You Have a Disease - Go To Jail
...or at least be arrested, humiliated, disgraced, sentenced and fined.
How It All Started
Hi. My name is Steve Rank. I was born in January of 1963 in Fort Wayne, IN. I am 46 years old and led a relatively healthy life until the summer of 1993.
I was working as the Assistant Program Master aboard the schooner Bill of Rights with juvenile delinquents. This was a sail-training and treatment program for troubled youth. I sailed with the youth and staff up and down the eastern seaboard and in the Gulf of Mexico.
The first I noticed any signs and symptoms of a problem when our ship was in St. Petersburg, FL. I was on time-off in a hotel room after eating an excellent dinner and laid down on my hotel room bed & fell asleep. I awakened feeling very nauseated and had a horrible cramp in my gut. The staff teacher who was also sharing a room with me told me I had been moaning in my sleep. I told her I felt like I was going to be sick.
I went to the bathroom and began to throw up. Not your normal puking, but an earth shattering purge. Then I realized I had to use the bathroom for a bowel movement at the same time. I sat down on the toilet I had just been using and had a horrible case of...can I say...EXPLOSIVE diarrhea. I then leaned to my left to the bath tub and began puking in that. This dual emptying of my body left me perplexed and weakened.
I went to bed that night and had a very restless sleep while taking trips to the bathroom to empty one end or the other. I kept drinking water to try to keep from puking up bile but I wasn't too successful.
The next day I went back to the ship and told the Program Master I was weak, nauseated and too ill to work. I went to the foc'sle and laid down with a pitcher of water to drink.
After a couple of hours of puking, I realized I needed to go to a hospital. Although I cannot remember the name of the hospital, I had a very nice nurse who looked at me, pinched the back of my hand and told me I was quite dehydrated. With doctor's orders, I was started on an I.V. right away to replenish my fluids. I immediately fell asleep due to the exhaustion from the previous events. When I awakened, I found out the nurse had replaced the first bag of solution and had given me another of bag which was almost finished.
The concern that day was the dehydration...not the cause as there wasn't time. My ship was going to set sail and I had to get back to her or she'd leave port without me. Since my electrolytes were normal, I was released with instructions to follow up with a physician if the symptoms were to reoccur. My ship set sail towards Texas.
For the next couple of months, I would just work on the vessel and suffer in pain. I'd awaken at six a.m. and conduct our morning staff meeting. I'd then eat an egg for breakfast with a glass of milk. I'd then take a nap. Normally, I couldn't eat lunch but after lunchtime I'd take another nap and at dinnertime, I'd eat a grilled cheese sandwich with a glass of milk. Not much nutrition. I was literally starving to death due to malnutrition. Eating any kind of food was VERY painful.
I always had diarrhea and would use the head 8 to 15 times a day. I would have headaches (no pun intended). I had rashes on my legs. My eyes would hurt. I would have extreme heartburn. I had blood in my stool. Any piece of toilet paper felt like sandpaper and hurt to use (but of course I did). All of this while sailing on the ocean, managing a group of 18 troubled adolescents and another dozen staff. Also, I needed to coordinate my program's needs with the marine professionals on board so they could accomplish the sailing mission while working in conjunction with our treatment milieu and logistics. This responsibility was difficult for me to manage being as physically ill as I was but with the strong team I was fortunate to have on board, we managed.
The last straw for me was one evening, I went on leave from the vessel with a couple of other treatment staff and we had dinner at a restaurant. During the meal, our business manager Jackie asked me what was wrong. I asked her why did she think something was wrong. She said "look down". I did and my arms were wrapped around my belly, holding it. I was rocking back-and-forth in the chair. I realized how much pain I was in and that I was giving my abdomen support with my arms. It scared me that I had been in such chronic pain for so long(months) that I finally had become able to completely block it from my mind for short periods of time if it wasn't too bad at that moment. I had been ignoring what my body had been telling me. Everyone else noticed, but I had tried to deny there was a problem.
Our ship finally arrived in Belfast, ME where she was going to be dry docked for several weeks while she was worked on. This was my opportunity to find out what in the world was going on with me!
I went to the Penobscot Bay Medical Center's Emergency Room in Rockland and met with the E.R. doctor. I told him I was a sailor and suffering from severe abdominal pain. He look kind of sideways at me as sailors have been know to travel from port to port and going to hospitals and clinics claiming injury to receive pain medication for their addiction.
I assured the doctor I didn't want any pain killers. I wanted to know what was wrong with me. Thus began the battery of tests. Blood drawn, urine sample, questioning, and physical examination. He had me bring in stool samples (more like soup samples) to see if I was suffering from Giardia. Nope...not that. Too bad, Giardia can be easily treated with prescription medication taken for a relatively short period of time.
I was then referred to a Gastroenterologist. He decided to place me on Donnotal (Phenobarbital) which is a barbiturate. After a short period of time on that medication, I told this doctor that my gut hurt just as much as it did before, but I just didn't care as much. He laughed and said that was the perfect description for someone who didn't need the Donnotal but had an issue with pain.
He then decided we should do an upper GI and small bowel series also known as a Barium Swallow. I knew something was up the day we were doing the test. I was told to eat nothing after midnight until the test was completed. I drank the Barium and a series of X-Rays were taken at regular intervals starting at seven in the morning. After hours of standing then sitting over and over, the doctor came to x-ray and told me to go eat lunch and come back when I was done eating. That is when I knew he found something.
I ate a little bit of food and went back. I had another x-ray taken and then sat down. I was so tired I fell asleep sitting up (not an easy feat for a guy 6'6") and was awakened by the doctor punching me in the arm. He had been unable to awaken me any other way. I was still exhausted.
The doctor took me into a room and showed me my x-ray of my intestines. He pointed to a section and showed me how it had almost completely closed up. That is when I heard the dreaded words "It looks like you have Crohn's Disease".
I had never heard of it before. Crohn's Disease. The doctor started to explain the course of treatment and I stopped him. I said "Doc...I've got 2 questions for you. First, can it be cured?" He said "No". I then asked "will it kill me?". He said "People have died from it but there are a lot of treatments we can try to get you into remission." I then asked what the treatments were. He started to explain them while my head swam with thoughts. I sort of remember what he was saying but I was too busy wondering what this all really meant.
The doctor immediately started me on a relatively high dose of Prednisone and Pentasa. I had my prescription filled at the hospital's pharmacy and then returned to my ship. Before getting on board, I checked my voicemail from a pay phone and was told one of our cadets on board had to call his father immediately.
I went aboard ship, got the cadet and took him to a pay phone to call his dad. While this youth was talking to his father, he began to cry. When the young man was done talking to his father, I got on the phone with the dad and asked him why his son was crying (so I could help deal with the issue while we were out on the ocean). The dad said his son's mother is "in the Mayo Clinic with Crohn's Disease and the doctors believe she is going to die." My body went numb. My mind went blank. Within an hour of being told I had a disease I'd never heard of, I was hearing of a person I knew whose mother may die from that very same disease!
I then hung up the phone and called my parents. My father was a physician and my mother was a nurse. I got them both on the phone and told them I had been diagnosed with Crohn's Disease. My mother's gasp was only overshadowed by my father's silence.
My father went to the medical library at Parkview Memorial Hospital and photocopied articles and papers written about Crohn's Disease for me. He mailed them to me so I could begin to better understand what I was dealing with (know your enemy).
Since that time, I've been prescribed all kinds of medication with adverse effects possible including darkening of skin, diarrhea, headache, loss of appetite, jaundice, skin rash and itching, weakness, joint pain, swelling of lower legs and feet, black, tarry stools, blood in urine or stool, cough or hoarseness, fever or chills, lower back or side pain, painful or difficult urination, coma and death. Gee...half of the side effects are already present with my disease.
How will I know if I'm in a remission if the side effects are as bad or worse than the disease? What am I doing to my liver or other parts of my body by putting these medications along with narcotics such as Darvocet, Percocet, Vicodin and even "harmless" medicines such as aspirin.
Why am I telling you all this? There is so much more to tell but it would fall into the category of "too much information". The embarrassment and humiliation brought on by the disease. The depression. The general malaise this disease causes. What possible reason? One word: COMPASSION.
I am asking for compassion. Not just for me. I'm actually pretty lucky compared to so many other Crohn's Disease survivors - or Cancer , Multiple Sclerosis, and Cerebral Palsy survivors. The list goes on.
There is a medication that has been around and in use for more than 5000 years in which there is no recorded death due to an overdose. Even aspirin can't say this. Please read that again. Aspirin has caused death due to an overdose but marijuana never has. Prior to 1937, pharmaceutical companies produced and sold it for legal medical use here in the United States of America. Why can't I get it legally? Why can't a physician prescribe it for me? Why can't I go to a pharmacy and pick it up along with my narcotic prescriptions?
Why must we be forced to become criminals if we're to receive the valuable medicine which can help us cope day-to-day? Why isn't easing pain and suffering by use of this medication allowed under a medical doctor's supervision?
Please click on Medical Marijuana Quotes to continue.
About Me
Born: January 15, 1963
Height: 6'6"
Weight: Varies from 170 lbs to 245 lbs depending on my current condition
Medical Diagnosis: Crohn's Disease