I thought I was going to die.
I had always been able to "fix" it, whatever it was. Not this time. I surrendered to the fact that my days were numbered and I was only thirty three years old.
However, in hindsight, it is clear that my intestinal nightmare actually served as a rite of passage that saved my life; God's way of bringing me to my knees, forcing me to walk into manhood.
For most of my young adult life, into my late 20's, I lived the life of a Man-child. On one hand, I was always self-sufficient, sometimes working two or even three jobs. On the other hand, I was financially reckless in that I spent too much money on fast food, partying and who-knows what without so much as a thought to saving for the future or paying attention to my credit report. In college, I shared an on-campus, newly-built, solar powered apartment with three student athletes who shared my love of marijuana, house parties and sexual escapades. I was a functional pothead. I worked as a reporter for the student newspaper and wrote stories on Affirmative Action and Environmental Issues by day, and spent my evenings in a pseudo frat house with other guys who focused intently on getting high, drunk and having sex with babes.
Somehow, I graduated (barely) from State, graduated with a BA degree in Journalism--and even worked as an editor and reporter for a Black Newspaper, fighting for social justice for people of color. But even at this point, I was incredibly reckless with respect to my finances and my social life--and the job didn't pay much to begin with. Eventually, poverty set in and I set my sights on the mighty dollar. After years of reporting, editing and even delivering the tabloid to churches and stores on the weekends to make ends meet, I couldn't do it anymore. I decided I had to make more money.
I went on to work in sales for a series of companies, living the life of a bachelor, complete with shallow relationships and a shallower bank account. At one point, I had a gig as an apartment manager which allowed me to stay rent-free while I also worked as an account executive selling cell phones (Motorola--they were huge!) and pagers. I was always "on the verge." On the verge of finding my "soul mate" at the clubs on the weekends; on the verge of kicking my weed habit, of finding my purpose in life, of getting my shit together, etc.
And then BOOM. My life was reduced to obsessing about all things related to the bowel; bloody diarrhea, gastroenteritis, cramps, constant visits to the bathroom, you name it. My hopes and dreams were quickly reduced to basic, simple concepts; sleeping peacefully, for example, without constant visits to the toilet. And the possibility of a medication-free, (steroid-free, especially) existence, seemed as inconceivable as the eradication of the system of apartheid before Nelson Mandela's release from prison.
I quickly made another appointment with my primary doctor who suspected I may have hemorrhoids. He slipped on a glove, probed my anus with one stout finger, and promptly referred me to the Chief physician for a scope. It was then confirmed that part of my colon appeared to be inflamed, and that a specialist, or gastrointerologist (GI) was required. The GI calmly listened to my description of the symptoms--which now included cramping and bloody diarrhea-and diagnosed me with Ulcerative Colitis. It was actually a misdiagnosis. I actually had Crohn's Disease, but it was very commonly misdiagnosed as Irritable Bowel Syndrome or Ulcerative Colitis at the time. Within a span of three, maybe four months, I went from being an active, medication-free, healthy young man with a possible case of hemorrhoids, to someone who was quite dependent on steroid-laced medication to combat the chronic abdominal cramps, bloody diarrhea and nausea.
For the next two and a half years, I waged a cat-n-mouse, dog-eat-dog war with a condition that was, at its best, terribly annoying. At its worst, it was absolutely insidious. For example, a typical day for me started in the morning with at least seven trips to the bathroom during a half hour time span, specifically to defecate bloody diarrhea. This daily exercise, which was always laced with severe bouts of cramping, added a sense of drama to the work week; prompting the question, "Will Greg make it to work on time?" I lived in a constant state of what 1 like to call "the verge." I was always either on the verge of going to the bathroom, or back to the bathroom after leaving it. If I stopped to get gas on the way to work, I was on the verge of using the bathroom of that particular gas station. When I stopped at a fast food restaurant for a quick bite to eat (1 could not take my medication on an empty stomach), I'd pray that I wouldn't have to relieve myself; yet again, before hitting the road for work. And in a broader sense, according to the specialists, I was seriously on the verge of developing colon cancer by the age of 40 had I not opted to have my colon removed.
A subsequent scope revealed that the tip of my colon, nearest the anus, was completely inflamed. My GI recommended more pills, prednisone to be exact, and an anti-inflammatory (Asacol)—about 12 pills a day total. I would have taken 20 or 30 at that point--by mouth—needle—enema, whatever. Let's just make it go away again, please. After all, I've got a life to live, complete with a jog around Lake Merritt, and then a movie date later that evening. I had no idea at the time that my life would soon fall deeply and completely into the sweaty hands of the medical profession.
In December, 1996, I was feeling pretty good about the fact that the prednisone and anti-inflammatories seemed to be alleviating the symptoms. I was working as an outside sales rep for a cellular company, while also serving as a part-time apartment manager. I was paying no rent for a huge one bedroom apartment and my primary occupation allowed me to set my own schedule while cruising around the Bay Area all day long. I was living the life of the typical bachelor—and then the shit literally hit the fan.
I was on my way out to enjoy a beautiful sunny day when a tremendous burning sensation stirred within me—followed by an unbelievable urge to run—and I meat sprint—to the bathroom. What seemed like a gallon of blood and fecal matter spewed from my nether regions. I gaseous all the time. One night I kept passing these explosive farts, without the relief that usually accompanies such an act. I thought I had contracted some form of HIV—I WAS GOING TO DIE SOON.
How, you may ask, did I get Crohn's Disease? How did It get to this point? Did I have a bad diet? What did I do, or not do to get it?
Nothing--I did nothing.
That is the most frustrating, insidious and ridiculous aspect of this disease. Every expert in the medical field informed me over and over again that there was nothing I could have done to prevent the onslaught of this awful purge. It was as if some form of "genetic fate" had finally kicked into gear, and not even psychic ability could have made a bit of difference.
How can you get angry at your own colon? I have tried to find fault with me, somehow; with my diet, or with my lifestyle. But, alas, the criticism is not valid. The general consensus is that there was nothing I could have done to prevent it. Apparently, there are a number of theories about the cause, but none proven. The current leading theory suggests that it is primarily a genetic condition. I was told there was really no cure, except through surgical removal of the colon.
The GI went on to point out other facts, but All I heard was, "NO CURE… SURGICAL...COLOSTOMY BAG... blah, blah, blah." I immediately dismissed surgery as an option because I knew—at my core—that surgery involved pain, suffering, and (gasp!) a COLOSTOMY BAG! A bag that is connected to a tube which is spewing waste directly from your intestines. A bag that you have to "empty," and fold into your clothes, and do other things usually reserved for much older men—men in their 60’s and 70’s. As long as a "bag" was involved, I would not even consider surgery.
Caught between a rock and a hard place...
The answer was clear, right? But...
And then something happened that made the decision easier. My GI called me in for an appointment and informed me that a surgeon (Dr. Schrock, UCSF Medical Center) could perform surgical procedure wherein the colon is removed--but no colostomy bag would be required. He was, at the time, the only known surgeon in the world who had routinely performed the procedure successfully--and he would be arriving from Sweden in order to do so. No bag! After careful deliberation and a talk with my spiritual adviser at the time (MOM), I opted for the surgery.
Had I only known that shortly after the surgery, I would be subjected to constant
nausea; no food or water by mouth, sleep deprivation...
I have lost confidence in the team of doctors in charge of my health. After 13
days without food or water by mouth--I have come to the conclusion that this whole thing
was a mistake--and now I am paying with a degree of suffering I would not have believed
possible.
The doctors do not know why my intestinal tract continues to stay dormant; unable to allow food, liquids, or even air through. It was supposed to take 7 days and it has been thirteen days.
Had I known that this would be my fate; that I would be relegated to an existence
which consists mainly of nausea, monstrous hunger pains-nose gauges (especially
tortuous) and other such atrocities, I would not have opted for it at this time.
I would have put it off and continued to stave off the constant
diarrhea and stomach cramps with the same steroid-laced medication that helped me
to get by for the last two years.
I am constantly nauseous and hungry, simultaneously. How is that possible, you ask?
Hmm, well, let's see--maybe it has something to do with the heavy doses of morphine
I can give to myself with this little black button--or the fact that I can literally
see the sickly, dark green contents of my stomach whooshing from a tube--a clear tube, mind you--out of a hole in my abdomen into a plastic, transparent container five feet away.
A television directly above me spews a hoard of aggressive food commercials--the wonderful smell of bacon and eggs fills the room as yet another roommate is served food by mouth...and I gaze down at my catheter and the staples in my stomach and fight the urge to vomit.
I have what seems to be a stream of roommates ( three, so far, to be exact) who come in--stay two, maybe three days; eat normal solid food and drink various liquids-- and then leave--whilst I am forced to watch, smell and visualize... but take nothing by mouth. It is literally a form of torture. I am 61" and weighed about 175 pounds when I came into this place- I am now down to 149, and dropping fast. The word, "anorexic,' comes to mind as I study my reflection. For 13 days I have not shaven or taken a long hot shower or bath. I think to myself, "What did I do in some past life to deserve this?"
Here are a few things to brace yourself for after surgery:
*Sleep interruption-- Not only will you be awakened at least once during the night (at approx. 3 am) to have your vital signs checked, but there are lots of hospital noises (i.e., the IV machine beeps and whooshes incessantly; a roommate, who also gets late night vital sign visits, etc.) Some of the nurses also have a bad habit of leaving your door open as they exit, leaving you vulnerable to a whole new set of hospital sounds.
*Nausea/hunger pains—You will be confined to a bed which is strategically situated beneath a television which will show, on more than one occasion, food commercials. Because your small intestines have not "awakened yet, be prepared for a diet consisting of lemon-flavored sponges.
*No shower or bath for at least five days—maybe more. The nurse will wash you daily, so I hope you're not shy—leave your dignity at the door.
*Nose gauge—this tube is inserted into your nose, down your throat and into your stomach to suck out excess bile and acids that inevitably accumulate in your stomach; without it, you'll vomit constantly. Need I say more? YES:
March of `97—post surgery; the 11th day)
I am flanked by two nurses. One says, "Now Mr. Brooks, I want you to try and drink this water as I put the NG (nose guage) in."
They are about to slide it into my nose, down my esophagus and into my stomach. Nurses have apparently found that the tube, approximately the size of a garter snake, is easier to insert if the patient is drinking a liquid simultaneously. The "gag" factor is very, very high during this exercise. The first, and most influential factor contributing to the anxiety of this tortuous affair, however, is the attitude of those who administer it. One nurse candidly admitted that she "gagged" at the mere thought of administering the device. And my doctor admitted on more than one occasion that this was probably the most painful procedure to endure.
"Okay—breathe Mr. Brooks, breathe!" the nose gauge was just halfway in, and I couldn't stop gagging--- and I definitely could not breathe. I started to panic. My sense of vanity had me wondering if my face had contorted into some grotesque mask of horror. And for a split second, I felt like laughing at the thought of having a self-conscious moment under such circumstances.
"ake id oud (Take it out)," I remember saying to one of the nurses. "Ing yoking (I'm choking)."
"We're already done, Mr. Brooks," she said. "Just give it a minute. It'll get better—just relax."
There are at least four points during this procedure where the gag reflex is so strong that it seems that "true happiness" at these moments would mean having the ability to vomit long and hard and often—and then be done with it. There is the moment when the hose is first sent into the nostril, down to the esophagus (It was at this point that I had the strongest urge to vomit). The mere thought makes my eyes tear up a bit. And then, as the tube moves down the esophagus, your mouth widens and your throat naturally constricts (another gag point—seriously). The hose continues into your stomach—and it feels as if your entire esophagus constricts in an attempt to rid itself of this foreign object—repeatedly. The hose is then left in this position for approximately 24 hours in order to siphon the excess stomach acid and bile that would otherwise be vomited out by mouth.
A nurse would appear at least once every two hours to measure the contents of the large plastic bucket which was linked to my NG---if there was too much bile and acid spewing into the bucket, the NGg stayed in. The hose comes out if the amount is slowing down—that means there is intestinal activity which is allowing the aforementioned to pass through. However, if they remove the hose, and you vomit again, then you most go back to square one—watching the bucket. In my case, there was an even worse scenario. The ng was removed---then inserted again when I vomited. And then I vomited after it had been inserted a second time. I was actually vomiting in spite of the ghastly NG siphoning effects!
I'm Starting to Lose It...
Here it was, the 11th day after the surgery, and, as always, the group of internists and semi-surgeons swept into my room to ask, yet again, if I was "passing any gas yet." I had grown tired of this simple, repetitive line of questioning. I decided to assert myself; take control, and insist that the Nose Gage be removed.
"Do you feel any bubbles or anything?" David, the assistant to the Head Surgeon, asked. His entourage appeared to be collectively pregnant with anticipation, waiting for my response.
"Bubbles?" I asked, not hiding my irritation. "I can't believe you are still asking me about my farts—yes I've had bubbles—and it hasn't made a difference—I want this nose gauge out - I threw up with the thing in me anyway. And I want to try and eat food again. I will start with soup, or water—I don't care if it's jello—I want to give it another try. And I want you to contact Dr. Koch (the Head Surgeon who performed the operation) to get his feedback, because nothing seems to be working, and frankly, I believe the situation deserves extraordinary attention." The team leader exchanged a knowing glance with one of the doctors as I spoke—a glance which seemed to say, "Oh God, here we go." A ripple of discomfort passed through them.
These morning meetings had here-to-fore been somewhat civil, if not jovial, complete with jokes, smiles and good rapport. It was now evident that the tide had turned; I had transformed into just another "difficult" patient. "It would not be wise to take the nose gauge out at this time," David, the head liaison stated. His tone was authoritative and practiced. He was determined to maintain a sense of control. "We know the nose gauge is the most difficult part—but it's still necessary for you at this time. The nose gauge wasn't administered correctly before—they didn't have it down far enough—because that wasn't supposed to happen. Your intestines are still distended, and have not awakened yet--and if we take it out, you'll throw up again. As for contacting Dr. Koch—he is currently in Sweden, but we will attempt to contact him."
I was determined to maintain a leadership role on this issue, however. And I felt an odd sense of pleasure in asserting myself in spite of the overt pressure from the somber team of white coated individuals who stood over me---who were literally looking down at me. I had lost so much to the medical "system" at that point; stripped of my dignity and strength in so many ways. I did not care about hurt feelings, or bruised egos.
"Is the decision mine to make," I asked with a sneer, staring into the Dr.'s brown eyes. He slowly nodded his head. His entourage had stealthily moved closer to that part of the room, anticipating the drama. "Then I want the gauge out as soon as possible. I'll take my chances." The doctor turned to face me at that point, his face a mask of stoicism. "I do not think it's a wise decision. But we'll arrange for a nurse to take it out."
After it was removed, I was determined to do everything within my power to bring my innards back to life. I walked and even tried to visualize my innards waking up. But most of all, I sat on the toilet in the bathroom and prayed for "bubbles."
"Why?" I recall asking my Mom, who was instrumental in my decision to have the surgery."Why did I just give in to the pressure to just, take it out." My colon was inflamed and I knew it. But as long as I took the medication, it wasn't so bad. Maybe I should have continued to fight the inflammation with the Prednisone and the anti-inflammatory pills, even if it meant taking three big horse pills, four times a day--or was it four pills, three times a day. Whatever--At least I sort of knew what to expect with the pills. At least I could eat and drink and I never threw up and didn't lose 25 pounds in 13 days.
It was the twelfth day—the insurance was running out and I had lost so much weight that the doctors were considering feeding me intravenously via a major artery in my neck—so far, I had just been receiving Saline solution, mainly for purposes of hydration.
To date, I have never been as afraid as I was that night. I slipped off of the bed and got on my knees. Tears were streaming down my face. I had no more fight left; I gave up. I closed my eyes and literally pictured myself in a fetal position, cupped in the gigantic, ghostly hands of God--and I felt a sense of peace; I let it go.
"Oh God," I said, "if this is it--if this is my time, I'm okay with it. But if you let me live; if you pull me out of this, I vow to stop living foul, to stop just living a selfish life, just living for myself. I promise to become a positive tool for you, Oh Lord, to allow you to use me a force of positivity for others in some way from this day forward, Oh Lord..." I went on that way for awhile, until I succumbed to exhaustion. As I lay there, I started to picture myself dancing. Not any old type of dancing, but hip hop dancing. I smiled--and then I started to giggle, probably from the delirium. Anyway, I dragged myself off of the floor and started to do the snake with my whole body, and then I just focused on my belly. I started rolling my belly, from the top of my abdomen down and back up again. It was about 3 am--and without thinking--I went to the toilet and sat down.
And then, it happened---a full-fledged, albeit small, bowel movement.
"Oh God," I shouted, tears streaking down my face. I jumped up to push the call button and screamed for the nurse. "Can you believe it? Look! That's good, right?" The nurse was a little put off by my excitement; I think she was expecting a problem. But she caught on when she saw the small, green turd in the toilet cup.
"That's great Mr. Brooks—good job—I'll inform the doctor right away."
That was probably—no, it was the happiest point in my life, to date. I felt like a man on the verge of being released from prison. The next day I was allowed to eat what will always be the greatest meal I've ever had: plain toast, chicken broth and juice. I demanded to be released the very next day, despite objections from the doctors who insisted I stay and eat solid food for one more day just to be sure.
Back then, as I was going through it, I was angry about the fact my fate "rested in the hands of the health care system." I raged a system which required a certain level of ignorance on the part of its clients; a process in which surgeons failed to mention the possibility of the nose gauge procedure, sleep deprivation, or the possibility of dramatic weight loss. Maybe it was the prednisone, but I felt like I had been duped—bamboozled—conned. I saw this turn of events as anything but a rite of passage, or a "wake up call" from the Man Above.
I was blind, but now I see...
During that cathartic time, when I was in that hospital room for 13 days without food or water by mouth, my family came from Arizona and stayed for as long as they could (about 7 days); my sort of girlfriend just stopped calling; my friends dutifully visited on a semi-regular basis and then went on with their lives. I went home to an empty apartment and struggled to get by. I had lost so much blood due to the surgery that I was anemic; I got light headed just walking around my apartment--I had to hold on to the couch, or the chair, or whatever I could lean on as I walked from here to there.
I had lost so much weight--about 25 pounds--so I was 6'1'' and about 140 lbs. I looked like an old (because I was a little bent over) anorexic. Because none of my clothes fit, I wore these green or black synthetic sweat pants constantly, and ate like a prisoner who hadn't seen or smelled food in years. I was in a hurry to gain my weight back, to get up to at least 160 lbs--and I refused to let anyone see me until that point.
But most of all, I was driven by a desire to change everything about my approach to life in general. I know it sounds corny, but I did feel like a had been given a new lease on life; a chance to go out and make the kind of substantial and spiritual connections with people that I had not made thus far. I was struck by how vulnerable I was to the randomness of life--and how I did not want to ever go through anything like that alone. The experience made me realize how hungry I was for true spiritual connections and family, intimacy.
In June, 1997, three months after surgery, I went out to a club-the first time doing so since the surgery--and asked a young woman to dance, started a conversation and then got her phone number. She was a teacher and a mother to two boys, aged 7 and 8 years old at the time. If I had met her prior to my experience, that would have been the end of the story, as I avoided women with children like the plague. Instead, the conversation continued, and we were married one year later, with another child, Jordan, on the way.
Here it is 17 years later, the "boys" are 26 and 27, (Jordan is 17); I have about 17 years of sobriety (from weed and any other substances) under my belt; I decided to go to law school and get my J.D at the age of 40 and I've been a Case Manager with Contra Costa County's Employment and Human Services Department for the last three years.
Not a day goes by when I do not think about my vow, my promise to be a positive tool for the higher power that delivered me from my self-absorbed, shallow existence.
