Chapter 2 — The Downfall
It took some time for me to make up my mind to see my next doctor, Dr. Kale, because after all, when you get burnt once and then a second time, you become a little leery about the possibility of a third time. However, an appointment was made to see him. That was like going from the frying pan into the fire for the next two years, until the middle of 1964.
So I began all over again with the blood tests and stool samples which gave similar results as the previous tests except these results showed a general worsening. I was feeling very sick the day of the initial examination. There was a fever and colon infection present, which was probably why I was so weak. Being malnourished from inability to properly digest and absorb nutrients from the food was also a contributing factor.
Dr. Kale gave me a rather long and extensive sigmoidoscope examination. It was quite uncomfortable, to say the least, because I was nervous, tense, and the hemorrhoids formed a slight interference to the entry of that cold steel tube.
What does one think about while this tube is pushed deep into the rectum and colon and moved around at different angles for best viewing? I didn't know what others thought, but I'm sure it was similar to mine. I didn't think of pleasant things and I didn't think of unpleasant things. In fact, I had but one thought: "When is he going to take that damn thing out?"
Dr. Kale was quite concerned upon completion of this examination. No, he was more than concerned. He was alarmed. Alarmed that anyone could have allowed me to reach this present stage without having the common sense to have placed me in a hospital. He informed me that not only was I running a high fever but that a massive infection was present in the entire ulcerated large intestine and was spreading. He said, "I want you to go right home and pack a suitcase and get over to the hospital immediately. I'll phone the hospital and inform them to admit you as a medical emergency." The hospital had no openings for admissions, but the medical emergency had priority. It was one of the few times in my sick life I had "status."
Upon admission I was put to bed and antibiotics were administered for the infection, and aspirin for the fever. The body is trying to eliminate something through a fever. It is part of a remedial process and should not be suppressed by aspirin. Many times, suppression of a fever will result in some unhealthy manifestation elsewhere in the body. Also, the ingestion of aspirin has been proven to cause pinpoint bleeding and even ulcers of the lining of the digestive tract. So why was it given to me? Was that logical? I must attribute my increased bleeding; during the first few days in the hospital, to the always dangerous aspirin. I consider myself most fortunate the ulcers in my colon did not perforate into the abdominal cavity and cause my demise.
My food was called a low-residue, high-protein diet, which is supposed to build the body and yet not leave too much bulk after digestion to irritate the colon. Most of the food was cooked and pureed, leaving it nutritionally wanting, but this is all I could handle. Put a healthy person on a diet of only cooked foods and eventually his health will deteriorate into disease.
I was advised to have double orders at each meal, if it was desired. That meant double steaks, eggs, hamburgers, chops, chicken, and bacon. Also included in this menu were milk, white bread, coffee, cereals, salt, white sugar, etc. For one thing, as mentioned previously, a sick body does not have the ability for normal digestion and becomes weaker from expending energy in trying. Meat is not good for the body, but is much worse for a diseased intestine. Bacon and eggs are too difficult to digest. Milk generates mucus and creates allergic manifestations. White bread, cereals, and white sugar are highly chemicalized foodless foods and are responsible for many diseases. Salt (table salt, as it is known) is a powerful irritant and has no place in the human body. You know what happens when salt is put on a cut; well can you imagine what it does to a person who has ulcerative colitis. Coffee is a diuretic and stimulant which also has no place in the human body, much less a sick one, and coffee elevates the fatty acid level of the blood while it can also trigger a low blood sugar (hypoglycemic) reaction. I'll try to cover the important aspect of diet in another chapter.
A varied regimen of drugs was instituted during the first week in the hospital. Treatment was always a hit and miss affair, going from one drug or modality to the next and always seeking, always hoping, but never finding. I was going to spend five long weeks in the hospital.
Five weeks away from my family and from my practice, which was already suffering. Five weeks filled with hope--but it was false hope.
Megavitamin therapy began along with a battery of potentially dangerous drugs. There was Sulfasuxidine for infection, Crystalline B-12 injections to combat the anemia, Codeine for pain, Librium for tranquilization, Plaquenil (an anti-inflammatory and antiparasitic agent), Sorboquel to inhibit motility in the intestinal tract, and Maalox for the ever-present indigestion and upset stomach due to ingestion of all these drugs and inability to handle the volume of food.
There were ups and downs the first two weeks, but nothing to indicate any general improvement was forthcoming. Diarrhea was increasing to between 12 and 20 times per day, much of it being just intestinal spasm and bleeding. This, coupled with the poisonous effects of the drugs (nausea, indigestion, blurred and double vision, dizziness, headache, dryness of mouth, and rapid heartbeat), sent me into deep depression, fear, anxiety, and other psychological hang-ups. I was becoming old at 32 years of age and had not enjoyed life for the last four years, at a time when I should have been planning for the future. Instead, the outlook was bleak. I could only foresee a futile struggle to exist--my wife having to work to support us, my physical and now psychological debility worsening until I became a complete invalid (if I lived that long), and a deteriorating family life.
It was at this point in my hospitalization that Dr. Kale began the use of steroids--the cortisone family of drugs. I had already taken small doses for a short time, as mentioned earlier. Thus began probably the most dangerous phase of my treatment with these hormones, the reasons becoming evident, as you will soon learn. Massive doses were given to me by injection and within a few days I began to feel better. The intestinal spasms and diarrhea became less frequent. The migrating joint pains, which can be common in advanced ulcerative colitis, subsided. I began to feel "on top of the world," but these were false feelings of euphoria brought about by the action of the hormones. My appetite was stimulated abnormally and I was able to eat unlimited amounts of food, which was harmful to an already weakened digestive system. I began to put on some weight, but it was a dangerous and unhealthy weight, as will be seen. The severe inflammation throughout the intestinal tract subsided, or so it seemed. But what occurred was a blocking of the body's mechanism to relay the normal inflammatory response, thereby giving the impression of improvement when in reality the inflammatory process was still going on, although I was not aware of it. In other words, while I was feeling marvelous and beginning to "live" again, I was actually dying inside. A very deceptive masking of symptoms was taking place. It was this symptom treatment, or masking of symptoms, that formed the basis for all my medical treatment.
After about a week of these injections, they were discontinued and replaced with tablets called prednisolone (similar to the hormone prednisone I took with Dr. Leopold three years before), which I took in very large doses. I was still taking the other previously mentioned drugs with the addition now of Ananase, which is used as an anti-inflammatory and also reduces swellings.
One of the dangers of taking steroids (prednisolone, etc.) is the delay of wound healing or the opening up of old sores. So you can see the problem I was up against. I was damn lucky the ulcerated colon didn't break down and allow me to hemorrhage to death. With this potential danger, I could not understand the rationale for using this drug.
The final two weeks in the hospital were spent trying to rest, adjusting drug dosages, taking blood tests and lower GI (barium enema) tests, and of course being on the receiving end of the always-cold steel tube (the sigmoidoscope ) .
It was sometimes difficult to break the monotony of the five weeks in the hospital, but I read and made friends with many patients on my floor, played chess with some, and even took daily wheelchair rides up and down the hall while pushed by one of my new-found friends. To make the ride even more interesting, I took along my remote control switch from my hospital television set and as we passed each room I activated the switch which changed channels in each room. I could hear various patients trying to get their channels back by cussing and by clicking their remote control units as I went up and down the corridor changing channels. No one ever discovered what happened, but I knew the mystery broke their monotony. Kind of a ridiculous thing to do, but I guess I was getting a little "stir" crazy. These corridor rides were frowned upon by the nursing staff, which put a quick end to an otherwise pleasant daily occurrence.
I recall several other incidents that I look back on now as humorous. It seemed that whenever my hospital roommate would be in the lavatory either shaving or "relieving" himself, that was the time I got the "urge."
When I got that urge I had to move fast or it was too late. After all, I was having from 12 to 20 B.M.s a day. There were many times I had to get him out fast with his pants down. Can you visualize me running in and him running out at top speed and making this quick exchange without bumping each other as we passed through the doorway? Anyone watching would have wondered what the hell was going on.
This particular roommate was to have a sigmoidoscope examination performed in a few days and he was petrified and built up a fear bordering almost on hysteria. He knew I had gone through that test dozens of times and he respected me as an expert. He asked me to give him pointers on how to cope with this cold steel tube. After all, I did know the secrets of these rear-end matters. So I proceeded to coach him in the art of proper mental, physical, and hind-end relaxation. This is the secret of it all. So there we would be, the coach and the student going through the training sessions with him carrying out my instructions. What would the neighbors think if they had overheard the conversation? The day came for him to undergo the sigmoidoscope. He was shaking as he was wheeled out of the room, but I reminded him again to follow my instructions. An hour or two later he was brought back to the room. He was all smiles. He approached me, shook my hand, and thanked me. He said if it wasn't for me, he could never have done it. A simple thing, yes, but it made my day.
Then there were times (it occurred twice) my medicine was brought in while the nurse stood by to make sure it was swallowed. I glanced at the pills and said to the nurse, "These aren't mine." She answered, "These are your pills. I prepared them myself. Your doctor ordered them so please take them." I knew what my pills looked like and these were totally unfamiliar, so I refused to take them until she checked with my doctor. The nurse left the room and was back in five minutes with an apology. "Those pills were for the patient in the next room. Here are yours." Do you know what might have happened if I had not known the difference and swallowed them? They could have killed me. I've often thought of that incident over the years, because it is a common occurrence that takes place every day.
There was a rather pathetic incident I experienced before being discharged. There was an 11-year-old boy across the hall who had such an advanced case of ulcerative colitis that he had to be fed intravenously 24 hours a day. He looked so small, so frail, and so frightened. I tried to spend a little time with him each day, but I could see he was growing weaker. He was wasting away to skin and bones and his doctors recommended a total colectomy--a complete cutting out of the large bowel, with a bag provided to collect the waste matter from a permanent opening in the abdomen. This is one of the most drastic types of surgery. I couldn't see how that shell of a boy, who was listed as critical, would survive whether he had the surgery or not. After leaving the hospital, I tried to get him out of my mind and could not. However, I did not keep in touch. I guess, subconsciously, I was afraid for him and for myself: "There, but for the grace of God, go I." My assumption was that he didn't make it. I almost hoped, for his sake, he did not.
At the end of five weeks, Dr. Kale decided to discharge me. He said, "I'm pleased with your progress." I eagerly awaited news of the medication I had been taking, one of which was the hormone drug prednisolone which I was to take in rather large doses for an indefinite period of time, with eventual hopes of reducing the dosage until the drug was stopped. This tapering was to avoid some very damaging and dangerous changes that could take place in my body. I was also instructed to call Dr. Kale in about two weeks to resume regular treatments, which were to be at approximately two-week intervals.
For the next month or two there seemed to be some improvement, or more accurately, a slight remission. There was never really improvement. But I went along, taking my medication and hoping that my bouts With diarrhea, which had decreased to about six to ten times a day, would eventually return to normal and also hoping I would feel better generally.
With this seemingly slight improvement these few months, I became somewhat optimistic and elated. But my elation was short lived because soon the diarrhea increased to about 15 times a day; weight loss was apparent and I was becoming dehydrated from the loss of fluid. I was beginning to run a low-grade fever. Some of my drugs were discontinued and replaced by others, such as tincture of opium for diarrhea (which affected my equilibrium and thinking), Sulfaguanidine for some type of effect on the intestine and bacteria, and Chloroquine for who knows what or why--although it has been used in malaria.
The combination of all the medicines was playing havoc with my stomach, the worst effect being indigestion--severe indigestion. Contributing to this was the hormone prednisolone which I had been taking in rather high doses for a number of months. This drug causes an increase in hydrochloric acid in the stomach. So to counteract these effects, another drug called Gelusil was given. Is it any wonder why normal digestion could not take place even if the ability was there?
The symptoms of drug poisoning were beginning to make themselves evident again: dry mouth, nausea, dizziness, blurred and double vision, fluctuations in mood from deep depression to extreme euphoria, blood cell changes, blood pressure deviations, palpitations of the heart, occasional hot flashes, etc. The double vision made it extremely difficult and frustrating for me to do my surgical work, which was, many times, confined to very small areas on the foot.
As the diarrhea increased, there was more weight loss. There was also loss of minerals, particularly calcium, which contributed to muscle cramps. For this I was given calcium gluconate, which helped somewhat. Dehydration was always a problem and I could feel myself getting weaker. I was drinking large amounts of water.
When the dose of prednisolone was gradually lowered, with eventual complete eradication always in mind, there would be exacerbations to such a degree as to necessitate increasing the dose again. I had been taking these hormones for several years, and very subtle changes, dangerous changes, were taking place in my body. Weight gain was one of them. I had dropped down to about 155 pounds, but now I was noticing an increase. I thought perhaps I was on the road to health. That made me quite happy and optimistic. With this weight gain I experienced alteration in heart rhythm and severe muscle spasms and cramps in my arms and particularly my legs. This was beginning to occur with greater regularity and often with such intensity as to cause my legs to contract and double up. I could not straighten them and I could not tolerate the pain. It would happen. anytime and anywhere.
The longer one takes these steroids or hormones, the greater is the threat to life and risk of death, under certain conditions. I was becoming a victim of steroid poisoning. The weight gain was an unhealthy gain due to sodium retention, and we know that sodium holds water. There was also a potassium depletion which was responsible for the severe muscle spasms and irregular heart rhythm. For this I was given potassium chloride pills to try to replenish my potassium reserves.
Other signs of this poisoning were moon-face, buffalo hump, and general bloating. The moon-face is a severe rounding and puffiness, which changed my appearance to the degree that many people I knew could not recog-nize me. The buffalo hump was deposits of water and fat along the back of the neck. This made me look even more distorted, as did the general body puffiness and swelling. Eventually I reached a weight of 190 pounds. My maximum weight had never been over 170 pounds. I dreaded shaving in the morning because I knew I had to face that monster in the mirror.
This situation continued for a number of months. Right along with it was the continual indigestion which many times kept me awake all night. But it was not just the stomach or colon that was involved. It was the entire body that was now sick; the small intestine, the liver, and other general bodily functions were suffering. What is sometimes overlooked is the fact that the body is one unit. One cannot isolate a part and say this is the sick portion. When a part is diseased or ails in some way, the body is sick and suffers as a unit, even though it is always trying to maintain a balance.
The liver gave me quite a problem. There was always much tenderness in that area. After all, this organ was being taxed beyond its call of duty. One of its many functions is to detoxify poisons in the body. I was loaded with poisons and there was a constant level of these drugs in the blood over the six years of medical treatment. I feel damn lucky I didn't develop cirrhosis of the liver just as an alcoholic might. Just to make sure, Dr. Kale sent me to the hospital for liver function and gall bladder tests. That meant more castor oil, enemas, and drugs--an additional burden to an already enervated, depleted body.
After a number of months, Dr. Kale became quite concerned of potentially dangerous changes occurring and decided to gradually, but very gradually, reduce my steroid dosage. When one has been on steroids as long as I had, and at my dose level, it becomes critically important that this reduction in dose be accomplished over a fairly long period of time. Why? So that the possibility of my dying from shock can be prevented. After all, I've come so far, why expire now!
I feel it important to briefly explain the rationale of this most delicate phase of steroid reduction. One of the secretions of the pituitary gland in the brain is ACTH (adrenocorticotropic hormone). This mobilizes cortisone from the adrenal cortex (a gland lying on each kidney) which is important in carbohydrate and protein metabolism and also in inhibiting ACTH, where each acts as a check and balance system. Another important function of the cortisone is in stress or emergency situations, as I mentioned above. The adrenal cortex also secretes sex hormones.
Now, when this steroid is taken into the body from an outside source over a period of time, the adrenal cortex does not have to produce it, so it becomes smaller and we have what is known as adrenal cortex atrophy. Obliteration of this adrenal cortex can result in death. If at this point of atrophy the exogenous source of the steroid is abruptly stopped, then a most critical situation exists. If a stress or emergency situation should arise--surgery is considered a stress situation--then death can occur from the resultant shock and low blood pressure unless the body receives the hormone from an outside source, giving the body what it cannot obtain from the adrenal cortex.
This was not meant to be a treatise on the subject, but just an awakening for you; to make you aware of the tremendous importance of gradual reduction of steroid dosage so that the gland will "come back" and again begin to produce on its own until it can function normally again when the exogenous source is completely stopped. You see, there are thousands of people like myself who have been in this situation and it behooves us to understand what happens to our precious bodies. I'll tie this in, later on, with an incident that happened to me while I had adrenal cortex atrophy.
My daily intake of prednisolone had reached a peak of 40 milligrams--eight five-milligram tablets--which is quite high. The tapering down was something like one-half tablet every five days to a week. It was a very slow process, but my grotesque size and weight were gradually returning to normal. But as the drug dosage was reduced to several tablets a day, the intestinal spasms increased as did the diarrhea.
I was "running" up to twenty times a day. The other drugs I was taking were not doing much good regardless of how the dosages were manipulated. Dr. Kale did not want to increase the steroid dosage, so he added another drug to my collection called hydeltrasol--a liquid steroid that I was to dilute in water, suck up into a bulb syringe, and administer by rectum. In this way only the colon area was exposed to the steroid, and we would not have to worry too much about systemic effects. Anyway, I couldn't hold it in long enough to do much good or bad. With so much back-end involvement, some of my friends began calling me the "rear admiral." Not much was funny to me at that time, though.
This method did seem to help to a degree, but it was only symptomatic treatment which was not lasting. The double vision from the other drugs was getting worse, making it extremely difficult for me to perform foot surgery and other intricacies of my profession of podiatry. In fact, it was becoming more difficult to participate in the normal activities of day-to-day living. My life now was completely revolving around my problems almost to the exclusion of anything else. Whenever my wife and I would go anywhere, my first objective was to locate the lavatory and stay within close range. I was living in constant fear and under heavy stress because of never knowing when or where or how fast the "urge" would strike. I didn't live from week to week, day to day, hour to hour or even minute to minute. I lived from second to second.