MY STORY
I was 33 when I was diagnosed with Crohn’s disease. I was living in Murfreesboro, Tennessee, at the time and my life was packed full. I had recently completed an MBA on the GI Bill, having served 3 years in the army, including a one-year tour in Vietnam as a first lieutenant. I bought a house, got married, and went through the process of getting legal custody of my sons in another state. I ran a janitorial service that I had started while in grad school, and tried to figure out my career path. I also liked to play tennis once or twice a week in the spring, summer and fall, and racquetball in the off season. My philosophy was simple: work hard, play hard.
One day in 1978, I decided to stop at a medical clinic to get something for my hemorrhoids. They had never been a problem before, but I had been having a lot of diarrhea lately. I didn’t consider it a big deal, certainly not important enough to see my regular doctor. The clinic was convenient, perfect for a busy man like me.
When they put me on the scales, I was surprised, no, in disbelief, to see I weighed only 133 pounds. At just under 6 feet tall, I had weighed around 165 pounds since I was a senior in high school. The doctor on call checked me out and decided I needed some valium. I knew something was wrong with me, but I was pretty sure it wasn’t my nerves.
I never filled that prescription, but I made an appointment with my regular doctor, an internal medicine physician. The in-office procedure, a rigid sigmoidoscopy exam, showed nothing, so he sent me for a series of GI tract tests. I was X-rayed from the mouth down to my toes, including a barium enema. The latter led to the diagnosis of Crohn’s disease. My doctor prescribed Azulfidine, a combination of sulfur and aspirin, and according to him, the drug of choice at the time. In fact, Azulfidine became my maintenance treatment until 2004. From time to time when I had an acute flare-up, I often used Prednisone, a synthetic steroid that acts as an immune suppressant.
The first few years following my diagnosis were a roller coaster. There were times when I felt so bad I thought my life as I knew it was over. I imagined what my existence would be like as an invalid, confined in a bed or a wheelchair. I figured I could always play computer chess, a game I liked, and would be able to study further. But the thought of being a burden to my wife and children was difficult to swallow. I had never thought of myself as being an overly proud man, but I had my limits. Fortunately, more often than not, everything was under control. True, my health was not perfect but the medicines were working. I could play some tennis, work hard, and take care of my family. Life, for the most part, was pretty good.
By then, 7 years after my initial diagnosis, I was engaged in a new career. I owned a landscaping company with several employees. We designed, installed and maintained lawns, shrubs, trees and irrigation systems. I had several employees. I’m the kind of person who loves to do a lot of different things. I spent about half my time on the administrative side, designing, bookkeeping, processing payroll, creating sales, maintaining accounts payable, etc. The other half, I worked on the job, making sure it was done efficiently and professionally. I was a hands-on manager and would do the physical labor if I was caught up on my other responsibilities or we needed more labor to get the job done. Like most entrepreneurs, I put in many more than 40 hours a week.
One Friday morning, it started to rain and rain hard, which meant no outside work. The employees loved a Friday off. I did too, so I handed out checks and shut down shop for the rest of the week. I was hungry and stopped on the way home at one of the burger chain restaurants. I ordered a double burger with cheese and bacon, a Coke and French fries. Boy, it was good.
At home, sated and enjoying the sound of the rain, I soon fell asleep on the couch. An hour or two later, I got up to go to the bathroom. Crash! I passed out and fell. When I came to and tried to get up—crash!—I went down again. After the fourth time, I decided to call someone to take me to the hospital. When my ride pulled up, I literally crawled out to the car. Initially, I was okay as long as I didn’t stand up.
It turned out that I was dehydrated because of a blockage in my intestines. Blood is in short supply when the body is dehydrated. The brain, to protect itself and get the blood supply it needs, forces one to pass out. Falling and being on the ground allows more blood to get to the brain and if the head didn’t hit anything on the way down, the brain remains unharmed and back in business. Ingenious, but annoying! Luckily, I suffered no real damage.
At the only city hospital, I learned that my regular doctor was out of town on vacation and that Dr. X was taking care of his patients. Dr. X was not the most respected doctor around, but I didn’t know that at the time. After a couple of days of suffering with forced throwing up, where the vomit is projected across the room, another doctor convinced Dr. X to order a tube put through my nose and throat and into my stomach and to put me on steroids. The steroids sounded fine, but a tube down my throat was pretty scary. I managed it after gagging a few times, and it wasn’t so bad until a couple of days later when my throat got really sore. Eventually, I was on my way home and back to work.
But 2 months later, I was back in the hospital after passing out again. Even though I swore to myself I would never use Dr. X again, I saw him in the hall and being in considerable pain, asked him to come into the examining room. This time I was able to accept the tube going down the throat without gagging. It wasn’t even that bad going down. Ironically, just before I had called the doctor in, my wife had been telling the hospital staff we would see any doctor except Dr. X. He had overheard her and, either because of his pride or his desire to do damage control for his reputation, I received the best care ever. In a few days, I was okay and back to work.
About a month later, I was passing out again. I dialed for help. By then, I had hit rock bottom, psychologically. I couldn’t talk without sobbing. On the way to the hospital, I wept without tears. I was sure I was going to be an invalid.
My regular doctor was finally back in town and called in a new GI tract specialist, Murfreesboro’s first gastroenterologist. For me, he was a ray of hope. I assumed he would have lots of specialized knowledge and skill as well as great advice. Maybe I wouldn’t end up an invalid after all. But he wasn’t all that different in his approach. He relied on drugs and just like my doctors during previous flair-ups, told me to eat and do whatever I wanted. However, this time I backed off a bit on his advice.
By then, I had come to understand that I had to take more responsibility for my health on my own. I realized that this bright young specialist did not have any magic pills and, while extremely helpful, had neither the time nor the knowledge to make me healthy enough to live a decent life. I had three not very pleasant stays in the hospital in just a few months, and I was determined it wasn’t going to continue that way. I didn’t yet understand the extent of the power I had in fighting Crohn’s disease. I vowed to be more engaged in the battles and eventually understood that my actions and decisions were as important as my doctor’s.
I began seeing the gastroenterologist monthly for vitamin B-12 shots and general checkups. He would listen to my gut. If my bowel sounds were weak, indicating constriction, he ordered X-rays to be taken and often prescribed Prednisone, as well as weekly visits, until the gut opened up. Lucky for me, he always got me off the steroids as soon as possible.
A graduate from the highly respected Vanderbilt Medical School, he had just completed his residency and was well up to date on the latest Crohn’s treatment. Confident and driven, he thought medicine was the only answer to my problems. He didn’t believe that diet had any effect on Crohn’s disease. Figuring that stress was a normal part of life, he never mentioned I might consider learning how to manage it.
So, now I had a specialist I liked and respected. There was just one catch; I was still on the same track. I never traveled out of town without some Prednisone in my pocket. I still worked and played hard, but I backed off a little and was a little more careful about what I ate.
Three years later I had to have emergency surgery. Three and a half feet of my small intestine, including my ileum, were removed. I was taken off all medications. I understood that Crohn’s almost always returns after surgery. I had even read that if it doesn’t come back, it wasn’t really Crohn’s disease. Therefore, I was disappointed, but not surprised when a few weeks later, the diagnosis came back positive. I was put back on Azulfidine.
I was 43 years old and figured I was on track to have surgery every 10 years or so. I joked that if I lost 3 ½ feet each time, I could make it to age 100 before I ran out of small intestine. Still, it didn’t sound all that great, so I decided to try a new approach. First, I gradually began to change my diet. I started going to Wendy’s instead of McDonald’s and Burger King because I could get baked potatoes instead of French fries and the hamburgers were not as greasy. I started observing what I ate and how it affected me. I tried to cut back on greasy food and red meat, eating more chicken. Years later, I decided to do without meat altogether and become a vegetarian. (I shed more light on my dietary research in Chapter 4.)
Changing my lifestyle was a subtle process that took place over a period of several years. I ate a healthier diet and started practicing yoga at home, doing a 15 to 30 minute routine before work.
Before my surgery, I had been attending a weekly yoga class, not because of the philosophical or spiritual aspects, but because I believed my athletic pursuits would be better served if I stretched more. While playing racquetball a few years earlier, I had ruptured my Achilles tendon. The surgical repair had been successful, but I knew I needed to stretch my entire body as well as the repaired tendon. Yoga proved to be much more than a means of increasing my range of motion. Eventually, it became a big part of my Crohn’s management.
Just before I turned 50, my life took another big turn. My sixteen-year marriage was coming to an end. The landscaping business was doing great, but it didn’t provide much satisfaction anymore. I think I thrive on challenges, and although I enjoyed the success, I found the routine stifling. So I sold the business and began the process of developing a new career.
I went to San Francisco, studied yoga for 2 years and became a certified instructor. When I returned to Tennessee, I opened a yoga studio and started to hold classes. Later, I completed a 600-hour course in Tennessee and became a licensed therapeutic massage therapist as well. I wanted to learn all I could about the body and how to make it healthy.
The effect of yoga on my overall health, not just on my Crohn’s disease, was dramatic. My posture greatly improved. Even my bowed legs were less bowed. There is no doubt in my mind that the process of opening up my body with yoga got rid of toxins that were stored there. The process of doing yoga also encourages the mind to be more open to new ideas. The more I studied yoga, the healthier my lifestyle became, especially as it related to diet and stress.
A couple of years after opening my yoga studio, I met Colette, who became my wife. She was a massage therapist, an organic gardener, a great cook and a vegetarian. Not only did she love camping and the outdoors, she had a spirit of adventure. Years earlier, she had overcome some serious health challenges of her own and, like me, had to live a healthy lifestyle. She found the book, Eating Right for a Bad Gut, by Dr. James Scala. It took two readings for its wisdom and knowledge to fully penetrate. Since then it has helped bring my Crohn’s management to another level.
In 2005, Colette and I moved to Southwest Florida. I cut back on yoga but increased my time spent in nature and doing aerobic exercise. Taking fish oils, eating a very healthy diet, and living a healthy lifestyle allowed me to get off of medications.
But then, I got careless. True to my impulsive nature, I thought I could be less mindful and do just as well. Over the next 7 years, I gave up my disciplined, moderate lifestyle. It was a downward spiral that resulted in ever more frequent days when I felt fatigued and unable to do much. I had annual physicals and an excellent general practitioner as my doctor, but I realized that maybe it was time again for a gut specialist.
In June of 2011, I met with a new gastroenterologist. My energy level had been quite low for a couple of months. In retrospect, it had been more off than on for almost a whole year. The doctor prescribed Asacol and told me to come back in 2 weeks, if I was still having problems. At that point, he would probably prescribe my old stand-by, Prednisone.
When I went to see him 2 weeks later, I was amazed and annoyed to learn he was on vacation. Upset, but proactive, I went to my regular doctor and he wrote a prescription for Prednisone. On the recommendation of one of my wife’s friends, I scheduled an appointment with another gastroenterologist. He was great. The first office visit with him lasted 30 minutes, unusual in Florida, where the average time spent with a doctor is less than 7 minutes! After a colonoscopy, digestive tract X-rays, and a couple of rounds of steroids, we settled on Asacol for my maintenance medication. He and his assistant got me back on track, and I’ve been in good shape ever since.
So the question is, has Crohn’s been a gift or a curse in my life? The disease has placed some limits on what I do and what I eat, and it has robbed me of considerable energy. At the same time, it has provided me with many gifts, including humility, greater flexibility in facing daily challenges, and satisfaction in achievements with a “handicap.” I think in many ways I am healthier for it because I had to be more health conscious.
I have become a practitioner of moderation. I run a little, bicycle a bit, do some sailing and camping, engage in socializing, occasionally drink beer or wine, and eat great tasting foods. I practice yoga and meditation. Colette and I limit eating out, not only because it is expensive, but because I often pay the price later on in other ways. Yes, I have had Crohn’s disease for 35 years, and I have to be prudent in what I do, but I live a great life; and I believe many others with Crohn’s can do so, too.
I was 33 when I was diagnosed with Crohn’s disease. I was living in Murfreesboro, Tennessee, at the time and my life was packed full. I had recently completed an MBA on the GI Bill, having served 3 years in the army, including a one-year tour in Vietnam as a first lieutenant. I bought a house, got married, and went through the process of getting legal custody of my sons in another state. I ran a janitorial service that I had started while in grad school, and tried to figure out my career path. I also liked to play tennis once or twice a week in the spring, summer and fall, and racquetball in the off season. My philosophy was simple: work hard, play hard.
One day in 1978, I decided to stop at a medical clinic to get something for my hemorrhoids. They had never been a problem before, but I had been having a lot of diarrhea lately. I didn’t consider it a big deal, certainly not important enough to see my regular doctor. The clinic was convenient, perfect for a busy man like me.
When they put me on the scales, I was surprised, no, in disbelief, to see I weighed only 133 pounds. At just under 6 feet tall, I had weighed around 165 pounds since I was a senior in high school. The doctor on call checked me out and decided I needed some valium. I knew something was wrong with me, but I was pretty sure it wasn’t my nerves.
I never filled that prescription, but I made an appointment with my regular doctor, an internal medicine physician. The in-office procedure, a rigid sigmoidoscopy exam, showed nothing, so he sent me for a series of GI tract tests. I was X-rayed from the mouth down to my toes, including a barium enema. The latter led to the diagnosis of Crohn’s disease. My doctor prescribed Azulfidine, a combination of sulfur and aspirin, and according to him, the drug of choice at the time. In fact, Azulfidine became my maintenance treatment until 2004. From time to time when I had an acute flare-up, I often used Prednisone, a synthetic steroid that acts as an immune suppressant.
The first few years following my diagnosis were a roller coaster. There were times when I felt so bad I thought my life as I knew it was over. I imagined what my existence would be like as an invalid, confined in a bed or a wheelchair. I figured I could always play computer chess, a game I liked, and would be able to study further. But the thought of being a burden to my wife and children was difficult to swallow. I had never thought of myself as being an overly proud man, but I had my limits. Fortunately, more often than not, everything was under control. True, my health was not perfect but the medicines were working. I could play some tennis, work hard, and take care of my family. Life, for the most part, was pretty good.
By then, 7 years after my initial diagnosis, I was engaged in a new career. I owned a landscaping company with several employees. We designed, installed and maintained lawns, shrubs, trees and irrigation systems. I had several employees. I’m the kind of person who loves to do a lot of different things. I spent about half my time on the administrative side, designing, bookkeeping, processing payroll, creating sales, maintaining accounts payable, etc. The other half, I worked on the job, making sure it was done efficiently and professionally. I was a hands-on manager and would do the physical labor if I was caught up on my other responsibilities or we needed more labor to get the job done. Like most entrepreneurs, I put in many more than 40 hours a week.
One Friday morning, it started to rain and rain hard, which meant no outside work. The employees loved a Friday off. I did too, so I handed out checks and shut down shop for the rest of the week. I was hungry and stopped on the way home at one of the burger chain restaurants. I ordered a double burger with cheese and bacon, a Coke and French fries. Boy, it was good.
At home, sated and enjoying the sound of the rain, I soon fell asleep on the couch. An hour or two later, I got up to go to the bathroom. Crash! I passed out and fell. When I came to and tried to get up—crash!—I went down again. After the fourth time, I decided to call someone to take me to the hospital. When my ride pulled up, I literally crawled out to the car. Initially, I was okay as long as I didn’t stand up.
It turned out that I was dehydrated because of a blockage in my intestines. Blood is in short supply when the body is dehydrated. The brain, to protect itself and get the blood supply it needs, forces one to pass out. Falling and being on the ground allows more blood to get to the brain and if the head didn’t hit anything on the way down, the brain remains unharmed and back in business. Ingenious, but annoying! Luckily, I suffered no real damage.
At the only city hospital, I learned that my regular doctor was out of town on vacation and that Dr. X was taking care of his patients. Dr. X was not the most respected doctor around, but I didn’t know that at the time. After a couple of days of suffering with forced throwing up, where the vomit is projected across the room, another doctor convinced Dr. X to order a tube put through my nose and throat and into my stomach and to put me on steroids. The steroids sounded fine, but a tube down my throat was pretty scary. I managed it after gagging a few times, and it wasn’t so bad until a couple of days later when my throat got really sore. Eventually, I was on my way home and back to work.
But 2 months later, I was back in the hospital after passing out again. Even though I swore to myself I would never use Dr. X again, I saw him in the hall and being in considerable pain, asked him to come into the examining room. This time I was able to accept the tube going down the throat without gagging. It wasn’t even that bad going down. Ironically, just before I had called the doctor in, my wife had been telling the hospital staff we would see any doctor except Dr. X. He had overheard her and, either because of his pride or his desire to do damage control for his reputation, I received the best care ever. In a few days, I was okay and back to work.
About a month later, I was passing out again. I dialed for help. By then, I had hit rock bottom, psychologically. I couldn’t talk without sobbing. On the way to the hospital, I wept without tears. I was sure I was going to be an invalid.
My regular doctor was finally back in town and called in a new GI tract specialist, Murfreesboro’s first gastroenterologist. For me, he was a ray of hope. I assumed he would have lots of specialized knowledge and skill as well as great advice. Maybe I wouldn’t end up an invalid after all. But he wasn’t all that different in his approach. He relied on drugs and just like my doctors during previous flair-ups, told me to eat and do whatever I wanted. However, this time I backed off a bit on his advice.
By then, I had come to understand that I had to take more responsibility for my health on my own. I realized that this bright young specialist did not have any magic pills and, while extremely helpful, had neither the time nor the knowledge to make me healthy enough to live a decent life. I had three not very pleasant stays in the hospital in just a few months, and I was determined it wasn’t going to continue that way. I didn’t yet understand the extent of the power I had in fighting Crohn’s disease. I vowed to be more engaged in the battles and eventually understood that my actions and decisions were as important as my doctor’s.
I began seeing the gastroenterologist monthly for vitamin B-12 shots and general checkups. He would listen to my gut. If my bowel sounds were weak, indicating constriction, he ordered X-rays to be taken and often prescribed Prednisone, as well as weekly visits, until the gut opened up. Lucky for me, he always got me off the steroids as soon as possible.
A graduate from the highly respected Vanderbilt Medical School, he had just completed his residency and was well up to date on the latest Crohn’s treatment. Confident and driven, he thought medicine was the only answer to my problems. He didn’t believe that diet had any effect on Crohn’s disease. Figuring that stress was a normal part of life, he never mentioned I might consider learning how to manage it.
So, now I had a specialist I liked and respected. There was just one catch; I was still on the same track. I never traveled out of town without some Prednisone in my pocket. I still worked and played hard, but I backed off a little and was a little more careful about what I ate.
Three years later I had to have emergency surgery. Three and a half feet of my small intestine, including my ileum, were removed. I was taken off all medications. I understood that Crohn’s almost always returns after surgery. I had even read that if it doesn’t come back, it wasn’t really Crohn’s disease. Therefore, I was disappointed, but not surprised when a few weeks later, the diagnosis came back positive. I was put back on Azulfidine.
I was 43 years old and figured I was on track to have surgery every 10 years or so. I joked that if I lost 3 ½ feet each time, I could make it to age 100 before I ran out of small intestine. Still, it didn’t sound all that great, so I decided to try a new approach. First, I gradually began to change my diet. I started going to Wendy’s instead of McDonald’s and Burger King because I could get baked potatoes instead of French fries and the hamburgers were not as greasy. I started observing what I ate and how it affected me. I tried to cut back on greasy food and red meat, eating more chicken. Years later, I decided to do without meat altogether and become a vegetarian. (I shed more light on my dietary research in Chapter 4.)
Changing my lifestyle was a subtle process that took place over a period of several years. I ate a healthier diet and started practicing yoga at home, doing a 15 to 30 minute routine before work.
Before my surgery, I had been attending a weekly yoga class, not because of the philosophical or spiritual aspects, but because I believed my athletic pursuits would be better served if I stretched more. While playing racquetball a few years earlier, I had ruptured my Achilles tendon. The surgical repair had been successful, but I knew I needed to stretch my entire body as well as the repaired tendon. Yoga proved to be much more than a means of increasing my range of motion. Eventually, it became a big part of my Crohn’s management.
Just before I turned 50, my life took another big turn. My sixteen-year marriage was coming to an end. The landscaping business was doing great, but it didn’t provide much satisfaction anymore. I think I thrive on challenges, and although I enjoyed the success, I found the routine stifling. So I sold the business and began the process of developing a new career.
I went to San Francisco, studied yoga for 2 years and became a certified instructor. When I returned to Tennessee, I opened a yoga studio and started to hold classes. Later, I completed a 600-hour course in Tennessee and became a licensed therapeutic massage therapist as well. I wanted to learn all I could about the body and how to make it healthy.
The effect of yoga on my overall health, not just on my Crohn’s disease, was dramatic. My posture greatly improved. Even my bowed legs were less bowed. There is no doubt in my mind that the process of opening up my body with yoga got rid of toxins that were stored there. The process of doing yoga also encourages the mind to be more open to new ideas. The more I studied yoga, the healthier my lifestyle became, especially as it related to diet and stress.
A couple of years after opening my yoga studio, I met Colette, who became my wife. She was a massage therapist, an organic gardener, a great cook and a vegetarian. Not only did she love camping and the outdoors, she had a spirit of adventure. Years earlier, she had overcome some serious health challenges of her own and, like me, had to live a healthy lifestyle. She found the book, Eating Right for a Bad Gut, by Dr. James Scala. It took two readings for its wisdom and knowledge to fully penetrate. Since then it has helped bring my Crohn’s management to another level.
In 2005, Colette and I moved to Southwest Florida. I cut back on yoga but increased my time spent in nature and doing aerobic exercise. Taking fish oils, eating a very healthy diet, and living a healthy lifestyle allowed me to get off of medications.
But then, I got careless. True to my impulsive nature, I thought I could be less mindful and do just as well. Over the next 7 years, I gave up my disciplined, moderate lifestyle. It was a downward spiral that resulted in ever more frequent days when I felt fatigued and unable to do much. I had annual physicals and an excellent general practitioner as my doctor, but I realized that maybe it was time again for a gut specialist.
In June of 2011, I met with a new gastroenterologist. My energy level had been quite low for a couple of months. In retrospect, it had been more off than on for almost a whole year. The doctor prescribed Asacol and told me to come back in 2 weeks, if I was still having problems. At that point, he would probably prescribe my old stand-by, Prednisone.
When I went to see him 2 weeks later, I was amazed and annoyed to learn he was on vacation. Upset, but proactive, I went to my regular doctor and he wrote a prescription for Prednisone. On the recommendation of one of my wife’s friends, I scheduled an appointment with another gastroenterologist. He was great. The first office visit with him lasted 30 minutes, unusual in Florida, where the average time spent with a doctor is less than 7 minutes! After a colonoscopy, digestive tract X-rays, and a couple of rounds of steroids, we settled on Asacol for my maintenance medication. He and his assistant got me back on track, and I’ve been in good shape ever since.
So the question is, has Crohn’s been a gift or a curse in my life? The disease has placed some limits on what I do and what I eat, and it has robbed me of considerable energy. At the same time, it has provided me with many gifts, including humility, greater flexibility in facing daily challenges, and satisfaction in achievements with a “handicap.” I think in many ways I am healthier for it because I had to be more health conscious.
I have become a practitioner of moderation. I run a little, bicycle a bit, do some sailing and camping, engage in socializing, occasionally drink beer or wine, and eat great tasting foods. I practice yoga and meditation. Colette and I limit eating out, not only because it is expensive, but because I often pay the price later on in other ways. Yes, I have had Crohn’s disease for 35 years, and I have to be prudent in what I do, but I live a great life; and I believe many others with Crohn’s can do so, too.
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