Part I
Greetings Everyone,
My name is Brian Miller.
I would like to share with you a very personal story. It is a story of a lifelong journey with disease, the loss of life, and the love of God.
Please be patient as I go through this because it is important that you understand the journey that I have taken. It is not just about disease, it is about the romance of the disease, the attachment to it, and the mêlée between emotions, intellect, and faith.
My journey starts around the year 1979. One day I was perfectly healthy and the next day I started to depreciate for no apparent reason. Everything I ate or drank caused a bout of diarrhea that lasted hours. My weight went from 180 to 140 in a week’s time. In desperation, I started buying books trying to figure out what was happening to me. I ran across a book called “Getting Along with Your Stomach.” I to this day have this book. I self diagnosed myself with Crohn’s disease. Once I was sure of what I had, I went to the doctor and proclaimed my diagnosis to the doctor’s annoyance. Of course there were the many tests and examines that took place to confirm my diagnosis. After the barium enemas, upper gastrointestinal endoscopy, x-rays, colonoscopy procedure, sigmoidoscopy, the diagnosis was confirmed. Then with boldness, I asked him to prescribe the medication needed to eliminate the problem. To my dismay, he stated there was no cure. He went on to say they did not even know what it was. What caused it or even how to treat it. At the time, it had a second name, which was called “The Jewish Disease” because of its prevalence in the Jewish community. Upon hearing this, I became depressed and wanted to die. I could not imagine living another day with this hideous condition, leave alone a lifetime. I begged God to take my life.
The doctor promptly put me on Prednisone and Sulfasalazine. This became a part of my diet for the next 20 years. I was on very high dosages of Prednisone. Ranging from 60 to 120 mg per day. I was on 120 mg day for over 5 years. I never really showed the typical side effects of Prednisone. At one point, I was admitted to the hospital for a week of observation in an effort to understand why I was not having side effects.
The years following my diagnosis were filled daily with pain. The pain was described by one doctor as that equivalent to birthing pains. The severity of pain was so intense at one point that I began to lose saliva control. I would drool so badly from my mouth that I would have to stand over a sink to keep it from pooling on the floor. I deteriorated into nothing as the years went by.
During the first twenty years of this disease, Prednisone and Sulfasalazine were the main treatment. Later Antibiotics (Ciprofloxacin or Metronidazole), Corticosteroids, 6-Mercaptopurine (6-MP), Methotrexate, and Cyclosporine when I ended up in emergency rooms. Which happened more than I can remember. None of these worked as the Prednisone did.
The human body was not designed to deal with the kind of pain I endured over the years and it took its toll on my body and my mind.
As the days went by, I would find myself on my knees begging God for death and cursing Him for not fulfilling my prayers. I grew to hate Him and love and cherish Him in an intimate way never before experienced. He became a part of me that is indescribable. He no longer was a book, He was a part of me, and He became me within my perception of who God was.
On a 6 month to a yearly basis, I went through the standard precautionary examinations. These included x-rays and colonoscopies. In one of these examinations, a blockage was found and my first bowel resection took place. During this procedure, they removed my ileum and part of the bowel on both sides. This was approximately 10 years into the disease.
During this time, my day-to-day life consisted of living with the disease. I went from denial, to fighting, to embracing it. I became attached to the disease, and what I call “romancing of disease” started. I lived my life around it. It became my excuse. I dressed each day for it. When I would enter a building, I looked for where the restroom was. Every breath I took was taken with the permission of the disease. It owned me.
End Part I
Greetings Everyone,
My name is Brian Miller.
I would like to share with you a very personal story. It is a story of a lifelong journey with disease, the loss of life, and the love of God.
Please be patient as I go through this because it is important that you understand the journey that I have taken. It is not just about disease, it is about the romance of the disease, the attachment to it, and the mêlée between emotions, intellect, and faith.
My journey starts around the year 1979. One day I was perfectly healthy and the next day I started to depreciate for no apparent reason. Everything I ate or drank caused a bout of diarrhea that lasted hours. My weight went from 180 to 140 in a week’s time. In desperation, I started buying books trying to figure out what was happening to me. I ran across a book called “Getting Along with Your Stomach.” I to this day have this book. I self diagnosed myself with Crohn’s disease. Once I was sure of what I had, I went to the doctor and proclaimed my diagnosis to the doctor’s annoyance. Of course there were the many tests and examines that took place to confirm my diagnosis. After the barium enemas, upper gastrointestinal endoscopy, x-rays, colonoscopy procedure, sigmoidoscopy, the diagnosis was confirmed. Then with boldness, I asked him to prescribe the medication needed to eliminate the problem. To my dismay, he stated there was no cure. He went on to say they did not even know what it was. What caused it or even how to treat it. At the time, it had a second name, which was called “The Jewish Disease” because of its prevalence in the Jewish community. Upon hearing this, I became depressed and wanted to die. I could not imagine living another day with this hideous condition, leave alone a lifetime. I begged God to take my life.
The doctor promptly put me on Prednisone and Sulfasalazine. This became a part of my diet for the next 20 years. I was on very high dosages of Prednisone. Ranging from 60 to 120 mg per day. I was on 120 mg day for over 5 years. I never really showed the typical side effects of Prednisone. At one point, I was admitted to the hospital for a week of observation in an effort to understand why I was not having side effects.
The years following my diagnosis were filled daily with pain. The pain was described by one doctor as that equivalent to birthing pains. The severity of pain was so intense at one point that I began to lose saliva control. I would drool so badly from my mouth that I would have to stand over a sink to keep it from pooling on the floor. I deteriorated into nothing as the years went by.
During the first twenty years of this disease, Prednisone and Sulfasalazine were the main treatment. Later Antibiotics (Ciprofloxacin or Metronidazole), Corticosteroids, 6-Mercaptopurine (6-MP), Methotrexate, and Cyclosporine when I ended up in emergency rooms. Which happened more than I can remember. None of these worked as the Prednisone did.
The human body was not designed to deal with the kind of pain I endured over the years and it took its toll on my body and my mind.
As the days went by, I would find myself on my knees begging God for death and cursing Him for not fulfilling my prayers. I grew to hate Him and love and cherish Him in an intimate way never before experienced. He became a part of me that is indescribable. He no longer was a book, He was a part of me, and He became me within my perception of who God was.
On a 6 month to a yearly basis, I went through the standard precautionary examinations. These included x-rays and colonoscopies. In one of these examinations, a blockage was found and my first bowel resection took place. During this procedure, they removed my ileum and part of the bowel on both sides. This was approximately 10 years into the disease.
During this time, my day-to-day life consisted of living with the disease. I went from denial, to fighting, to embracing it. I became attached to the disease, and what I call “romancing of disease” started. I lived my life around it. It became my excuse. I dressed each day for it. When I would enter a building, I looked for where the restroom was. Every breath I took was taken with the permission of the disease. It owned me.
End Part I
