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I was gripped with a sickening fear as I suddenly realized I was dying. What does one do when the doctor pronounces the sentence? What does one say? How does one react?
It was early in 1964. I was 34 years old. I had a lovely wife, two fine children, a good practice as a podiatrist and foot surgeon and was a member of recognized state and national accredited groups of my profession; but I was a damned sick man!
I had run the medical gamut of treatment and by all medical standards there wasn't much hope. I had reached my physiologic limitation as a result of ulcerative colitis, a severe and debilitating disease of the colon or large intestine, marked by severe diarrhea, intestinal spasm, bleeding, dehydration, weakness, weight loss, and a host of other symptoms. It is one of the chronic digestive diseases, which, according to the National Center for Health Statistics, are the number one cause of hospitalization and rank second as the cause of disability due to illness. The cost of these ailments is estimated at $10 billion annually, making them the leading cause of economic loss from chronic human illness. About 100,000 new cases are diagnosed each year. Ulcerative colitis is a pre-cancerous state, and it was at this point the doctor granted me two choices--namely, that if nothing was done I would die, or a drastic operation could be tried, a total colectomy (complete removal of the five or six feet of large intestine and rectum), with a bag being attached to the abdomen for the collection and elimination of waste matter (ileostomy), which would have made me a permanent physiologic cripple, and of course could not guarantee my survival. So how does one react when there isn't much hope? I reacted with a calmness, with a feeling bordering on apathy. I almost didn't care. I thought perhaps it was for the better because soon it would be all over. Soon it would end. No more suffering. Eternal peace. But I didn't realize that I was destined to make a decision that was to change the course of my entire life, the lives of my wife and children, and the lives of thousands of people with whom I would cross paths. I was going to hang on to precious life. I was going to defy all the doctors. I was not aware of it at the time, but I was, in a sense, going to be reborn. I had a mission in life!
We have to go back to 1958. I was 28 years old, separated from the army for four years after serving in Korea during the Korean war, had been in private practice only three and one-half years and was trying to make a new start with my wife of two years. It was at this time that it all began--an occurrence which was to become a nightmare and make my life a living hell for the next six years.
My wife, Corinne, and I were relaxing one evening after supper, when suddenly and without warning came a feeling of pressure and discomfort in my lower abdomen, accompanied by strong urge to have a B.M. (bowel movement; the letters "B.M." will be used throughout this story). It happened so fast, there was no time to reach the lavatory and I found myself sitting in a small pool of blood, the sight of which worried and frightened me.
After the initial shock wore off, I decided to do nothing for the present. After all, I didn't seem to have any other particular health problems; my diet was the normal run of-the-mill American type that lacks nutrition (doesn't everyone enjoy a package of cookies and a quart of milk as a meal, with a candy bar or two for dessert?); and of course I was a worrier, a pessimist, and a perfectionist with an emotional inability to cope with stressful situations--but then don't we all have these "normal" hang-ups? Normal? I wonder now, as I'm writing this and looking back.
Anyway, I waited three weeks before I worked up enough nerve to see a doctor. During that time, diarrhea developed, accompanied by bleeding and intestinal spasm. This frightened me enough to seek out a doctor who came highly recommended (his real name will not be used for personal reasons, as will not the other doctors who "cared" for me, with the exception of the doctor who finally led me out of the darkness, Dr. Robert Gross).
The initial examination consisted of the usual history taking, blood and urine tests, and physical examination. These things being concluded, I was ushered into a room and told to "hop up" on the table, drop my trousers, and bend over. Dr. Leopold informed me he was going to insert a stainless steel tube up my rectum to visually examine part of the colon (large intestine). I took one look at that instrument, which looked to me like a short stainless steel broomhandle, and asked how he was going to get that thing into me. He said, "Just relax and bear down." But I had built up such a fear and anticipation that it was impossible to relax, and when that cold steel tube (why are doctors' instruments always cold?) touched my sensitive parts and I tightened up every muscle in my body, I knew there was no way he was going to pass that tube into me. He pushed and I sweated. The more he pushed, the more I tightened until finally he gave up and referred me to Dr. Price, an expert in conducting this type of examination. Did he get that instrument into me? You can bet on it! It was probably one of the most enervating experiences I had had to date, and it was to be the first of dozens of this kind of examination over the next six years. However, Dr. Price taught me how to relax during this procedure, which is called a proctosigmoidoscopy, and soon I became an old pro at it, which was to make it easier on me in the years to come.
The diagnosis had been made--ulcerative colitis. A horrible name for a horrible disease. In fact, one of the most debilitating afflictions of man.
Treatment began. If only I knew then what I know now, the agony of the next six years could have been prevented--the agony of a physical, emotional, and spiritual deterioration. Part of the treatment was to find a cause, so blood samples were drawn, urine samples were taken, and I was given a dozen or so small boxes in which to deposit stool samples each week for analysis. Everyone was looking for a germ of some type which was assumed to be causing the disease. None were found, for rarely, if ever, will they be isolated at the beginning of disease because contrary to popular belief--and this may stun you a little--germs are not generally a primary cause of disease. They are ubiquitous and ever present and we cannot rule them out, but their role is secondary. They will grow and thrive in a medium conducive to their propagation, and that medium is an unhealthy body, an enervated body, which mine eventually became. Germs generally won't grow in a vitally healthy body, a body properly nourished and having the highest degree of resistance and immunity, a body that is functioning as it should. After all, what is health? It is merely a state where the body's 25 or 30 quadrillion cells (give or take a few) are all doing their job. I'll go into this later.
Much of the treatment was based on the destruction of germs whether they were present or not. Another aspect of treatment is the assumption that those with ulcerative colitis are supposed to have varying degrees of emotional problems. This is far from always being true. In fact, it is a sick body that usually causes depression and emotional problems as a secondary manifestation.
At this point I was started on drugs, and for the next six years I was to take some forty different types, sometimes gulping down combinations of half a dozen varieties, which when mixed together in my bloodstream caused reactions and crises that made the ulcerative colitis look like child's play. The drugs first prescribed were Azulfidine, for some type of effect on the intestinal tissues; Theragran, a multiple vitamin to replace those lost from diarrhea and the body's inability to absorb the nutrients from food; Pro-Banthine, to dry up secretions such as the fluidity from diarrhea; Trasentine, to relax spasm in the intestinal musculature; Metamucil, to absorb water from the intestines and create a form of soft bulk; and Erythromycin, an antibiotic for an infection that hadn't yet occurred.
Diet was of course regimented. A low-residue type was instituted that avoids roughage, which irritates the large intestine. No raw fruits, vegetables, or nuts. Instead, I used mostly cooked, canned, and pureed foods along with certain meats. This is what I call a diet of foodless foods. Later on you will learn why this type of diet cannot maintain health, much less help recover health. You will also come to understand why drugs do not cause one to get well and that if one recovers health while taking medication, he usually gets well in spite of, not because of, the medicines.
After a number of months my condition grew steadily worse, not so much bleeding now but more diarrhea, intestinal spasm and pain, dehydration, and some weight loss. It was at this point Dr. Leopold decided to hospitalize me. I was there for two weeks, during which time I was given the low-residue and high-protein diet. There were some new drugs administered: Robanul, to hope-fully reduce fluid content of B.M.s; Lomotil, to reduce intestinal motility; Sulfathalidine, for further extermination of the non-existent germs; Belladenal, to sort of calm everything down; penicillin, for what was called infection; and Amphojel, to combat the stomach upset and indigestion caused by the other drugs. I was also started on one of the most dangerous. of all drugs--prednisone (part of the cortisone family). This is a great masker and suppressor of symptoms while the disease, almost unknown to the patient, worsens. (I'll discuss in more detail later, as I take more and more of these steroid drugs,why they are so dangerous to life.) But what did me the most good was the bed rest.
This was my first experience in being hospitalized and it left a rather bad impression on me after the following occurrence. My hospital roommate was operated on for gallstones. He was quite seriously ill due to cirrhosis of the liver, and the surgery was quite involved. Soon his drain was pulled out, but it was too soon, so he drained internally until he was taken back to the operating room for more surgery. He returned to the room unconscious and with an intravenous feeding tube attached to his arm while a nurse adjusted the flow from the bottle to what was supposed to be the proper drip. But it was much too fast for safety so I rang for the nurse, since he was sedated. When she didn't show, I got out of bed and adjusted it for him. When the bottle was empty, a new one was attached and a new needle inserted into his vein. But it was, by mistake, inserted into his arm muscle. I noticed, as time went by, his arm was almost as big as a football.
I rang for the nurse. She didn't come. So I got out of bed, pulled the needle out, applied a tourniquet and inserted the needle into the vein where it belonged. No one ever knew.
While I was hospitalized, I underwent the usual blood and urine tests, stool analyses, and proctosigmoidoscope exams. But now I was to undergo another diagnostic procedure known in the trade as the upper and lower GI (gastro-intestinal) series. This test is done on two separate days. One day is devoted to the upper, where a glass or two of barium meal is swallowed while standing behind a fluoroscope screen as the radiologist watches the substance passing through the upper digestive system outlining the stomach and upper intestines and showing any discrepancies in the anatomy. No abnormalities appeared during this phase of the examination. The next day I was given the second half of the series called the lower GI or barium enema. This is preceded, as was the upper GI, by taking castor oil and taking an enema the night before. Do you have any idea what happens when, in suffering from intestinal spasm and diarrhea, you swallow castor oil and take an enema? Let's for the sake of brevity, call it an intestinal explosion. The lower GI phase now takes place, which is the infusion of barium by enema, enough to fill all six feet of the large intestine. I was instructed to "hold it all in" while being turned in various positions for fluoroscopy and x-ray studies. If I were to make a short list of the most difficult things I have had to cope with in life, trying to hold in that barium while the diseased intestine was going into spasmodic contraction to force it out would rank high on that list. The physical, mental, and emotional battle that went on during this examination left me totally weakened and exhausted for two days, which further aggravated my condition.
The results of the lower GI examination showed conclusively the presence of ulcerative colitis. The colon exhibited the.typical stovepipe appearance, the loss of haustrations (saculations), and resembled a narrow, straight tube. Ulcerations of the intestinal lining were apparent, as were a few polyps (small outgrowths that can become cancerous) which were fortunately able to be snipped out through a subsequent sigmoidoscope procedure.
After the two weeks in the hospital, there was some improvement, but we must remember that when one is young enough and the disease is in its early stages, there is periodic improvement coupled with periodic flare-ups, until eventually there are more flare-ups than improvements and the disease becomes chronic and crippling. This is why colitis or ulcerative colitis is termed a disease of remissions and exacerbations, and medical treatment is symptomatic treatment. The body is poisoned with drugs. Causes are not removed and the body is never left alone, never given the proper environment to heal itself. Remember that healing is not an art but a biological process that takes place from within the body and nothing from the outside will heal. The body, through its innate power, constantly strives at all costs to maintain homeostasis (balance of all body functions in spite of anything that tends to disturb these functions). Therefore, the more interference with bodily function, the quicker is the approach of the chronic debilitating and crippling diseases of man.
Now came a period of apparent improvement. There were ups and downs through the balance of 1958 and into 1959 and 1960, and in my mind I thought soon the disease would abate. How wrong I was! It was a pseudo improvement--the calm before the storm.
I was seeing Dr. Leopold regularly every few weeks. Minor dietary changes were made at intervals, but I was still in the realm of "baby food." The doses of the many drugs were adjusted from time to time--sometimes lowered, sometimes increased--but I continued to take them to maintain a constant level of these drugs in my blood.
There was, so far, a modicum of normalcy in my family, professional, and social life. The disease had not created that debility as yet. I still exercised a fairly decent control and probably was "running" anywhere from two to six times per day. Of course, when I had the "urge" it had to be heeded and this began to bother me a little psychologically. I didn't know it at this point, but the disease was to become a veritable curse.
I recall an incident one night in the winter of 1960. I awoke suddenly. A wave of fear came over me. My heart was skipping beats and pounding erratically. It felt as though it would come through my chest. I became light-headed and found myself gasping for breath. I fought hard to avoid unconsciousness. Could this be the end? Is this the way it feels? There was no pain. It was about 3:00 a.m. and I seemed to remember stories of people I had known who had heart attacks. They always experienced them about 2:00 a.m. or 3:00 a.m. As my fear increased, I decided to call my doctor. I apologized for waking him and told him what was happening. He instructed me to call a cab and get right over to the hospital.
"Don't even take time to get dressed," he ordered.
"I'll call the hospital and tell them you're on your way and they'll have everything ready, so don't worry," he added.
"Don't worry?" I laughed to myself. How does one not worry about something like this?
The cab driver was at the door. I told him I'd be right out. I said goodbye to my wife. She couldn't go with me since things had happened so fast and there was no way to have someone stay with our infant son. Corinne was calm. She had an intuition (and her intuitions turned out to be right over the years) that I was not having a heart attack, and that, at least, made it a little easier for me as I walked out the door.
It was a bitter cold night and snow was falling. A hell of a night to go out in pajamas and bathrobe, I thought, as the cab started up. We were speeding, but time dragged and it seemed we would never get to the hospital. Once there, I was led to a reception area where after some fifteen minutes wait (this seems typical in emergency situations) I insisted on someone doing something. No sooner said than done. I was ushered into another room resembling a business office where I came face to face, across a desk, with an efficient looking woman dressed in white. She coldly inquired as to my type of medical insurance. I got the vibrations that a lengthy interview was forthcoming and I wanted no part of it at that particular time, so I asked to be taken to see a doctor. The lady in white stated she had to have certain information and then I would be able to see the doctor, so she proceeded to obtain my address, profession, phone number, mother's maiden name, religion, and answers to a dozen or so more questions. I almost thought she would ask me why I was there. More precious minutes ticked away and finally the two giant swinging doors opened exposing an orderly who guided me into an examining room and onto a table. At last, I thought, the doctor will see me. Sure enough, about fifteen tension-filled minutes later a very young-looking intern strolled in and asked a battery of questions. He proceeded to examine me and decided to give me an EKG ( electrocardiogram ) ; but guess what? That's right! There was no EKG unit in the room. So out he went to locate one. More nervous minutes passed until he returned with the apparatus. He proceeded to put the jelly on the various parts of my body where the electrodes would be hooked up. After connecting me, he was ready to begin. The machine was plugged in, the switch was thrown, but nothing happened. The intern jiggled the switch and made a few adjustments, but still nothing happened. He went to get help while I became more upset with the entire idea. Finally he returned with a young female intern and between the two of them the EKG unit was finally activated, but they could not get the machine to record on the graph. They played with it for a number of minutes--the blind leading the blind--until finally I could not contain myself any longer and got up and showed them how to work it, then I put myself back on the table while they made the test. The results were negative. No evidence of any heart problem. Everything was normal. But after a careful history was taken, it was determined that the entire episode was due to the effects of all the various drugs in my system, each one potentiating the action of another, interfering with normal body function.
This incident reminded me of the story of the man who, when he regained consciousness in his hospital bed, asked the doctor standing over him what had happened. The doctor told him that all of his tiny time pills went off at once.
The point of this whole experience is the frightening prospect that if I, in fact, was having a heart attack, I could have easily died while running the gamut of hospital-medical red tape and laxity most likely due to "routineness." I'm sure this is not always the case, but I wonder how many people have died "waiting"?
My drug doses were of course reduced and altered on subsequent visits to my doctor, but I was ordered to continue taking drugs. Soon I began to experience some nausea and severe general itching as reactions to these drugs. I was then ordered to take two more drugs. One was Dramamine, which was used for nausea, and the other was Periactin, which was used for the itching. Neither of these did much good and there were many other signs of actual poisoning making themselves manifest, some of which were drying of the mouth and mucous membranes, headaches, blurred vision, nervousness (for which the doctor prescribed phenobarbital), mental slowness, and fuzzy mind--probably due to the phenobarbital. There were other signs, but these will give you some idea of the dangers of drugs. This is known as iatrogenic disease, doctor-induced disease, from the so-called "cure," which is usually worse than the disease. In fact, I consider it a small miracle that my infant son, born in December 1960, and my other son-to-be, who would be born in December 1963, were completely normal and had no genetic damage as a result of my system being loaded with poisonous drugs, including one of the most dangerous--cortisone.
After a few more months of treatment, my condition worsened to a point where I began losing weight. I dropped eight or ten pounds from my average 170 pounds. This was of course due to increased intensity of diarrhea, thereby causing dehydration and loss of nutrients. There was also a decreased capacity to digest and absorb food. There was chronic, low-grade fever present, accompanied by malaise and weakness. As the drugs were continued, they caused an alteration in the normal intestinal flora (beneficial bacteria that produce vitamins and are an integral part in the digestive process), creating more diarrhea, vitamin and mineral deficiency, bleeding with subsequent anemia, putrefaction of bowel contents, and resultant gas formation, etc. All of the preceding problems contributed to what was to be a form of malnutrition--another problem I didn't need.
A sick body needs rest. A body that does not have the power to carry on proper digestion needs rest. A body that is weak needs rest. Rest was one necessity that was not supplied. My body was too busy working trying to digest food and detoxifying or making harmless the many drugs being poured into it. How could the body possibly heal itself under these circumstances? The factors necessary to maintain and restore health were never supplied. You will become very aware, later on, of the nature of these factors. The sad part was that I was allowed to deteriorate as far as I did with none of my doctors being truly aware of the conditions necessary for health. From here on it becomes a veritable nightmare.
After two and one-half years Dr. Leopold finally gave up. He referred me to Dr. Evans, early in 1961, who was rated as a "big specialist" with a broader knowledge and experience in treating ulcerative colitis. So I began all over again with blood tests and stool samples, which showed a type of anemia (low hemoglobin in my red blood cells), and the upper GI series and barium enema, which showed worsening changes--and which made me sicker afterward.
After all the above tests were completed, Dr. Evans had me come into his office for a proctosigmoidoscope to "see what's going on in there." He was quite concerned with what he saw internally as well as my generally run-down external appearance and decided I needed some additional drugs. So he started me on Donnatal to quiet things down inside; Combex with C, a multivitamin; Betalin-S injections, a B vitamin which was supposed to give me an appetite; Equanil, a tranquilizer; Haldrone, a member of the cortisone family; and calcium carbonate, to combat the indigestion and stomach upset caused by these other drugs. Of course he cut out most of the drugs that had been prescribed by Dr. Leopold.
My diet was now rearranged. Dr. Evans allowed me the similar mushy foodless foods, but in addition he advised a very high protein consumption. This consisted of much eggs, milk, meat, and whole wheat bread, which are notorious allergens to many people. A weakened digestive system cannot possibly handle this type of food without having it ferment, rot, and further poison the body. So what happens when a person with ulcerative colitis ingests these? Severe reactions occur such as increased intestinal spasm and diarrhea, mucous formation, and much gas from putrefaction of these foods. I was also allowed coffee, which is a stimulant to the intestinal tract, and I needed that like a proverbial hole in the head.
You can see the inconsistency in medical treatment thus far, which continues as time goes on. Harmlessness should be the watchword, but it was the exception rather than the rule. I saw Dr. Evans approximately once a week for the year of 1961. I was 31 years old but felt twice my age and almost looked it. The proctosigmoidoscopy was done twice at each office visit and was becoming a most uncomfortable and enervating procedure now because diarrhea was increasing to about 12 to 15 times a day, the rectal area was becoming extremely sore, and painful hemorrhoids were developing due to the constant spasms from the diarrhea. This meant it was difficult for the doctor to push that scope past the hemorrhoids.
I could feel myself beginning to crack emotionally. There were periods of apathy and deep depressions accompanied by nervousness and irritability, making it most difficult for my wife to cope with me. In fact, the strain was beginning to show in her. She felt so helpless to do anything for me. She could only watch the gradual wasting away of a once happy and healthy human being.
Since the hemorrhoids were becoming quite painful, Dr. Evans decided to use injection therapy to destroy them. This is a treatment, or should I say torture, where a needle is thrust directly into the hemorrhoids to be destroyed while a strong drug is deposited therein. I thought I had experienced pain before in my life, but this was the ultimate thus far. This I thought was the acme of pain--but I was wrong. I didn't know it then, thank God, but there was still worse to come in the near future.
My fever seemed to be more severe at various intervals. It was becoming increasingly difficult for me to maintain my podiatry practice, to maintain a social life, and even a family life. But I remained with Dr. Evans for another few months until early in 1962. He didn't seem concerned I was running an almost constant fever, that there was infection in the colon area, and that I was becoming weaker and more debilitated. He just went on seeing me once or twice per week and "scoping" me twice at each office visit until I became so abused physically that I could no longer tolerate being under his care. When he began using ultraviolet light tubes by inserting them into the rectum and up the colon, I decided enough is enough and quit.
Being without a doctor was somewhat frightening, but then being with one was also frightening. So where do I go from here? Should I take my chances and try living from day to day without medical help? Or should I seek. out another doctor, even though I had built up a fear of them, who might be able to come up with some sort of miracle? I really did not know what to do until some friends of ours, who knew how sick I was, recommended I my third doctor-to-be. He had the reputation of being the "best," but he was also the straw that broke the camel's back--he was my downfall.
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