loss and fast deteriorating heath, a conference call between my wife and I and Doctor Rahman was set up. My wife explained to him that something needed to be done immediately due to my frail condition. Dr Rahman asked me if I would agree to start a treatment of Imuran and prednizone knowing the risk factors. I agreed, saying that I had nothing to lose.
Started taking IMURAN and PREDNIZONE
I was admitted to the London Health Sciences Center January 13th, 2017 to have a PICC line inserted so that I could start TPN treatment (12 hour infusions per day of nutrients directly into my bloodstream). My weight at this point was about 145 lbs. I spent 6 days in the hospital until the nutritionists were satisfied that the correct level of TPN had been achieved.
Within 5 weeks I had regained not only some much needed energy I had gained approximately 30 lbs and by mid to late February was up to approximately 180 lbs. I was feeling much better physically and had much needed energy and strength back in my legs and body to start getting out and about.
By the end of February I was totally weaned off of Prednisone. (No longer taking IMURAN by this time)
Started REMICADE treatment on March 14, 2017. I received the first two infusions over the next two weeks then was put on a schedule of taking an infusion once every 8 weeks and continue on this treatment schedule to date.
My weight by late October 2017 was between 230 lbs and am having to exercise and watch my diet to not only keep my weight down, but help to regulate a high cholesterol count in my blood tests. My fingernails have regrown and my hair has come back to pre- November 2015 condition.
I went through a colonoscopy and an endoscopic procedure on November 1st at London University Hospital by Doctor Rahman so he could look at the progress and my recovery to health over the past several months.
The procedures indicted that the polyps in both the stomach and colon have been significantly reduced in size since my last colonoscopy. I was scheduled to return to London on March 28, 2018 to possibly have some of the larger remaining polyps removed by Dr. Hussein.
Dr. Hussein at St Joe’s Hospital conducted an endoscopic procedure on my stomach and a colonoscopy. It was determined by Dr Hussein that the remaining polyps have been reduced in size but there are still many polyps. It was decided that I would return to his office on April 24, 2018 to find out the results of biopsies of some of the polyps that he took samples of. We will then discuss the path forward and how we should proceed with determining how to deal with the remaining polyps.
Surgery is scheduled for June 1st 2018 to remove more polyps.
END (April 3,2018)
To Be Continued