Category Archives: 1st Crohn’s Disease Surgery

“Scars ‘R’ Sexy” Charitable Clothing Campaign

 This Video is my unique and heartfelt contribution to the  “Scars-R-Sexy” charitable clothing campaign run by RockScarLove.com.

People go through so many difficult ordeals in life and often the physical ones are memorialized by a Scar.  But, just as with everything else in life, it’s all a matter of perspective.  Some women playfully find Scars to be “Sexy” yet others see them as significant symbols of a time in their lives when they have overcome tremendous adversity.  People with Scars learn how to draw upon these symbols for perpetual inspiration and sources of strength and courage when life requires them to do so.

In this regard, I was lucky enough to come across a related quote in a Book written by Musician, Writer and Master Story-Teller, Jimmy Buffet, which has gotten me through Seventeen (17) Crohn’s Disease-related surgeries, beginning in 1988, and with the most recent one occurring in 2012.  The Book is, “A Pirate Looks at Fifty” and that Jimmy Buffet quote is as follows:  “Scars are only Permanent Reminders of Temporary Feelings.”

RockScarLove.com is inspiring and commemorating these passionate lives through a Demonstrative Clothing Line with a mixture of original t-shirts, hats and cool under-garments which celebrate this “Scars-R-Sexy” bold mindset.  More importantly, 100% of the Net Profits are being donated to a variety of charities; one of which is the Crohn’s & Colitis Foundation.  Accordingly, PLEASE watch this 3-4 minute Video, “catch the spirit” and then visit www.RockScarLove.com.  Thank you.

Copyright © 2012 Michael A. Weiss All Rights Reserved

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Crohn’s Disease Surgery: 17 Days “in the Joint”

On June 11, 2012, I was admitted to Mt. Sinai Hospital in New York City for what was approximately my 17th surgery for Crohn’s Disease.  Like the crew and passengers on “Gilligan’s Island” who set out to sail on the “S.S. Minnow” for “a three hour tour,” I was told to be prepared to spend 5-8 days in the Hospital.  However, due to my extensive surgical history, I knew there was a good chance of complications and that I could be “in the Joint” for several more days.  Sure enough, just like Gilligan and the Skipper, my “three hour tour” turned into 17 extremely challenging days in the Hospital, or “the Joint,” as chronic patients refer to it.  Unfortunately, I also had to survive without Ginger and Mary Ann.

What 17 Days in the Hospital, or “Joint,” Taught Me

More seriously, after a few additional unexpected days of vulnerability, reliance on impersonal medical professionals and overall confinement, the hospital starts to feel like a medical prison of sorts.  The effervescent personalities and supreme competency of most Nurses helps but it’s still human captivity.  Perhaps unlike the “Hotel California,” you can always leave but the various IVs in your veins and the Foley Catheter in your Private Part indicate otherwise.  Moreover, it has been my experience that how one copes with being a medical prisoner most assuredly affects their recuperation and state of mind going forward. Therefore, below is a summary of my most helpful and entertaining thoughts from each day “in the Joint.”  It is my hope this detailed but succinct recollection helps other patients when they are faced with unexpected delays in their discharge from hospitals no matter what the underlying disease or problem.

But First:

Nurses are the Backbone of the Healthcare System

Please also remember that no matter how great your Doctor is, the quality of your stay at the hospital is largely determined by your interactions with the Nurses who are the only medical professionals whom have contact with you 24/7.  These wonderful professionals are also responsible for your “continuity of care” such that tomorrow’s doctor knows about what happened to today’s patient. (Unfortunately, many doctors only believe their own eyes and skills of perception and that’s how they impede the progress of our healthcare system.)  In any event, no other medical professional is responsible for such comprehensive Patient Care so try and appreciate your Nurses and tell them how much you respect their efforts.  Also, hospitals now engage Hospitalists and Nurse Practitioners (“NPs”) to try and simplify and streamline the experience but if you are hospitalized more than a few days you quickly notice how our present Hospital & Healthcare Systems are not your Father’s “Marcus Welby, M.D.”  Rather, they are more like a modern day cluster-fuck, especially for those with chronic illness.  So, try and stay out of the hospital as best you can because once you become a Patient, all bets are off.

The Use of Social Media in the Hospital

My last observation regarding the “hospital patient experience” is that I am tired of listening to hospital executives struggle with how to incorporate social media into their businesses.  All it takes is one executive to stay in the hospital as a patient for 24-72 hours and he or she will realize that there is so much downtime that a hospital employee should ALWAYS be walking around with a Flip Camera or microphone obtaining Patient Testimonials of all sorts.  Some may be good; some may be bad.  Either way, these sound bites will modernize the experience and improve patient care.  Whether patients opine on their surgeons, doctors, nurses or even the facility, there is much to be learned from the new patient consumer and I can’t think of a better way than to capture it in real time using modern-day technology which can be shared across all platforms of social media.  Not everything they hear will be good but patients will understand the hospital’s intention of capturing their insights and thus will more often than not contribute useful personalized nuggets of modern-day information which will help bring hospitals up-to-speed in terms of operating as both a business and a source of patient care.

The Surgery

Based on detailed and exhaustive diagnostic testing of my small bowel, I went into the June 11, 2012, surgery knowing I needed repair of three (3) Strictures (or substantial narrowings) in my small intestine via a surgical technique called a “Strictureplasty” and possibly one (1) “Resection” if the culprit was diseased intestine instead of Adhesions.  My surgeon performed each procedure expertly but he expressed concern that he had to cut through Adhesions (i.e., Scar Tissue) for almost 2 hours before he could even get to my small intestine. With Crohn’s Disease, surgery is not an ideal treatment because the disease typically recurs and thus could warrant additional surgery.  Since each patient has only a certain amount of small intestine, patients should only undergo surgery when nothing else works.  This explains my predicament as no Crohn’s Disease medications have been able to slow down the advancement of my rather aggressive disease.  In terms of Adhesions, scar tissue forms with EVERY surgery and more surgery begets more Adhesions.  In fact, on more than one occasion, I have had Crohn’s Disease surgery simply because Adhesions had grown such that they were blocking my small bowel.  Therefore, having so many Adhesions is unfortunately a part of my life since I’ve already had 16 or 17 Crohn’s Disease surgeries in and around my small bowel and that would explain the cocoon of sorts my surgeon encountered and had to cut through when he opened me up to operate on my small intestine.

A Recent Surgical Memory Made me Anxious

A few days before I was to report to the hospital for the June 11, 2012 surgery, I started to think about my 16 previous small bowel surgeries and the pain and unpredictable ups and downs I experienced while in the hospital and at home after the surgery. I also started to freak out about that particular moment being rolled into that sterile silver-shining surgical suite looking at a Black-n-Decker-type saw joking around with the various medical professionals attending to my surgery knowing that once they gave me the Michael Jackson “juice” I was going to wake up in severe pain with yet another abdominal surgery to recuperate from.

But truth be told, my mind was also playing tricks on me more than usual because of my last abdominal surgery in 2010 which involved a very talented surgeon at a world renowned institution who nonetheless had the personality of a handball and was more interested in his post-operative statistics than in my welfare. I can’t prove this so I am leaving his name out of it but his post-operative actions certainly would make a reasonable person wonder about his priorities.  So, when my body was slow to “wake up” after the surgery in 2010, his staff still started me on the bowel recuperative ladder of clear liquids than full liquids than soft foods simply because I had told them I thought I had “passed gas” in my sleep.  That is partially my fault because after not eating for many days the mind’s inclination is to error toward passing wind but the speed with which I was bumped up from clear liquids to real food was nonsensical, especially with a patient like me who already had 15 or so surgeries in my small bowel.

The Benchmarks of Bowel Surgery

Please follow me on this and trust I am utilizing medical terminology:  Passing Gas after bowel surgery is the 1st touchstone of success like when NASA shoots off a Rocket and it flies straight up to the moon.  In keeping with the NASA metaphor, having a bowel movement is like walking on the moon and returning to the ship without incidence.  Passing Gas also indicates moving ahead with a clear and full liquid diet while “laying a log” means you are ready to forge on ahead to the $99,000 question, or graduate to eating soft foods. This is the logical bodily function measurement of success after bowel surgery so long as your bodily functions kick in normally after you drink and eat.  The exception is if you become “Distended” where your gut starts to noticeably stick out indicating that the liquids or food are not being properly digested.  Gross Abdominal Distension is VERY painful but the body’s natural protective powers alleviate this pain prior to your stomach exploding by Projectile or Violent Vomiting.  This is not the slickest of super powers but the pain of Gross Abdominal Distension after bowel surgery will make you wish you could vomit if only to alleviate the pressure.  (I apologize for the graphic and somewhat gross terminology but in the hospital these words are “terms of art” so please cut me some slack as I’m trying to be 100% honest in the hope that others learn from my misfortunes.)

The Perils of Gross Abdominal Distension

In the days following my 2010 surgery at this world renowned facility, my surgeon’s team discharged me because presumably I was eating and had passed the flatulence and defecating criterion despite looking like Santa Claus after gouging on 35 White Castle hamburgers.  However, on the day of Discharge, when my family was flying home to NJ from this hospital, I begged the intern and resident (the surgeon was too arrogant to meet with me and face his “failure”) to reconsider my Hospital Discharge because I obviously was not ready to be discharged.  I could see their eyes examining my grossly distended gut and their brains beginning to listen to me with cause to be concerned but they told me that patients often are well enough to be discharged from this heavenly hospital but at the same time they may not be well enough to return home as the pressure in an airplane could make a distended or prematurely healed abdomen explode.  Nice.  Their lawyers must have coached them well.

Mama Cass & Projectile Vomiting in a Small Hotel Room

My Mom and sister boarded a plane back to New Jersey but not before getting me a hotel room directly across from the hospital.  Since we were trying to save money, I opted for the smallest room and that is exactly what I got.  Standing in the middle of the room, I could stretch out and touch the 4 corners of the sleeping area with the TV and bathroom only feet away in different directions.  Like anyone hospitalized for a significant period of time, I was relieved to be out of the hospital but I still felt painful pressure in my midsection as whatever I had eaten was forcing it’s way either down my bowels or up through my mouth; whichever was the force of least resistance.  My money was obviously on gravity but I never was that lucky in gambling.  Sure enough, at 3 AM or so, my body decided which way to go and I was awoken while in the middle of Projectile Vomiting all over myself, my bed, the TV and anything within 6 feet of my mouth – and nose.  UGH.  Besides the obvious, I was also Homesick and took no solace in the fact that I was right in not being ready for Hospital Discharge but there was no female to impress and even if there was, I didn’t exactly look like I had just made the winning catch in the Super Bowl.

Please understand that I’m not trying to write salacious details; all I am writing is the truth.  I was all alone, thousands of miles from home and having almost choked on my Vomit, I didn’t want to go out as a Mama Cass-type personality who bought the farm at a hotel room not even 100 yards from this presumably great hospital.  So I cleaned up everything that had even a hint of my insides on it and assumed I had evacuated enough to take a shower and go back to sleep. I was even optimistic that perhaps I could fly back to NJ the next day since there couldn’t possibly be anything left in me after I hit the TV while regurgitating.

While showering, I started to review the events of the past few days and I grew angrier and angrier since had my 2010 surgeon EXAMINED my Gross Abdominal Distension, he would have noticed that something was wrong because my belly was so “blown up” I looked like the Octomom carrying at 8 months.  I also had a very serious incision which ran almost the entire length of my torso so at that time in the shower there was no time for playing the blame game as I had to switch gears back into Survival mode.  In keeping with my reasonable goal of not waking up vomiting, I tried not to think about my horrific experiences at this glorified hospital and went back to sleep.  But at 5 AM I was awoken again in the middle of Projectile Vomiting and it seemed my body was in convulsions since not much was coming out but I was gagging so furiously that I could barely breathe.  Even my Bookie could have told me that I needed to be Re-Admitted to this hospital so I called this “world-renowned” hospital to make the arrangements and in my post-operative state during which I couldn’t lift more than 10 pounds due to my entire torso being cut from top to bottom, I packed up my luggage, called the Concierge and explained my situation. The Concierge could not have been nicer and told me to just leave my luggage outside my door and they will store it for me indefinitely at no cost.  I warned her that the room was nasty but she brushed it off and made me feel like a priority.  She then told me to worry about nothing but getting better and just get back to the hospital safely.   Contrary to my experiences at the arrogant hospital, there are nice people in this world.

The Longest Yard – Back to the Hospital

As soon as the hotel porter arrived, I gave him $20.00 and babbled the least gross details I could muster up to best explain my situation.  He was very cool and insisted I let him walk me to the hospital.  The hospital was only a cross-walk away but it was the longest 100 yards I ever had to maneuver as I was weak, dizzy and still occasionally vomiting or at least gagging.  It was like “The Longest Yard” except no-one would have paid admission to see the ugly show I was putting on.  I looked like the character “Caretaker” had he survived the explosion in his prison cell.  I was running on adrenal because I didn’t want to die 30 feet from this hospital since that would be the way people remembered me.  “So close, but yet so far.”

A Great Hotel Porter & a Schmuck of a Surgeon

It’s funny what you think of when you are seemingly faced with your mortality.  I tried to guide my mind to some of the beautiful woman I have been privileged to know but the prospect of being re-admitted to the hospital drowned my positive thoughts with a very harsh reality.  Anyway, someone from the hospital put me on a gurney and wheeled me the rest of the way to re-admission.  At that point, the Hotel Porter had made the hand-off and was leaving.  I thanked him and warned him to have his underling clean my room.  He smiled and moved close to my ear and said: “Don’t worry, Mr. Weiss.  By the way, how in the world did you hit the TV?”  He smiled, I laughed.  A light moment I so desperately needed in light of what was to come over the next few days and weeks.  When I got back to a Patient room and had my first interaction with my arrogant Surgeon, he ignored the fact that I was discharged too soon and blamed ME for not “opening up” fast enough.  It felt as if he had post-operative surgical statistics and I was that outlier patient who ruined his average.  I begged him to listen to me but he had his mind made up.  It was the worst of post-operative experiences especially since it stemmed from my surgeon NOT LISTENING TO ME.  That worried me and will always worry me with respect to any surgical procedure.

It was this lovely 2010 experience which was etched in my mind as I made my final arrangements for the June 11, 2012 Surgery.  (Note:  My 2012 surgeon seemed like the opposite of the schmuck who operated on me in 2010, and he proved to be so, but my mind was so affected by the aforementioned experience that I couldn’t help but worry.)

Below are contemporaneous notes from my experiences in the Hospital during the day and date indicated.

June 11th – Day 1 – Date of Surgery

I reported at 11 AM for a 1:30 PM surgical tip-off time but as soon as I arrived at the Pre-opt area they rushed me.  Preparations went so fast that I did not have time to contemplate how difficult this hospital stay might be.  Before I knew it, I was dressed for surgery lying in a bed in the “on deck circle” but not knowing my number in the line I was in.  I then saw my surgeon and he was very reassuring and promised me that given my exhaustive experience he would ALWAYS consider my body’s past experience.  His words gave me tremendous confidence.  As soon as he left the pre-surgical area, a couple of anesthesiologists asked me to sit up as they started grooving the Epidural into my back.  It was all becoming too real.

Once the Epidural was secured, I was rolled into the Operating Room and for some reason I did not have a panic attack as the entire crew of medical professionals were nice and funny.  Maybe they hid the Black-n-Decker Table Saw from me?  Strangely, my biggest fear after surgery is being COLD and in Pain.  I think it is the Vulnerability each sensation causes.  Together, they make you feel like that dream when you are in the 6th Grade Assembly on the stage fully naked in front of all your classmates.  They had me on the drug Fentanyl and also gave me a “PCA” Pump which is a Patient Controlled Analgesic gadget which allowed me to give myself doses of the Fentanyl every 6 minutes.  They were supposed to also put Fentanyl in the Epidural but they did not, at least at first.  All in all, though, for the first 10 hours after surgery my pain seemed to be under control and the nurses were fantastic.  They really made me believe that I was getting personalized attention because this was my 17th surgery.

Tuesday, June 12th – Day 2

My sobriety was unpredictable but I do remember my surgeon coming in and explaining that my surgery was a success but that he had worked more on freeing up my Abdominal Adhesions than he had on any other patient.  That freaked me out because as I get older (I’m 49 as I write this), Crohn’s Disease surgery simply begets even more surgery no matter how successful it is.  For that reason I must train my mind to accept that there is a very good possibility I will be back in that Operating Room because of these Adhesions and also because where the surgeon did the Resection the subsequent Pathology Report indicated that it was active Crohn’s Disease and there are presently no Crohn’s Disease maintenance or prophylactic medications I could take having exhausted even the cutting-edge Biologics.  Notwithstanding the foregoing sobering thought, I had to direct all of my survival skills on the matter at hand and that was overcoming this surgery with adequate pain relief and trying to stay even keel throughout the inevitable ups and downs of the hospital stay.

As I began to wake up from the anesthesia, the pain medications started to fail me because with each passing 30 minutes my gut and almost entire torso began to feel raw as if my surgery were performed only a few minutes ago.  I informed my nurse but I was in such intense distress that it was obvious to everyone that something needed to be tweaked to help me.  Having been through this so many times, it is difficult to continue to participate in what I call the “pain management trial and error approach” but I had no choice.  Accordingly, at first the very nice folks in pain management increased the PCA “Bolus” (i.e. a one-time shot of increased medication) which was the amount of extra Fentanyl I could get every 3 hours or so to help myself.

But after a while even that wasn’t enough so they increased the 6 minute dose along with the frequency of the Bolus, i.e., instead of every 3 hours I could get it every 2 hours if I asked.  Then one of the nurses realized they hadn’t put Fentanyl in the Epidural and that seemed to explain why I was still in such discomfort, so once they did, all of these combinations seemed to calm my pain to an acceptable limit.  This is what I mean by the “trial and error approach” because they want to give you the least amount of pain medication as is possible while also resolving your unreasonable pain. I detest this process since my body has established enough data to provide correct starting and increase points but almost all doctors ignore patients in this regard.  Surgeons want the body to work as naturally as possible and narcotics tend to slow down the intestines.  Since increased bodily functions get the patient an advanced diet and subsequent discharge from the hospital, all of the doctors try to keep the amount of pain medications to just the amount necessary to take the “edge” off the pain.  However, for the first 2-3 days of full-blown abdominal surgery, the doctors understand it is amongst the most painful surgeries so they let you take what you need to soon at least get out of bed and stand up.  I’ve always required a large amount of narcotics due to the combination of high drug tolerance and low pain threshold (this is a byproduct of too many surgeries) and I’m getting tired of having to prove it by screaming in pain.  But, that’s the game.

As an experienced surgical patient with this exact surgery, I knew that I would wake up from surgery with 2 IVS and a Foley Catheter (this goes directly into your man or womanhood and prevents the need to get out of bed to urinate so that you could rest), so I needed some help as there’s nothing more frustrating than having all these attached tubes and intense pain but yet needing to move a bit to answer the phone or to change the temperature in the room.  I find it difficult to call the Floor Nurse for such mundane matters when they have more pressing needs with other patents to address so I hired a “Nurse’s Aid” or “Nurse’s Assistant” from Tuesday Night, June 12th (i.e., when I figured I would truly wake up from the surgery) until Friday morning, June 15th when I knew I would have the Foley Catheter taken out; I’d be in more manageable pain; and I would be much more coherent and able to “fend for myself.”

Hiring a Private Nurse was out of the question (although I did hire one years ago when it was patently obvious that the nurses at Mt. Sinai Hospital were overworked with 8-10 patients each) since I did not need a Nurse’s expertise, and, besides, they typically cost $75/hour. But Nurse’s Assistants are only $300 for each 12-hour shift and they are wonderfully trained to help patients with anything and they always seem to show up with enthusiastic attitudes and that helps with the mental recovery.  Also, the Nurses at Mt. Sinai Hospital on Floor 9 East are THE BEST for gastroenterology problems.  The Nurse’s Assistants also helped me get up off the bed and walk which is a key to getting the body back to normal.  Without them, it would have been impossible to organize the 2 IVs and the Foley Catheter just to take a walk down the hallway.  They also made sure my Room and I was clean and that I was getting all the medications on time since I was still too vulnerable to speak for myself.  I also like to have Nurse Assistants for the 1st few days because it puts less pressure on my friends and family to come by every day when I could do nothing more than moan and groan.  But come Friday morning at 7 AM, history demonstrated I would feel I was capable of managing my own affairs.  Besides,  while I could always use the physical assistance, I couldn’t afford even their reasonable price of $300.00 per 12-hour shift after indulging myself for the 3 1/2 days of Nursing Shifts.

Accordingly, I highly recommend Nurse’s Assistants for anyone who has anxiety about the post-op process or for anyone like myself who won’t have people visiting them routinely since they figure you are an old pro at handling surgeries. That’s a reality I hold with contempt because these surgeries only get harder and harder each time and I wished most of my friends and family understood that.  But then again, I think it is human nature and I try to ONLY focus on the positive when I’m in the hospital.  I don’t keep a list of who called or visited and who didn’t.  I’d rather smile and laugh with those of my friends and family who think enough about me to visit or call repeatedly than to build up animosity toward other people who could have a million reasons why they did not call or visit.

Wednesday, June 13th – Day 3

Roommates in the hospital can make or break your stay that’s why you MUST bring ear buds to drown out snoring as you listen to your iPod and be careful about getting too close to your roommate as some could have life-threatening diseases and it becomes very sad when you overhear them get bad news. I found this out when the doctors did their Morning Rounds with their residents on Wednesday morning at approximately 6:30 AM and the main doctor treating my roommate, whose bed was the first one as you came into the room, treated OUR room as his office.  Yes, a curtain divides us but when the doctor turns on the lights and I can hear everything that goes on and the doctor talks so loud it’s as if he’s in his own office, it feels intrusive until you consider that you are in the hospital and your privacy zone extends just to the tip of your nose.  Also, I was sleeping when he came in, which doesn’t come easy in the hospital, and I was so close to calling him Sergeant Hulka and advising him that “I know I speak for the whole platoon when I say that today’s 12 mile run should be cancelled….”  I was dreaming about the Bill Murray movie “Stripes” since I watched it on my laptop just before going to sleep.  Bottom line:  there is very limited privacy in the hospital and the sooner you get used to it, the better.

Turns out my VERY nice roommate had Colon Cancer and a few days prior had some type of bowel surgery to remove cancerous growths.  So, his surgical healing was secondary to his recovery and we did not speak much but I did pray for him.

As I was now getting into the hospital routine by going to sleep at 10 PM and rising at 4 AM (assuming a Patient Care Associate did not wake me at 1 AM to give me a sleeping pill) when the nurses took blood so that the results were ready for the doctors by the time they took Morning Rounds @ 6:30 AM, I had also become in synch with the Patient Care Associates waking me up every 4 hours to take my Vital Signs.  You can refuse but they still woke you up.  Additionally, with few exceptions, every hospital patient must have an IV line connected to them for emergency purposes but IV lines typically last for a maximum of 4 days.  Thus, I was getting close to being stuck again for my new IV and due to my various surgeries and hospitalizations, my veins have scar tissue in them and this makes me VERY hard to stick.  The nurses tried their best not to hurt me but after a while I felt like a pin cushion with both arms black and blue from successful and non-successful attempts at starting an IV.  Somehow you must “give-in” to this culture but every once in a while I refused a blood test because I felt it was superfluous for the nurses to take my blood every day when my ultimate problem did not involve my blood counts.  If a doctor corrected me, I did whatever he or she said.  In any event, I was ALWAYS respectful toward the Nurses.  You can disagree with them or refuse treatment but you must always respect them.

With my Nurse’s Assistants almost finished with their 3 1/2-day assignment, I tried to walk as much as possible with them on Wednesday to try and get my insides moving with bowel sounds.  No-one can predict when it will happen but walking around sure helps.  As things began to move around inside, I was getting increased pain from the gas bubbles moving through my bowels trying to make their way all the way through.  At times, the gas pain was so bad that I couldn’t answer the telephone or speak to people because all that came out of my mouth were moans and groans.

Thursday, June 14th – Day 4

During Morning Rounds, the surgical team of residents told me my nurse would be taking out my Foley Catheter today.  They also noticed I was moving quite nicely thanks to the aid of the Nursing Assistants and due to the Epidural which was taking away the most serious of my pains so they also suggested that I go from sucking on ice chips to advancing to a clear liquid diet.  The aforementioned nightmare experience in 2010 had somehow escaped me at that moment and besides, I figured how bad could some apple juice and yellow Jello be?

My nurse took out the Foley Catheter and it doesn’t hurt but it feels like an 8 second burst of tremendous pressure and then it is all over.  What a relief.  Now I only had 2 IVs but I was able to maneuver out of the bed without much help or fear of ripping a line out of me as I got out of bed.  When lunch and dinner came, I drank my clear fluids and the day’s activities were done.

Friday, June 15th – Day 5

When I woke up I noticed my abdomen was grossly distended and I was in a great deal of pain from the pressure this distension was causing me.  My surgeon completely understood but even he felt that this was just a temporary setback and he told me to drink the clear liquids if I felt like it. But then I remembered the events of 2010 and I hit the brakes and told the entire surgical team that I was not eating (or drinking) until the distension went down.  (I also know that my surgeon and the hospital must deal with my health insurance company which allots a certain number of days for this type of surgery and I was headed to exceed it.  It doesn’t make a difference that I am a “difficult case” until my surgeon concludes as such and communicates that to the insurance company.  I think he was waiting until after the weekend to do that based on my progress or lack thereof.)

The rest of the day I walked around trying to tire myself out in the hope that my body would go back to normal and I would resume my bodily functions.  It seemed to work because small amounts of gas started to seep out below and this was music to the ears of the surgical residents. This is when you must know the difference between Interns, Residents and YOUR SURGEON.  The Residents and Interns are smart and hardworking but they are learning.  I added to their learning curve by telling them that the gas I expelled was not the type which indicates I am “open.”  I sensed some of them nodding their heads in unison almost as if to say: “We are Interns and Residents.  This is just a Patient.  We are smarter than him.  Who cares what he says.”  However, others found my case intriguing and were willing to listen to me as long as I did everything they said.  All I know is that I tried to uphold my end of the bargain.  I also understand that many of these interns and residents get treated poorly by some Attending Physicians so they often take it out on unsuspecting patients by walking out as the patient is talking.  So I purposely write down my questions beforehand and preface my comments with a respectful plea that they not go anywhere until I am completed with my questions.  If I show respect for their time, they should reciprocate.

With the weekend coming up, I grew anxious about the Covering Doctors since weekends in the hospital are filled with the most junior of medical professionals with some rare exceptions. In that regard, I had a peculiar run-in with my own private Pain Management Doctor who now was taking over my case since the hospital’s Pain Team had removed the Epidural Friday morning.  I thought that was rather quick but they scared me with the risk of infection so I acquiesced.  However, I knew from experience that it would take approximately 5-10 hours for me to feel the difference with the Fentanyl loaded Epidural now out of my system.  For that, I wanted pain relief because sometimes that onslaught of pain can be overwhelming.

I discussed this fear with my Pain Management Doctor and he blew me off.  I was still close enough to removal of the Epidural to act competently and I tried my best to respectfully ask him to listen to me and to please give some credence to my experience with these things.  But he just did some calculations regarding how many days I was post-op compared to how much medicine I was on and was ready to write prescriptions for minimal pain medications which would have been a disaster waiting to happen.  It is also important to point out that he did not once ask me how I felt or if I was getting adequate pain relief.  He was like a robotic machine without any personal skills.  He then started telling me what he intended to prescribe and I respectfully said that the amounts he was suggesting would not be enough for me to avoid withdrawal and/or from getting adequate pain relief once the effects of removing the Epidural took hold.  Then, without provocation of any kind, he started berating me and telling me to tell him what to write.  I explained that between his medical knowledge and experience and my experience with 17 surgeries, we could come up with the correct combinations of drugs.

He then seemed to lose his patience with me and repeatedly berated me with comments like: “Tell me, what should I write?  You’re as smart as a doctor, tell me.”  He was like a petulant child and I had no patience for his disrespect of me especially when it came to my pain control.  I’d been through enough and wasn’t asking for much. He is the junior member in the Pain Management Practice I use and my doctor, the Primary Shareholder in that Practice, was off on vacation so I was stuck with this arrogant a-hole.

When I gave him background to all the points I had made, he threw his prescription pad up in the air and told me that I was going to get what I wanted anyway so what do I want?  His attitude belonged in a Lee Myles Transmission Shop and not a Hospital but I still kept my composure and told him I just wanted him to treat me on a personalized basis commensurate with how I have been treated in the past.  I added that I have no idea what I needed but then I listed what had and what had not worked for me.  We finally came to some agreement but it did not account for possible effects of the Epidural being removed.  This was the second time in 6 months I had a run-in with him; the first time being an emergency during which he again scowled at me but later called me to tell me he had an argument with his wife and should not have come down on me so hard.  I was stunned then and disappointed now.  But proving history repeats itself, a few hours later this jackass came back into my room and apologized for his behavior as he realized he could have dealt with things better. I told him I didn’t take it personal and shook his hand.  I lied.

Saturday, June 16th – Day 6

Amazingly, my Surgeon was in the Hospital BOTH Saturday and Sunday.  On Saturday he removed an 8-10 inch “JP Drain” which had been inserted into my abdomen during the surgery to give the doctors a window into the wound but now it needed to be pulled and sealed up since the skin around it was getting red from its desire to close my abdominal wound. Much like with the Foley Catheter, I was to experience an 8 second “discomfort” but this was much worse because it had essentially grown into my abdomen and when the doctor pulled it out it felt like he was pulling out my private parts through my abdominal wall.  UGH.

I was still grossly distended and wasn’t really passing any gas so the pain was actually increasing a bit.  Additionally, I started to feel the effects of the Epidural being removed and at times my speech was incoherent; that’s how much pain I was in.  The doctors don’t like to increase the pain medications because they slow down the body’s natural process of peristalsis which will only compound the Abdominal Distension problem.   Accordingly, I was apparently on the maximum pain medications I could be on and they all assumed the rest of the pain was just cramps or gas moving through my “new” intestines but it hurt like hell.  I obviously had a large bowel movement moving through my body and each time it moved an inch, I couldn’t talk for an hour.  It was SO uncomfortable but I knew that is the nature of the beast.

I then had another run-in with my Jackass Pain Management Doctor who was getting “nervous” about the amount of pain medications I was still on now that it was several days post-op.  I tried to explain to him, when I could talk, that my case is different than others since I’ve had 17 surgeries at this same spot but he didn’t care.  He was just worried about his own behind.  This stemmed from him slightly increasing my Bolus of the pain medication Dilaudid since I was in so much pain I couldn’t even speak.  I told him I was afraid this would happen once they pulled out the Epidural but he didn’t care. In fact, he again berated me and told me that if I became sedated because of the new Bolus, “That was it!!!!”  I didn’t even know what that meant but I asked him if it was really necessary to get so adversarial with me when I was in such a compromised state?  He countered with some long diatribe about the DEA being on his back and he has a wife and kids and wasn’t jeopardizing it for me.  It was bizarre and something I will take up with his Boss, my doctor.  I then not so politely told him to get out of my room as I didn’t need the negativity.

Sunday, June 17th – Day 7

Nothing much changed on Father’s Day except I appeared to be passing more gas so my Surgeon told me to take small bites of Soft Foods just to see how I feel.  I trusted him emphatically since he clearly trusted me.  He felt that maybe that would stimulate a bowel movement.  With the memory of 2010 not far from the forefront of my mind, I nevertheless did exactly what my surgeon said.  The difference was the mutual Trust and Respect between us.  My surgeon also went out of his way to tell me that he was taking my lead and that I need not worry no matter how long it took to open up.  His confidence in me was quite reassuring.

As it was also Father’s Day, I was glad my two best friends did not come and visit me since they had families of their own and I did not want my situation to come between them.  Therefore, I profusely thanked my friends for their uplifting efforts but pleaded with them to stay home and enjoy their wife and children on THEIR much-deserved day.  People should experience the kind of friendships I have.  My college roommate treats me like a brother and every time I watch the TV Movie, “Brian’s Song,” I think of him because there is nothing he won’t do for me.  My other friend has such a pitch perfect sense of how lonely I get and just pops up whenever he can just to hang out with me and make me feel normal.  These are not obligatory visits.  These are visits from people who care a great deal about me and I’m lucky to have friends who are that thoughtful & unselfish.  I could go on and on about what each has done for me but suffice it to say, they become the HOPE which sustains me when I am in the hospital and without them I could never muster the courage to deal with the hospital and doctor BS I must deal with in order to get well.

Monday, June 18th – Day 8

The accumulation of drinking the clear fluids and just a few bites of soft food made my abdominal distension get much worse and the pain was excruciating.  People tried to call me but I couldn’t talk on the phone, that’s how much pain I was in.  I also did not want visitors because I felt so vulnerable and in so much pain that I couldn’t carry on a conversation.  It was misery.  I felt like a dog hit by a car clinging to life at the side of the highway.  There was nothing anyone could do for me except let my body do what came natural.

After Morning Rounds, I went for my usual walk down the hospital hallway listening to a Sports Podcast to insulate myself from the unique sounds of the hospital.  I turned around and headed back to my room and as I was maybe 20 feet from my room a nurse who I had never seen on the floor before said, “You don’t look good, are you alright?”  I politely thanked her for her concern and then headed back to my room paying no mind to what she had just said.  At this point I was also feeling pangs of a possible bowel movement so I rushed to the patient bathroom and quickly sanitized the toilet bowl and all the surrounding areas with the bottle of Ammonia a nurse had secured for me and sat down.  (It is a MUST to at least accumulate a batch of those Alcohol Pads the nurses use to sterilize injection sites or better yet, a bottle of Alcohol for the purposes of sanitizing the entire toilet bowl area so that when that “urge” comes a knockin’ you can quickly clean the seat and surrounding area and then sit to do your business knowing you’ve counteracted all the hospital nastiness which gathers in that area of the Patient Bathroom.)

I knew that after surgery it was either going to happen or not and the bowel movement was going to happen when it was good and ready.  Still, everyone who is post-op obsesses over its arrival because that means the patient can eat and soon leave the hospital.  But as I sat down on my sanitized seat, I felt that unmistakable feeling that I was about to vomit.  I quickly switched positions and then my Projectile Vomiting experiences of 2010 came rushing into my brain as my stomach went into these uncontrollable spasms of regurgitation which included “stuff” coming out of my nose!!!  I tried to aim everything inside the toilet bowl but the spasms were so powerful that fluid ended up everywhere.  All I could think about was my poor roommate since he too was waiting for a bowel movement to be discharged so I immediately called the nurse and they had the cleaning staff sanitize the bathroom.

The abdominal distension felt better immediately but vomiting didn’t exactly mean that all was okay.  In fact, the surgeon ordered two (2) suppositories for me to use over 4 hours and for the 1st time in my life, nothing happened from taking a suppository.  For me, that was like lighting a match to gasoline and nothing happening.  It was SO frustrating.   My inability to keep things down sparked talk amongst the residents of inserting the dreaded “NG Tube” through my Nose up and then down into my stomach crating a siphon effect to remove all liquid and gas that otherwise would be built up in my abdomen.  I had this done many times before and it was the most unpleasant aspect of being in the hospital with Crohn’s Disease.  I was praying my Surgeon wasn’t going this route.  Besides the NG Tube being inserted without anesthesia, when it is inserted properly you feel like a horse being led around by a rope.  It is horrific and if that were to be the next move it would have devastated me.

Later that evening, I began Projectile Vomiting again, this time while I was falling asleep after a brutal day.  I was running out of clothes as I never anticipated a hospital stay this long and the clothes I brought were soiled with various bodily substances.  I felt disgusting but, then again, when you are in the hospital you are not prepared for a sexual encounter.  You are there to get better and sometimes you need to take 3 steps back before you can take 1 step forward. But thinking about Sex sure did help me cope with some of these situations.

Tuesday, June 19th – Day 9

They sent me down for an X-ray just to make sure everything was okay and that it was in fact my body simply taking it’s time.  Thankfully, all seemed fine.  Later in the day my IV had again run its course and I had to be stuck again.  My physical and mental nerves were getting brittle because each nurse who tried to stick me would try 3 times and then hand me off to a more experienced nurse.  I repeatedly asked the nurse why I had to be subjected to this 3-try rule and she just answered with the company line that a “stick” wasn’t classified as “difficult” unless a nurse had tried 3 times and had failed.  But this time I respectfully rejected every nurse on the floor after one very nice nurse who specialized in “difficult sticks” had tried 3 times. My rejection forced them to get the “Educator” who was apparently the man who taught everyone in the hospital how to start IVs, especially on difficult to stick patients.  I forgot his name but he was in and out of my room in less than 3 minutes and painlessly started a perfect IV.  I was very thankful but also perplexed at the difference in quality between the Teacher and the Students.  I suspect it has something to do with hospital budgetary constraints because there is no special IV Team in the hospital.  Still, IV sticks are the most fundamental connection to hospital patients and one would assume hospitals would pay more attention to it since it is the most personal interaction a hospital medical professional has with patients.

Wednesday, June 20th – Day 10

Early in the morning I called my Mom and told her: “The Eagle has landed” which is my way of telling her that I finally had a substantial Bowel Movement.  It left no doubt that I was now “open” so I felt good that things were moving along and that I would soon be out of the hospital.  Not to get too graphic here but suffice it to say that the reason why I was in such severe pain for days was that the size of this bowel movement was humongous and as it moved through my bowels it caused severe pain since it was moving into areas of my bowel which had been asleep since surgery.  In any event, they moved me up to a Soft Diet once again after going back and forth between Clear Liquids and Soft Duet depending upon the nature of my bodily functions.  Now it was a “Wait and See” attitude as the hospital staff had to monitor what went in my body and what came out.  If things came out without incidence, I would be able to rip this joint.  Notwithstanding the forgoing, my abdomen was still seriously distended so perhaps the Eagle Landed but it took off soon after landing.

At lunchtime, my college roommate, who is always Aces whenever I am hospitalized despite having a lovely wife and three of the cutest kids on the planet earth who want to be with him 24/7, brought me a tuna salad sandwich because the hospital food looked like they got it at Aqueduct Raceway.  He also had a Starbucks coffee with him.  I asked him if I could take 3 sips of the coffee since coffee has always been my morning “starter.” Everything was fine for a few minutes as we talked sports and about his 8 year old’s latest sports prowess but then it happened.  I was sitting in bed and I felt a “white heat” take over my body.  We know each other a long time so thankfully we speak in shorthand and I quickly motioned to him to please hand me the sanitized bucket at the side of my bed.  He got it just in time and then my mouth unloaded on this poor plastic bucket.  When there was no more left to vomit, my stomach and throat still went through intense gyrations. I felt horrible that he had to see me at this most vulnerable of states but sometimes even the closest of friends need to see first-hand what each is up against.  His face was white.  He couldn’t believe the ferocity of the ups and downs I had to deal with.  I felt possessed and must have looked like some creature from a horror movie.  After getting passed the physical part, I began to think of 2010 and I started to get depressed as it seemed I would never “open up” and that I would keep vomiting for the foreseeable future.

My doctors understandably switched me back to clear liquids as it was apparent my body was still not open for business despite my bowl movement.  Thankfully my surgeon understood that these factors belonged to my particular case and I was the case he was treating. Some other surgeons would have placed the responsibility on me as if it was my fault that my body opened and closed like Pain Clinics in South Florida so it was comforting that the doctor calling the shots was on my side – as opposed to 2010 when the surgeon was pissed at me for skewing his statistical post-operation numbers.  Hey, sometimes you gotta look for the small optimistic things otherwise the hospital will win and you will go crazy.

Thursday, June 21th – Day 11

As if I wasn’t stressed enough, I could hear my roommate in the bathroom making those pre-bowel movement sounds which precede normalcy.  Then, after he convinced the doctors that he was on the mend, he was discharged.  I then had my own room for no more than 2 hours when a contingency of loud foreigners checked it.  It seemed the patient was an older man who was admitted for a colonoscopy the next day but because he had some issues properly preparing himself for the test, the hospital admitted him the night before and put a portable toilet next to his bed.  At that point, I used my patient curtains to stay insulated as he was approximately 85 years of age and also deaf so his loved ones had to almost scream to communicate with him.  But later in the day when he had to drink the colonoscopy prep solutions, my annoyance turned 3-dimensional as he began arguing about having to drink the prep all the while defecating into this portable toilet non-stop so the curtain between us did nothing to curtail that all too familiar colonoscopy prep smell.  On the positive, at least he didn’t have to use the Patient bathroom.

There was nowhere to hide so I had to try and isolate myself with my podcasts and audiobooks so that his 24-hour presence would be over before I knew it.  But since he didn’t want to drink the required amount of colonoscopy prep solutions, his doctor had to come into the room and quiz him about the color and smell of his diarrhea.  He challenged his doctor in some foreign language saying something to the effect of: “I shit.  It is good enough.  In Russia, doctors do colonoscopy without preparation so you should be lucky I’m even trying to crap for you.”  Lucky for him, only I was able to translate his imaginary language and the doctor kept smiling and trying to motivate him to keep on crapping because the clearer his diarrhea was, the better the colonoscopy would be as a diagnostic tool.  Roommates.

Friday, June 22th – Day 12

Throughout the craziness of the mad Colonoscopy Crapper, who I refer to as Frans Klamer, I somehow managed to have another Bowel Movement so I began to feel that my days at the hospital were numbered.  That is, until later in the day when I was lying down in my spacious hospital bed and in my sleep began yet again to Projectile Vomit on myself.  Note:  When you are in the hospital you must alter your Dignity barometer a bit because bodily functions are signs of progress or problems. They don’t, however, make for a long-lasting wardrobe.  To that end, how many times do you see clothes advertised by their ability to withstand Projectile Vomiting and the occasional “Shart” or soiling of the undergarments?   This episode of Vomiting left me with SEVERE heartburn from my breast bone to my throat and I also felt like I needed to continue vomiting.  This made it very difficult to rest because if my head slipped below a certain level, I would get nauseous and have to barf.  “Would this ever end?” I said to myself.

The doctors decided to perform a CT Scan to get a better picture of what was going on inside my gut.  A significant hurdle was that I am allergic to IV CT Scan “Contrast” so I had to be pre-loaded with mega-doses of Prednisone.  They also preferred to perform the test on Saturday when more staff would be there in case I had another near-fatal reaction to the IV Contrast.  Then, at approximately 7 PM there was a nursing shift change and I was assigned a nurse I had never had before.  He was as impersonal as a sex doll.  When I told him I was nauseous he just spouted off the next time I could have anti-nausea medication which was something like 4 hours which seemed like an eternity.  Whereas, a nurse with a heart would have responded, “Let me see what I can get you to make you feel better.”  Unfortunately, at least the 1st time you get a nurse like this, you must weather the storm but remember his or her name so that you can tell the “Charge Nurse” that you never want to have that nurse again.  Usually the Charge Nurse will cater to your request because nurses and patients are people too and sometimes there are personality conflicts that are better handled by simply pairing up a patient with a different nurse. Anyway, when I told this compassion-less nurse that I had severe heartburn and was not only in serious distress but I was nervous having to drink the CT Scan Contrast the next day, he couldn’t care less which surprised me because almost every other nurse on the floor had been EXCELLENT.

Given the apparent apathy of my nurse, I was afraid to go to sleep for fear of vomiting on myself but the events of the past few days got the better of me and I succumbed to what should have been a relaxing respite.  Instead, I woke up yet again Projectile Vomiting on myself.  At this same time I had also received a new roommate who appeared to be an Insurance Salesman who was in for a bleeding ulcer which had been repaired years ago but all of sudden recurred. He tried to be friendly through the curtain but I couldn’t raise my voice to normal talking levels for fear of hurling all over myself.  When I did vomit, my credibility with the insurance salesman was intact and truth be told, my vomiting wound up not being such a big deal because I did have a lot remaining from my earlier bout with the upchucks such that after I barfed the pressure in my chest and bowels felt significantly better.  This made me feel better mentally as well because I did not want to need my new nurse overnight unless it involved me throwing up on him.

Saturday, June 23th – Day 13

Prior to going down to the Radiology Department, I had to drink a rather voluminous bottle of Radiographic Contrast.  With my heartburn better but still not normal and me regurgitating everything I tried to eat or drink, I was very worried about ingesting the entire bottle of Contrast but they required me to do so to obtain the best CT study. Sometime before being rolled down to Radiology, I went to the Hospital Gift Shop and bought Tums because I had been dreaming of them to soothe my heartburn.  All that nurse had to do was give me one to ease my pain but because he didn’t see it as being ordered on my computer profile, he refused to do so. He kept saying he was going to call my doctor about the Tums but it was the weekend and every doctor he asked would have no idea who I was.  At least now I was prepared in case this CT Contrast exacerbated the heartburn. Coincidentally, my long-term Gastroenterologist had told me on Friday that often the Contrast for these CT Scans had a way of “opening up” my body.  It was as if the CT Scan was both diagnostic and therapeutic.  I just didn’t know that he meant the Contrast would cause painfully wicked and unrelenting diarrhea.  With that in mind, I drank the entire CT Contrast bottle despite a few gags of utter nausea because I hoped it would push through the abdominal distension and serve as the impetus I needed to get my body acting normally again.

The test went fine but a few hours later I began to vomit up some Contrast while at the same time soil my underwear with uncontrollable diarrhea.  I can handle a lot but this situation almost brought me to the breaking point.  I had no more clothes left and when I tried to go to sleep I wasn’t sure which end of my body would be in action.  Thankfully, the vomiting seemed to stop but the CT Contrast was giving me non-stop diarrhea which had me racing to the bathroom at least 20 times on Saturday and Saturday night.  This was another time I did not want visitors because I felt so incredibly vulnerable but I knew that at any moment a close friend or relative could walk right through my curtain. I yearned for visitors because I was as lonely as the lone survivor on a downed Airplane in the desert but my rear end was so sore from these trips to the bathroom that combined with the intense gas pains slowly moving down my bowels, I just wanted to crawl up in my disgusting hospital bed, at least until nature called again.

I mentioned gas pains above because in any bowel surgery the recovery also involves tiny gas bubbles moving through your bowels very much like they would in a baby who has eaten his first food.  The problem is that no painkiller can treat this pain so the patient has to bear it sans any artificial assistance.  It sounds rather innocuous but it has been my experience that these unpredictable gas pains cause more pain than anything else.  It abates once your bowels start moving but until then you feel every gas bubble like you are being stabbed in the gut.  For whatever reason, the gas pain was intolerable on this day probably because the CT Contrast had caused diarrhea and things were finally beginning to move through the abdominal distension.  I tried to cling to this progress each time I clinched my teeth but before I knew it I was back in the bathroom with violent diarrhea.  Strangely, it appeared as if my rear end was now “throwing up” just as I had been vomiting from my mouth.  These are the things you think of when you are a hospital patient far too long.

At the 7:00 PM Nurse’s Shift Change, I once again was assigned the nurse from Friday night.  Before even greeting me hello, he told me that all of my pain medications had “expired.”  He said it like it gave him pleasure and I wanted to smack him silly.  I had never heard of this but it scared me terribly as I always want to know when doctors change my “Orders” and no-one warned me about any expiration on the mix of pain medications which weren’t ideal but they gave me just enough relief to not fear bouts of intense pain.  Maybe it is psychological, but I need to know what medications are at my disposal because I don’t trust anyone in the hospital.  No offense to the many FANTASTIC Nurses at Mt. Sinai Hospital but for such a long hospital stay I needed some control over my treatment. The fact that it was a weekend made it beyond difficult to get to the bottom of this because weekends at a hospital are, for the most part, staffed by the most junior doctors and I was a senior patient with more medical and hospital experience than almost all of the Residents, Interns and Nurse Practitioners.

The first thing I did was respectfully make a big stink over this nurse who I also had problems with the night before.  The Charge Nurse came into my room and immediately changed my nurse to a very nice and courteous nurse who I had dealt with before.  At the same time, an Aunt and Uncle of mine called to tell me they would be in the city and wanted to know if it was alright if they stopped by.  They were a godsend because by me it would have been impossible to have the pain medications reinstated but with an Advocate acting on my behalf, it was much more likely.  Long story short, after numerous phone calls by my Aunt and Uncle to my Pain Management Doctor along with the assistance of my new nurse, he admitted he made a mistake by putting an expiration date on the medications and told them he would speak to the Nurse Practitioner (“NP”) in charge and straighten everything out.  While that was progress, I knew he’d never speak to the NP and even if he did, the NP would be too nervous to reinstate the narcotic medications as it’s been my experience that NPs are often unsure of their authority.  My Aunt and Uncle agreed and at 11:00 PM, after calling my Pain Management Doctor who was on call, they finally received a return call and he said he would call the Nurse’s Station directly and make sure the Reinstatement Order was put into place.  It was, and I had a peaceful night once the diarrhea subsided and my rear end stopped feeling like it was on fire.

I mention this story with my Aunt and Uncle because, as a Hospital Patient, nobody in authority typically listens to you.  It is worse on the weekends and then when a doctor has to make more than one phone call to fix things, he or she invariably never does (especially on a weekend) so you have to be on top of them as if they are 1st-time waiters at a diner.  It is disgusting the way they treat patients on the weekends especially when there are signs all over the patient room indicating that “Patient Satisfaction is Our Goal.”  I believe the hospital’s intentions but I don’t trust the various medical professionals to do anything about it on a weekend.  Nurses are your best advocates but all they can do is contact the right people.  After that, it takes a focused individualized argument to change the status-quo.  Nurses are usually way too busy for that.  Thankfully, my Aunt and Uncle accomplished that for me on Saturday night.

Sunday, June 24th – Day 14

The results for the CT Scan came in and during Sunday Morning Rounds the Infectious Disease Doctor told me that I had some fluid buildup and my white blood cell count was high indicating I was fighting off some infection.  He chose two (2) antibiotics and I wrote them down just to ensure that there were no miscommunications.  With this progress, I began to see daylight to getting out of the hospital and nothing was going to upset that.  I encourage all patients to be as engaged with your hospital care assuming your condition warrants it because mistakes do happen in hospitals.  I had also brought various medications into the hospital to try and save some money.  When doing this, PLEASE tell your Nurse so that he or she can label them as (temporary) property of the hospital.  There’s no way around surrendering your independence to your Nurse in the hospital.  The sooner you accept that, life inside the hospital will get a little easier.

The rest of Sunday was fairly quiet since the abdominal distension had significantly abated due to my non-stop diarrhea and I was able to hold down the small amounts of soft-food I had eaten.  Apparently, my longtime Gastroenterologist was right in that the CT Scan proved to be therapeutic to my problem of not “opening up” after the surgery.

With my room all to myself I finally began to rest without fear that I would soil myself, my underwear or my bed.  But then I got a new roommate and this one was from the Midwest who had some growth drained from his lower parts but he was a Smoker.  He was a very nice guy and we had a great deal in common but a few hours after he was in the room I began to smell Nicotine.  I let it go since smelling that was much better than the smells of Franz Klammer prepping for his colonoscopy but it sure was strange.

Monday, June 25th – Day 15

The weekend had ended and the real doctors were back in town.  They were all impressed that my abdominal distension had gone down but because of my elevated white-blood cell count and non-stop diarrhea, they had to test me for the most aggressive infection known to those parts of the body called C-diff.  I had C-diff several years ago and it made my 20 or so runs to the bathroom look like an Opening Act.  It is often caught in the hospital so it would make sense I had it given how long I had been in the hospital.  In order to test for it, the nurses needed a specimen of a bowel movement which was basically all liquid at that point.  It was disgusting having to provide them with this sample but just like I said previously, your sense of dignity takes on a different meaning after being in the hospital so long and you do what you must to get out of Dodge.  Thankfully, however, I tested negative for C-diff and my symptoms were simply due to my body reacting badly to the Cat Scan Contrast.

Towards midday after chatting with my new Midwest roommate for a few hours, I smelled Nicotine as if he had been smoking in the bathroom.  To each his own but I knew that smoking in a hospital is VERY dangerous due to the amount of pure oxygen being used.  I never saw him smoke but within a few minutes the Security Guard came into our room and quizzed both of us about smoking in the room.  His investigation was inconclusive as I couldn’t say it was my roommate but once the Security Guard left I told my roommate that I don’t want to know if it was him but in the future please don’t smoke anywhere inside the hospital for the safety of other patients.  He agreed and the issue was put to bed.  We then went on to continue our conversation through the curtain.  He was a very interesting guy, we had a lot in common and I hope we stay in touch.

Tuesday, June 26th – Day 16

My surgeon was very pleased with my progress but yielded to me in terms of when I was ready to go home.  With all the ups and downs of my hospital visit, I told him I thought it was prudent to feed me three meals and watch me overnight.  If there was no funky activity, I should leave the hospital Wednesday morning.  He agreed.  The fact that my white blood cell count was now back to normal also aided my cause.

My IV line was again due to be changed but there was no way I was being stuck again so I had the nurse simply pull it out and every medication I had to take from then on was by mouth.  The hospital food was atrocious but thanks to my friends I had a few tuna and turkey sandwiches to try as tests for my fixed intestines and everything seemed fine. I also lost the Midwest Smoker roommate and picked up an elderly widowed man who had some laparoscopic procedure done and was leaving the next day.  Unlike with the Smoker, I didn’t have much in common with this gentleman but he made me sad as he had lost his wife only a few years ago and had no-one to care for him when he went home.  I hope that is never me.  This is why the topic of Roommates in the hospital is tricky.  In some, we see ourselves.  In others, we see people we hope we never become.  And then there are those we know may not be around too long and you hope your life never comes down to a life and death conversation separated only by a curtain in a hospital where roommates change as frequently as employees of Donald Trump.

Wednesday, June 27th – Day 17

Just as in a Hotel, the signs on the wall of a typical Patient Room in a Hospital clearly state that upon Discharge you must be out of the room by 10:00 AM.  That’s what it said at Mt. Sinai Hospital and crazy me; I took them at their word.  In that regard, my college roommate changed his busy daily business schedule to pick me up and drive me home to New Jersey despite having to be at what were now several inconvenient different places at specific times.  I told my nurse that I was on a tight schedule because if I missed this ride home I’d have to take a Cab and that could cost me Hundreds of Dollars.  My nurse was GREAT and tried to help me but that Pain Management Doctor held everything up and then when he came he forgot to prescribe a medication I’ve been taking for 3 years.  I had a few left at home but his office said he was in the hospital and my nurse simply had to page him.  Turns out he has no Pager Number so I went round and round with phone calls to and from the Pain Management Office while my diligent nurse tried to help me.  After a while of these futile attempts, I realized I could make do with the few pills at home so I decided to leave the hospital and simply call his office on Thursday to fix the error.  It was now 12:00 noon and my friend was getting nervous because he had an important business meeting in Westchester at 4:30 PM and I was possibly compromising it.  Even though I was up at 6:30 AM and emphasized during Doctor Morning Rounds how I needed to leave by 12:00 noon AT THE LATEST, there were still many Discharge Forms to complete and Drugs to pick up at a Pharmacy outside the hospital.

Having given up on my Pain Management Doctor, I thought I was home free with the Discharge Papers but my nurse informed me that the “Surgical Team” had not yet discharged me.  This was preposterous to me as the “Surgical Team” was all Interns and Residents and all they did was the grunt work of my surgeon who could not have been nicer or more understanding of my problem when he saw me during Morning Rounds.  Therefore, I had to wait until these “students” got to discharging patients even though the signs in the Patient Room clearly said 10:00 AM was check out time.  It was just another example of the “cluster-fuck” that is a Hospital and I politely asked my nurse to contact them and ask them to put a RUSH on my Discharge Papers because otherwise it was going to cost me a great deal of money and I’d been through enough already.  That verbiage must have made a difference because within 5 minutes my nurse had me sign the various Discharge Papers and she gave me my various Prescriptions to fill and sat patiently and went over all my limitations and whatnot.  I left the Hospital at 1:30 PM or so and my friend was as nice as could be even though I had screwed up his entire day.  It’s not fun having Crohn’s Disease but I am blessed having a few amazing friends who truly understand the foregoing chaos I go through each time I am hospitalized.

 © Copyright 2012 Michael A. Weiss

What to ask before your 1st Crohn’s Disease Surgery

The Power of Crohn’s Disease

As a 49 year-old battling Crohn’s Disease for almost 30 years, people always ask me two (2) things:  1. What is so unique about Crohn’s Disease which makes surgery such a last resort?  2. Why has it been necessary for you to be hospitalized over 200 times for treatment of Crohn’s Disease?  The answers to these two (2) questions set up a foundation of knowledge that every Crohn’s patient should acquire so they are properly equipped to most effectively interact with their surgeon during that 1st surgical consultation.  But before I share advice about what to ask your surgeon before your 1st Crohn’s Disease surgery, I think it is also important to understand the disease, its possible progression, its medications and its potential effects on your life.  That’s why I’ve chosen to write this “advice article” from a story-teller perspective.  After all, surgery is surgery but there’s nothing quite like Crohn’s Disease.

Experienced Crohn’s patients are not Doctors but for what we must go through with the disease, we might as well at least have some type of Honorary Medical Degree! To that end, Crohn’s Disease forces each of its patients to learn a great deal about his or her respective “type” and intensity of disease since Crohn’s can affect one person mildly yet another so severely that he or she can be disabled.  There is no medical explanation for this wide and diverse range of brutality. Moreover, these mild vs. severe flare-ups and overall Crohn’s classifications can inexplicably go away over time or they can exacerbate.  The auto-immune element of Crohn’s can also introduce other chronic diseases and conditions into the patient’s situation and these Crohn’s “related” medical problems can be more debilitating than the vice-like grip Crohn’s itself often has on the life of its patients.

When you also consider the life-threatening and life-style altering side effects of some Crohn’s Disease medications, the potential severity of the disease really comes into focus. Like many other Crohn’s patients, I have come to experience it as a disease which has a mind of its own whose main attributes are unpredictability and in-curability.  How can a person plan a life around such an often pervasive disease which causes debilitating and painful flare-ups the timing of which are unpredictable? Oh, and the underlying disease is incurable? There are many more dangerous and debilitating diseases than Crohn’s Disease but few feast on a patient’s physical, mental, psychological, emotional, financial, professional, social and familial well-being as much as Crohn’s Disease.

 A Correct Diagnosis of Crohn’s Disease

Assuming you are accurately diagnosed and manage to dodge the months or years of being misdiagnosed with people close to you thinking you are crazy for trying to associate together seemingly unrelated symptoms as if they are all a part of one horrific and existing disease (which they are, and the disease is called Crohn’s Disease), you’ve ultimately found “the” gastroenterologist who fits your needs, personality and lifestyle.  During the first few years, under normal circumstances you would have likely been under medical treatment for a variety of Crohn’s symptoms that occur when your body’s immune system is ill-equipped to fight off inflammation.  In fact, when posed with the task of fighting inflammation, your Crohn’s Disease somehow confuses your immune system and causes it to attack itself instead of the inflammatory intruder.  This sounds like fodder for an old Jerry Lewis Comedy but the practical medical effects of this bizarre immune system malfunction make Crohn’s Disease potent and pervasive.

Despite the possible serious manifestations of Crohn’s, your gastroenterologist will start you off with the most conservative medical treatment and then gradually move you up that scale as your condition warrants.  But as you know, your condition may forever stay at that very treatable level or it can get rather aggressive like mine and that’s when your doctor has to move to more “systemic” medications or eventually have you consult with a surgeon about surgical intervention.

Crohn’s Disease Recurs which tends to negate Surgery

In answering Question 1 above, it’s important to understand that Crohn’s Disease tends to “recur” in that, by way of example, having surgery to remove 4 inches of diseased small bowl intestine might solve your pressing medical problem but the mere act of surgical intervention could start the need for continued removals or surgical repair of additional small parts of small bowel intestine.  The problem with that is there is only approximately 23 feet of small bowel in the human body and your small bowel is a very important piece of human equipment. Personally, I had a small bowel resection surgery which fixed an extremely painful then-pressing Crohn’s flare-up only to have Crohn’s come back or “recur” and affect the same area of my bowel a mere two (2) months later.  After almost another two (2) months of aggressive medical treatment to try and avoid another bowel surgery, this Recurrence of Crohn’s Disease in my small intestine required another surgery to remove more of my small bowel only one hundred twenty (120) days from the date of the prior small bowel surgery. Additionally, and as referred to above, the 23 feet of small bowel serves several different important bodily functions such as digestion and absorption of nutrients so each time a portion of the small bowel is surgically removed or altered, the patient will have to make significant lifestyle adjustments to remain healthy and appear normal.  There is also the reality that every surgery creates scar tissue or adhesions and these natural byproducts of surgery can, by themselves, cause Full or Partial Bowel Obstructions necessitating even more surgery.  This additional surgery creates more scar tissue to the point where a viscous cycle forms such that the following credo was created: “more surgery begets more surgery.”  In summary, these recurrence issues are the reasons surgeons don’t like to perform surgery to fix or repair Crohn’s Disease damaged intestine.

Crohn’s Disease Medications

Prior to having to consult with a surgeon, the traditional Crohn’s Disease treatments and medications with which you might be familiar generally fall within the different levels or degrees of the disease and are as follows:

Anti-inflammation medications: (Asacol, Dipentum, and Pentasa);

Cortisone or Steroids: (Prednisone, Budesonide);

Immune system suppressors: (6-mercaptopurine [“6MP”], azathioprine, Methotrexate, and Imuran);

Biologics: (These are injectable “Anti-TNF” Agent medications such as Remicade, Humira and Cimzia which have been proven to be very effective pursuant to current Crohn’s research.  More specifically, the most current research indicates that the injection of these drugs binds them to “TNF” substances and that will block the body’s abnormal inflammation response. Some studies also suggest that the usage of biologics may enhance the effectiveness of immuno-suppressive medications. While I can attest to the almost dramatic positive effects of some biologics, I can also attest to the fact that the use of biologics in Crohn’s Disease can have VERY serious long term side effects many of which are only now first coming to the attention of medical practitioners.  It’s one thing to be aware of these terrible consequences due to the  small print [or fast spoken] legal disclaimers on the packaging inserts [or in TV/Radio commercials] of the biologics but it’s an entirely different reality when these patients taking biologics start showing up in emergency rooms around the world with life-threatening Lung Disorders and Fungal Infections.  Almost forget, these biologic drugs tend to also be very expensive.)

Antibiotics: Antibiotics are used for a variety of purposes in Crohn’s Disease because in some patients doctors believe there is a bacterial component somehow involved.  They are also used to treat bacterial overgrowth in the small intestine caused by stricture, fistulas, or surgery. Accordingly, your doctor may prescribe one or more of the following antibiotics: ampicillin, sulfonamide, cephalosporin, tetracycline, metronidazole [i.e., Flagyl]. (Personal Note:  For whatever reason, Flagyl has proven to be VERY effective for me during certain types of Crohn’s flare-ups.  In such instances, I typically take the antibiotic for 5-10 days and then get off of it.  I mention this because even the use of antibiotics in Crohn’s patients can have serious complications such as the prolonged use of Flagyl causing Pancreatitis. Again, I am NOT a Doctor but I have been in contact with many Crohn’s patients who have contracted Pancreatitis after significant use of Flagyl.  Amazingly, I have thus far avoided that nightmare.)

Anti-Diarrheal Medications & Pain Medications: These are drugs used routinely by Crohn’s patients for lifestyle purposes because no one wants to spend their days in pain or stuck in a bathroom.  Some patients even see specialty “Pain Management Physicians” to specifically treat their Crohn’s pain. Whatever the reason, you should always tell your gastroenterologist what medications you are taking because this information will help him or her in devising your overall medical treatment and it will also be an important piece of information your surgeon will want to know about.

Why so many Crohn’s Hospitalizations?

In answering Question 2 above, I tell people my doctors are always doing whatever is necessary to keep me off the operating table for the “disease recurrence” reasons described above.  The practical result in the 1980s and 1990s were increased hospitalizations although due to subsequent changes in healthcare and in the health insurance industry, I’m not so sure I would have been hospitalized as often or for as many days each time I was hospitalized if I got as many of the same type of Crohn’s flare-ups now in 2012.  In any event, since there are a variety of effective Crohn’s Disease medications, many of which I outlined above, I was thus often hospitalized to take these medications intravenously or in combinations/strengths which are not available outside the hospital.  In that regard, my gastroenterologist preferred seeing me in the hospital, sometimes for 20 days, if necessary, in an attempt to get me through a flare-up with the administration of medications rather than through surgical intervention and the likelihood of losing more of my intestines.  I’m not so sure health insurance companies would now agree with this safe and conservative approach since they like to “turn over” hospital beds like waiters turning over tables in a trendy restaurant to maximize their tip income.  In any event, doctors still follow the same conservative medication principles but more of the patient “response time” is done at the patient’s home due to the increased cost of being hospitalized. This harsh reality of a Crohn’s Disease flare-up adds to the feelings of loneliness and isolation which many Crohn’s patients unfortunately experience.

Finding the RIGHT Crohn’s Surgeon FOR YOU

I have gone through this short summary of Crohn’s Disease treatments and medications because I think a 1st time surgical Crohn’s patient should be familiar with the possible roads not taken and with all that is involved in leading up to Crohn’s surgery.  The 1st time surgical patient should also know that when they consult with a surgeon and their gastroenterologist thinks they need surgery, they are likely going to receive a recommendation of surgery since that is what surgeons do!  Of course, there are numerous exceptions to this but my point is that you want to make sure you’ve exhausted all possible medical treatments such that the only appropriate answer to your Crohn’s problem IS surgery.  If you’ve arrived at that point, then your only responsibility is to pick the surgeon who is right FOR YOU.  This means consideration of skill level, personality, understanding of your lifestyle and of the quality of life you are seeking by having the surgery.  You also need to go through a battery of diagnostic tests prior to the surgical consultation and your gastroenterologist will naturally order these tests in trying to help diagnose you.  It has been my experience that surgeons like to look at the actual Films from a CT Enterography and a GI Series.  Depending upon your medical/financial and health insurance situations, you may have to undergo additional testing.  Regardless, try to always obtain the original Films from each test so that the surgeon you ultimately choose can use them to successfully operate on you.

The Crohn’s Disease Surgeon – What to Expect

It’s difficult to recommend questions to ask a surgeon in a Crohn’s Disease case because with few exceptions every surgeon I’ve ever encountered has been SO confident and thorough that they leave little room for elaboration.  Sometimes, however,  this “confidence” can be construed as arrogance but I’ve also come to learn that with supreme surgical skills in Crohn’s cases comes a certain “self-assuredness” which can be off-putting if not expected.  For example, these surgeons bring up money and the cost of the surgery earlier in the doctor-patient consultation than in any other medical situation I’ve ever encountered.  Again, there’s nothing wrong with making sure you will be paid promptly for providing your services but such “directness” during a medical consultation may be a turnoff to you.  If that is the case, please at least take away from the encounter that Crohn’s surgery is SERIOUS BUSINESS.  The surgeon is being asked to basically take apart your insides and then put them back together sans the Crohn’s problems.  If, even with that understanding, you don’t feel comfortable with that particular surgeon, look elsewhere but don’t forget you will encounter some aspect of this self-assuredness in almost every surgical consultation.

The Crohn’s Disease Surgeon – What to Ask

Prior to actually meeting the surgeon for the 1st time, you should write out your questions so that you are organized and respectful of his or her time.  You should also have a written list of all the medications you are taking. Every surgeon will appreciate you doing this.  However, LISTEN to them first and even take notes before you ask your pointed questions as they are accustomed to the nervousness and anxiety of 1st time patients and thus they are usually overly  comprehensive in their initial explanation of the surgery.  Besides the obvious questions related to the surgery such as the possibility of doing your procedure via laparoscopic surgery (i.e., instead of cutting your entire torso open), the estimated recovery time and the amount of pain involved, you should inquire about post-operative care and about the subsequent limitations in your work and physical activities and when you can start instituting your dietary preferences. Ask about the most likely problems which will be encountered with your particular surgery and what the ramifications would be to you if such problems occurred.  Getting back to the pain issue, I would ask about the availability of a Pain Management Team at the Hospital if you are overly sensitive to post-operative pain because Crohn’s surgery can be among the most painful surgeries performed. (For example, a day or two after my 1st Crohn’s surgery, a kind nurse gave me a pillow on which she had written what I thought were “girly” drawings and she told me it was my “Cough Pillow.”  I thanked her for her thoughtfulness but put the Cough Pillow as far away from me as possible in case one of my macho buddies stopped by to see me and found me cuddled up asleep with this girly pillow.  Well, after the first inclination to cough hit me and I tried to cough but nearly passed out from the pain, that Cough Pillow and its girly drawings NEVER left my side and I didn’t care who saw me use it!)

Always keep in mind that this very confident surgeon may have to attend to you when you’ve had an unsuccessful surgery and he or she will need to “problem-solve” to get you better.  Confidence is great but empathy and adaptability are also important.  Be realistic with what you expect from the surgery and make sure you are both “on the same page” with your expectations and the surgeon’s capabilities/intentions.  Understand the various costs involved with the surgery such as the Surgeon, Anesthesia, Hospital, Laboratory, etc.  The Surgeon will not be able to break down the other costs but the office staff will probably know from whom you will be receiving medical bills. Lastly, if this is the surgeon you choose but the price is too high, ask if there is a payment plan available.  It may feel strange negotiating over life or life-style saving surgery but you must and that’s why I think it is also always best to bring along someone (e.g., your mother, brother, sister, best friend, etc.,) who will respectfully act as your Patient Advocate of sorts because you will certainly need one when you are incapacitated from the surgery.  More to the point, it is always easier having a “buffer” to ask about or respectfully demand those difficult items or issues which you don’t want to get into a heated conversation about with the surgeon who will be presiding over you at your most vulnerable condition.  Besides offering you moral support, that Patient Advocate can more easily objectify the “transaction” just as the “self-assured” surgeon can since he or she has presumably done this hundreds or thousands of times before.

Now, you are ready for surgery.  Good luck.

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Dilapidated Hospital Wing, Co-Ed Hallway Patient Bathrooms & “Sleepers” – Growing up Fast!

“Sleepers” is the kind of Film invented to be the Prize unknowingly sought by Channel Surfers everywhere so they can finally put down the TV Remote and know they have struck Gold. Like that feeling you get when you are with the person you’d choose above anyone else and when there is no other place you’d rather be than where you’re at, a couple of other Films come to mind that would similarly comfort me from a hard day of Life albeit for different reasons and/or depending upon my mood. These are Films like “Casablanca,” “Butch Cassidy & the Sundance Kid,” “Thief” with James Caan,“ “…And Justice for All,” “Absence of Malice,” “One on One” with Robbie Benson and “Stormy Monday” featuring a classic Tommy Lee Jones performance and underrated and presumably under-promoted acting by the Famed Musician, Sting. Besides the display of genuine entertainment and drama, these films remind me of less complicated times in my Life when chronic illness, medical bills, health-care paperwork, obtaining Prior Approvals and Crohn’s Disease did not have a dominating presence in my thought process or in my typical day or even hour.

But the first time I saw “Sleepers” I immediately related to it in a way I have never connected with a Movie. “Sleepers” was first a Book written by Lorenzo Carcaterra and then adapted into a Screenplay by Barry Levinson. Mr. Levinson also directed the Film which is focused on the lives of four fun-loving friends growing up in the Hell’s Kitchen section of New York City who through some rough neighborhood criminal pranks get sentenced in their Teens to more than one year in a notorious Reform School in upstate New York. However, the Reform School turns out to be no more than a corrupt Prison for budding Juvenile Delinquents and the four friends are forever changed by the beatings, humiliations, sexual molestations and abuses committed by the same Guards who are seemingly sworn to protect them. Then, thirteen years later, via a chance encounter with the most vicious of the Guards, played masterfully by Kevin Bacon, the boys, now as adults, devise a chance for revenge against both the Reform School and the Corrupt and Molesting Guards. Kevin Bacon is scarily convincing as a Child Predator who eventually pays for the despicable manner in which he treated these four tough, but still innocent, teenagers.

While the Film delicately conveys the despicable behavior by the Guards, its focus is more on how these four neighborhood buddies each managed to cope, survive and deal with their private nightmares and flashbacks of abuse and humiliation in their own way and come out the other side as adults. Their journeys are rough and their futures uncertain but in some ways I’ve always thought the Film reveals the wide spectrum of options one has when he or she is forced to live with such haunting, tormenting mental and physical pain. Robert De Niro plays the street-smart Neighborhood Priest who is all too familiar with the realities of the Reform School but there’s nothing he can do to stop what is being done to his “Boys” while they are there but he does manage to help them get their revenge. Among many, there is a memorable scene when Robert De Niro visits one of boys at the Reform School and in a classic Prison-like Visitor Room setting he has to discreetly and out of view of the Security Cameras tell this former mischievous altar boy not to cry and “let them see and get any satisfaction.” The boy in turn makes De Niro promise to keep his mother away from the Reform School because he doesn’t want her to see him in this setting or condition.

Thank God, I have never been Molested or Abused and thus I can’t relate to the deep-rooted Pain and Mental Anguish which I suppose can be triggered merely by a sound, sight or even a dream not to mention the actual sighting of your Abuser. But for some reason, the manner in which these four teenagers got through this horrific experience at the Reform School and nevertheless became adults (whether it was a true story or not) always reminds me of when I truly became a Man except it wasn’t Prison or Reform School which facilitated that journey; it was the Decrepit Wing at an otherwise outstanding New York City Hospital in which I had my First Crohn’s Disease surgery in 1988 when I was 25. I’m 48 years old as I write this, and for the life of me, I still can’t comprehend how such a fine Medical Facility housed its Post-Operative Gastroenterological Patients in this arguably barbaric environment.

I know, you are reading this hoping to be entertained but instead growing increasingly concerned about the grimness of this Blog Post but please trust me that you will soon be Laughing because with Pain and Suffering, at least when it happens to me, Laughter always ensues. For example, let’s start with the logic of this Hospital Wing’s Design whereby the conditions of the Patient Rooms were so sparse and minimalistic that the only Patient Bathrooms were in the hallway AND they were co-ed. Again, the Patient Bathrooms were not in the Patient Rooms so if you were forced to “try out” your newly connected Intestines you had to somehow collect yourself and get through the stifling pain of having your Torso sliced open, then prop yourself up and off the bed, all the while making sure you dragged and carried your IV Pole and Foley Catheter on your Journey to the aforementioned co-ed hallway bathroom. Most likely, however, you did not read the signals correctly from your newly-connected Intestines and you have to conduct this Chinese Fire Drill each time you feel the prospect of farting or defecating since passing gas and “dropping a deuce” are the only ways out of this Nightmare. I guess my dreams of having Robert Downey Jr. play “Me” if my Life were ever made into a Movie are never going to happen as Jason Bourne I am not.  By the way, there might also be a co-ed Waiting Line for the hallway bathroom and your Insides may not be “in synch” with such a snafu in your schedule. Look, not having unfettered access and/or always being within feet of a semi-clean, semi-private bathroom for a few days after abdominal surgery is like going to Afghanistan with only a Paint-Ball Gun for protection.  See what I meant about Laughter always ensuing when I interact with the Health-Care System?

At the time, it was the oldest Hospital Wing in New York City and I believe it was scheduled for demolition and remodeling but with my luck I am convinced they kept it open just for my first Abdominal Resection Surgery to toughen me up for my subsequent extreme and often bizarre Life experiences with Crohn’s Disease and Chronic Illness. What they say about “What Doesn’t Kill You Makes You Stronger” should be written on my Gravestone as this experience in 1988 almost “broke me” but instead it ironically prepared me for whatever was to happen to me in the ensuing 23 years with my Crohn’s Disease and its auto-immune side effects and complications which to-date has necessitated a total of approximately Twenty (20) Major Surgeries and in excess of Two Hundred (200) Hospitalizations.

Again, I’m not positive of the specifics as to why this broken-down Hospital Wing was still operational in one of the world’s most sophisticated Cities in the late 1980s but with that Decrepit Wing came top-notch surgeons and gastroenterologists so I simply listened to my Doctors and did as I was told. After all, how much of a factor could the actual medical facilities themselves play in the overall experience of undergoing and recuperating from major abdominal surgery? It was also 1988 when such cool music as “The Traveling Wilburys” and John Hiatt’s brilliant Album/CD “Slow Turning” were finally getting noticed by the mainstream and Steve Winwood’s “Roll With It” was heard every 5 minutes on FM Radio and Bobby Mcferrin kept reminding us, “Don’t Worry, Be Happy.” So, how much impact could a “place” have where all you had to do is lie down, give blood and try out your newly configured Intestines? More than you could ever imagine.

I had just been on a great vacation with a few buddies in Mexico and while the nights of Tequila and recklessly carousing with beautiful women inched me closer to my predestined run-in with my first Crohn’s Disease Surgery, I did possess a great tan and a classic washboard stomach. However, “The Situation” need not worry as I was never to see my washboards again except when they were re-created on a 12-year old boy who was an Child Actor featured in a local/regional late night TV Commercial playing a “typical” Crohn’s Disease Patient who needed to have a second Crohn’s Disease Resection Surgery only months after his first. The commercial was heart-breaking and intended to elicit sympathy for fund-raising purposes. Upon first seeing the commercial, I was hoping the sympathy and altruistic intentions were for the benefit of me losing my washboards but the pain medications soon wore off and I was able to grasp the big picture. In any event, yes, a Modeling Agency had contacted me after I was recommended to them by my Surgeon since the combination of my flat stomach with tan background made for a “beautiful scar.”

So, at this point, technically it appears that my experience at this horrific excuse for a Hospital was pretty decent as it did formally classify me as a Model, right? That said, when someone brags to their friends that they are dating a “Model” or tries to set You up with a Model for a Date, do you think they mean some 25 year-old guy who posed for his Crohn’s Disease Intestinal Resection Surgery Scar? Didn’t think so and with that introduction, welcome to my world where the “Devil’s Always in the Details,” progress is made painfully slow with 3 steps forward and then 2 steps back, I’m always making Lemonade out of Lemons and I’m never out of Lemons. Now we are getting to the crux of my Story and why watching the characters in “Sleepers” was like a Tutorial for me in terms of how I was to cope with the crazy way my Life would play out ever since I signed that first Modeling Contract, I mean, had my First Crohn’s Disease Surgery at the most archaic Hospital Wing in the late 1980s all the while when Steve Winwood’s “Roll With It” rang out from every Boom Box in Manhattan. Let’s just say that the upbeat and current coolness of Winwood’s song did not remotely match what I was experiencing at this Hospital Wing. It was like having Family dinner with the Cunninghams from TV’s “Happy Days” and then saying goodnight and traveling home to your 5th floor walk-up apartment in the Projects of the South Bronx.

Up until then I had been hospitalized several times for my Crohn’s Disease with medical treatment usually comprised of IV Dosages of Steroids targeted at staving off surgery because frequent recurrence is inherent in Crohn’s Disease such that a Spring Intestinal Resection Surgery in your Small Bowel might very well act up again at the new “connection points” (think Plumbing applied to your Intestines) and require identical surgical Small Bowel Resection treatment in the early days of that summer’s July. Therefore, barring extreme emergencies in which the Bowel is perforated or cut, Doctors try every trick in the book to simply buy time hoping the Crohn’s Disease or Colitis Flare-Up quiets down and often they are successful. They use a variety of methods to do this and the most dreaded one, at least from the Patient perspective, is the “NG Tube,” whereby a rather thick Tube is “passed through” your Nose and with your reluctant cooperation it is painfully “swallowed” deep into the Intestines so that once in the proper position it acts like a siphon and then because of physics, gravity and with the assistance of a Pump it starts to suck up everything that is putting pressure on the obstruction, block or kink in your Intestines and compiles it in a carefully measured and monitored output collection bottle. Sometimes it stays in the Patient for weeks, if necessary.

While the NG tube is by far the most demeaning and dreaded method used in treating dangerous Intestinal Obstructions, it is usually very effective in alleviating the pressure on your bowels which is causing so much of your pain and discomfort and thus in turn it can prevent surgery. Over the years I became familiar with the warning signs of an Intestinal obstruction or blockage and just like The Weather Channel noticing a “bow echo” and thus “danger” in a Spring Radar Impression above a small town somewhere in Missouri, my body senses these increasingly persistent and painful cramps and issues an “Intestinal Obstruction” Warning to my brain and then the safest way to survive unscathed is to regurgitate whatever I recently ate to alleviate any pressure on the blockage or kink. This is like going underground to a storm shelter to live through a fast-approaching deadly Tornado as soon as those bow echo findings are funneled through The National Weather Service’s Tornado Warning system and those Storm Sirens wail.

But when you try to vomit and nothing comes up because it’s already been digested too deep into your Intestines to regurgitate and it’s also not ready to come out the other end, that’s when it’s time to huddle up in the bathtub with your loved ones under a mattress (and please don’t forget about your pets) and pray for the best. I’m serious, just as the folks in the Midwest can relate from a Tornado perspective, if you can’t vomit and you can’t defecate and you have some type of obstruction or kink in your Intestines, it may be too late for even an NG Tube and you could be headed straight to the operating room. That’s because it is incredibly painful when Gas, Liquid or Food is “backed up” from an obstruction or kink as the body’s natural process of “Peristalsis” consistently moves everything down and out. If it comes up against a blockage or kink in what was once a normal passageway, the methodical nature of Peristalsis causes spasmodic Child Labor-like cramping pains that intensify until you either pass out from the pain or you possibly perforate your intestine. Just think of a terrible car accident that causes a massive traffic jam then imagine the impatient cars sitting in traffic not wanting to wait for the “all clear” and they continue moving forward crashing into police cars and the other law-obeying drivers. In real life, that just doesn’t happen. In Crohn’s Disease Life, however, Peristalsis knows of no bounds and keeps things moving with the aim of passing through that kink or obstruction.

I used the term “demeaning” above in association with a possibly life-saving tool such as an NG Tube because as you move your Head ever so slightly you feel the NG Tube pull you like a leash or muzzle on a dog and that feeling of being led around by a tube strategically placed inside your intestines and having no freedom of movement can be psychologically demoralizing and leave you feeling like the horse, “Secretariat,” wearing a harness but being severely constrained without the beautiful countryside and green pastures to roam free. All dressed up and nowhere to go. I have seen many Patients remove their NG Tube out of sheer frustration and over their Doctor’s objections just to save themselves from literally going crazy. Like being slapped in the face, an NG Tube often elicits a primal reaction or one builds up to a boil when such a confining restraint is so close to your eyes that it makes you feel like you are a Prisoner in your own body despite it being there to help you. You know you are free to leave the Hospital at any time but you also know you can’t make it on your own on the outside and that realization is stronger than any set of handcuffs. Once a Patient realizes his complete vulnerability in the Hospital due to the necessity of treatments like an NG Tube, he or she initially gets frightened by the lack of control over their own fate. But, once the Patient is able to “push through” this initial absolute fright, the vulnerability aspect is suppressed and the focus shifts to: “What do I need to do to get better so I can get out of this place?” That is a step in the right direction but it’s easier said than done as you will read below.

Clearly, it takes a tremendous amount of mental discipline to tolerate these almost ancient methods of treating a chronic illness such as Crohn’s Disease. It is perhaps equally frustrating to Patients and to their Families and Friends that except for the advent of much better diagnostic tests and possibly more “immediate” effective Crohn’s Disease medications (I am careful to point out the “immediate” part because the long-term side effects of these drugs are still being studied as they can, and have, caused very serious and disabling medical and immune system problems only a few years after Patients start taking them), not much has changed in treating Crohn’s Disease from 1988 through 2011. It pains me to even write that but it’s true. This is eerily similar to the slow progress meteorologists are having in protecting people from Deadly Tornadoes despite some advancements in predictability and advance warning times. It is these kinds of harsh realities which the characters in “Sleepers” help me confront but the Film wasn’t made until 1996, the Book had come out in 1995 and I was about to go through a life-changing experience in 1988! What to do? I can’t help but find that complete lack of timing hysterical and it is accurately demonstrative of the comical circumstances I have encountered throughout my Life. If Ralph Kramden had Crohn’s Disease, he’d be me. But back to the Story, who would have thought that co-ed hallway Patient bathrooms would have such a profound effect upon me?

Patients with incurable Digestive Tract Auto-Immune Illnesses are vulnerable to kinks or narrowing of the Intestines because their body’s immune system goes into overdrive and starts to attack itself. If I could only talk to my immune system and say, “Schmuck, we’re golden, there is nothing to fight so just chill and watch the Knicks game,” all would be fine but instead this misguided immune system causes an Inflammatory Effect in the Intestines and when the walls of the Bowel get inflamed, the passageway for Gas, Liquid or Food is significantly narrowed. When the Inflammation is so intense that it swells to totally close the Intestinal passageway, you then have an Obstruction. As the Peristalsis continues to push downward after having an Obstruction, it can “push through” the walls of the Intestine and that could cause a Perforation in your Intestines and in most cases only immediate Surgery by a skilled Surgeon can save your Life. Those are the essential ground rules you need to understand in order to grasp what transpired in 1988 after my first Crohn’s Disease Surgery and how I grew up fast as a result. Again, Lemonade out of Lemons and three steps forward, two steps back.

When you are post-operative after Abdominal Surgery, your Bathroom “accomplishments” are the only tangible measurements of success, recovery and then Discharge. More specifically, before eating or drinking anything, a Patient must first pass gas and then after having his or her diet advanced to solid foods, a bowel movement must be witnessed as a result thereof. This process is not an exact science since everyone’s body is different and the Peristalsis Process is also slowed down by both the Narcotics you need to take to offset the Surgical Pain and by the level or lack thereof of your activity. The more you move around and get things “giggling,” the better your prospects for farting and moving up the success chain. The catch, however, is that after the surgery you aren’t exactly looking for Pick-Up Basketball Games with your fellow Patients. This is one of the reasons why Doctors tell you to get out of bed as soon as possible after surgery even if only to sit in a chair to watch TV. In a perfect world you wouldn’t take any Narcotics and just hope that your body naturally finds its rhythm but getting your Torso cut open is quite painful so this is simply a reality which Doctors accept but carefully monitor.

I’m trying not to be too graphic here but it can become quite intense after abdominal surgery when you have not eaten or drunk anything but ice chips for a few days simply because you’ve not been able to Fart. You start asking other Patients who’ve been moved up to eating Jello because they farted without incidence to their newly connected Intestines (but they’ve yet to have a bowel movement otherwise they would be eating more solid foods) and you try to figure out what they did to commence firing. You even consider bribing your Nurse with $100 to have her testify as to the sound and fury of your “Break-Through Fart.” But knowing that you might need a more important piece of manufactured evidence for discharge purposes, you decide to wait, do nothing and “lie in the tall grass.” Surely something more important will come along for that $100.

To the Hospital Patient Visitor these seem like ridiculous issues and questions but after Intestinal Surgery your insides are like that of a new baby’s. To that end, if you’ve ever wondered why babies cry so much it is because their insides are super-sensitive with painful cramps and gas as a result of eating and trying to digest even a tiny portion of baby food. Like babies, you also don’t know what will come out the other end when you get that familiar urge to release this gas and hopefully alleviate the most painful cramps short of child labor. That said, the first few days you are post-operative are so painful that besides the Torso and Muscle Surgical Pain, you actually feel every tiny air bubble which moves slowly from your mouth to your anus and it could take days for these items to make their way through your system. It is a grueling process but one which you must experience in order to indoctrinate your intestines to their new alignment. Nevertheless, you root for these air bubbles to convert into substantive farts because then the pain would have been worth it as the Doctors can then start advancing your diet.

But after a few days of no action, you start to actually get jealous of other Patients on the Floor who are lying in bed enjoying their first meal of solid food as they obviously have graduated from Fart to Bowel Movement and by analogy Jello to a normal low residue but all important Solid Food diet. That’s when the veteran Nurses start giving you “tips” on how to speed up mother nature just like cagey veteran major league baseball players giving you advice on how to break out of a brutal O for 30 Summer Batting Slump. Having nothing to lose, you listen and then slowly (and painfully) try to get out of bed and walk as much as possible. You can’t go very far and don’t forget you are also dragging along an IV Pole and a Foley Catheter (this is inserted directly into your penis or vagina while you are under anesthesia to capture all of your urine so you can rest the first few days after surgery since getting out of bed to go to the bathroom is too painful during the period immediately following the surgery) and you might even be sporting an NG Tube. While untangling tubes, making sure the IV line in your arm is secure and always maintaining the proper distance for the Foley Catheter not to “pull” on your private parts, you must also try to keep your eye on that waiting line outside the co-ed bathroom just in case your Nurse’s tips were spot-on. Trust me, after being attached to these three contraptions and being forced to repeatedly walk around a Patient hallway with them while simultaneously protecting your turn in line at the hallway’s bathroom, you will never complain about wearing formal clothes to Sunday Family Dinners.

The good news is that if your Nurse was right, you will start to get severe pain as the gas moves down into the firing chamber and the image of lying in bed enjoying your first cup of Jello and then hopefully your first solid meal gets you through those intense and unrelenting cramps. Real or not, just the prospect of Farting forces you to slowly re-direct your three (3) transport companions to that one (1) hallway co-ed bathroom – just in case. You can try to be cool about it in case you run into an interesting person on line at the bathroom but I learned quickly that dignity left that Dilapidated Hospital Wing as soon as they put the Identification Band on my wrist. The most you can hope for is to literally “keep your shit together.” The bad news is that your Nurse was right but the long line at the bathroom is not exactly in synch with your internal constitution. This creates a bizarre site for the Patients’ Visitors who watch this bathroom line form and then get entertained by the creative gesticulations of the Patients waiting in line who are trying to either “keep their shit together” by clinching their butts closed or they are attempting to ensure success by sticking them out hoping the changes in latitude will provoke groundbreaking changes once they get inside that bathroom. This I can see Robert Downey Jr. doing.

My Mom and Dad visited me every day and Close Friends would also come to help with my spirits but until I farted I was pre-occupied and felt as if I was in some weird place of almost solitary confinement-like madness. It’s very difficult to concentrate on anything else when your entire fate is predicated on the otherwise normal and unremarkable bodily functions of Farting and producing a bowel movement. There was no way to escape this subject matter anywhere on the Hospital Floor. For example, while doing my daily walk around the Floor, I would exchange pleasantries with other Patients with amicable Nods and articulated salutations of “Hellos” and “How you doin’?” but we were each really centered on getting Intel on the other and whether or not we had farting or had a bowel movement. The funniest part was always the comments made by the Visitors who would usually be accompanying the Patients on these walks as they wanted to fit in and be social. Typically, I’d make eye contact with a fellow Patient trying to walk with his wife and he’d nod at me and then look down at the ground in a dejected sort of manner as if he was the coach of the little league baseball team which had just lost its town’s World Series. But then he’d glance back up at me and say, “I thought I had one this morning but I moved the wrong way in the bed and it just disappeared.” I thought that was funny until his very nice wife would move in closer to me, as if she didn’t want other people to hear what might be embarrassing words coming from her mouth, and almost in a whisper she said, “He’s gonna fart today, I can feel it.”

It hurt so much to laugh but those hallway conversations were priceless. I didn’t want to be rude and I couldn’t move very quickly but I’d always manage to get back to my Patient room and have a belly laugh with my Dad as he was great at keeping a straight face and then making me crack up as he recounted these bizarre interactions with precise detail. But the truth of the matter was that I needed to fart as well and Life as I knew it could never be the same until my most basic of bodily functions was occurring smoothly. While my Family understood my bizarre existence inside that Hospital Wing, a few friends during this Prison-like hospitalization had to stop coming to visit during this pre-fart stage because they were so grossed out by the entire Floor being obsessed with: whether or not they farted; how they farted; was it positional; did it count if it happened during sleep; etc. They also overheard conversations in these hallway bathroom lines that must have seemed “Twilight Zone-like.” I never blamed them and actually since this experience I usually don’t permit any Visitors until I am past this very painful part of the post-operative process where gas and food are ramming each other like bumper-cars inside my intestines. The uncertainly, vulnerability and actual act of carefully getting out of bed but rushing to the bathroom could create life-lasting images that I wouldn’t want anyone to see. And as if things on this Hospital Floor weren’t weird enough, an almost surreal atmosphere was added when some Nurses advocated going through the physical motions of going to the bathroom despite not having the physical urge to do so as a way to trick your body in an attempt to utilize “Method Acting” to get the job down. Can you imagine intelligent adults in Patient Gowns standing in line for a hallway bathroom asking one another how best to position themselves in their bed to commence farting? What about Patients waiting in line for a hallway bathroom when they don’t have the urge to actually use the bathroom but the Al Pacino in them was hopefully going to create a miracle bowel movement? I never blamed my Friends for taking a respite because my situation inside that Hospital Wing was getting more bizarre by the day.

Eventually the human body cooperates and the Patient’s diet is slowly increased until he or she has a normal bowel movement. This is akin to convincing the Parole Board that you are ready to be discharged. However, the Parole Board at the Hospital does not take mere words as evidence of defecation success. They require you to capture a part of your Bowel Movement in a Hat-like Specimen Container which you’d have to place in the toilet upon anticipation of said Bowel Movement. Normally that is easy to facilitate but after abdominal surgery things move unpredictably, fast or slow and it can be extremely challenging to hit the target or to do so in a timely or consistent manner. So, now that my Friends had decided to come back to visit once I told them on the phone that, “Houston, We Have Liftoff” (I am so glad Facebook wasn’t around then), I was now walking down the hallway carrying this Specimen Hat praying that the Jello and Hospital Meat Loaf I ate had somehow come together inside me and formed into what would become my “Opening Statement” as I begged to be Discharged. However, upon learning of the rather gross responsibilities still before me, my Friends came by to give me the New York Post and said they’d do anything in the world for me but it would have to be after I “got my shit together.” We laughed, they left and I cried. Yes, I cried. It wasn’t anything they said and it certainly wasn’t anything they did, for they were, and are, TERRIFIC, but I was now a Member of a Club in which I didn’t want to be a Member nor did I want to Join.  I had a serious Chronic Illness and possibly from here on out, my Life was going to be very different than that of my Family Members and Friends. I started to wonder if and when they had that same revelation about me? We all knew I had Crohn’s Disease for a few years but this was the first time it completely disabled me. If that disabling experience of this chronic illness was going to be anything like this 1988 Hospital Wing ordeal, what would my future be like if I had to ever go through this ordeal again? Would people still visit me? Would they still want to be my Friend?  Would I remain sane?

In retrospect, I went through some very funny situations in 1988 at this decrepit Hospital Wing but it sure wasn’t funny while I was there as with each passing day I got more in touch with how vulnerable I was and I cried myself to sleep every night. I had never felt more compromised in my entire Life and there was nothing anyone but the Doctors and Nurses could do for me. I felt demeaned by the Health-Care Process especially at this horrific facility. Mind you, no Nurse or Doctor was ever disrespectful to me but the co-ed hallway Patient bathrooms were disgusting and despicable. The foreseeability and logical connection between advancement of Diet and passing gas and then having a bowel movement made the experience unnecessarily demeaning. Given the nature of the Surgery and the increased importance of using a clean and semi-private bathroom, I was appalled that Patients could be treated in such a cavalier manner. I was 25 at the time and it wasn’t like my girlfriend or parents could stay the night in the hospital room with me but I came close to asking them because I had witnessed some strange events during the nighttime at the Hospital when it seemed the hospital staff was more relaxed about everything.  Back then and at THIS Facility, let’s just say that if you are hospitalized there and suffered complications while there, you had to pray that they happened during the daytime.

I was probably wrong for thinking this because as I was to learn through subsequent hospital stays, I am the biggest fan of Nurses and I think they are the Key to our Health-Care System and THEY and only THEY provide Patients with the Peace of Mind of “Continuity of Care.” But at this particular out-dated Hospital Wing, I was actually afraid to fall asleep for fear that the Nurses would forget about me, that’s how over-worked and, at times, apathetic they seemed.  I was shocked by the almost inhumane and uncaring atmosphere after having my entire Torso sliced open. I couldn’t believe that these people around me didn’t feel my pain. In that regard, asking for medication was a joke as the Nurses were so overworked and responsible for way too many Patients that hitting the Nurse Call Button asking for your pain medication at the time it was due was more like an Under/Over proposition in Las Vegas and the Over would always win.

While waiting for my medication, I would be in tears for an hour or so with only the comfort of my Mom or Dad delicately rubbing my back as my abdominal wound ragged red hot pain. Finally, the Nurse would come in with the medication and as sweet as she could possibly communicate her concern for my welfare, she’d simply say she was doing the best she could. Occasionally, I would get a Nursing Assistant who would go way beyond her call of duty and make me a “Cough Pillow.” I had no idea what that was until I had my first urge to clear my throat or cough. OMG – the pain from initiating movement of the muscles that were cut during the Surgery brought tears to my eyes and made me feel as if I’d never cough again. But the Pillow cushioned the force and eventually I eased back into coughing. But I was so shook up by what I had seen at this Hospital Wing, both day and night, as per my Doctor’s advice, we wound up hiring a Private Nurse for the subsequent days or week or so I was post-op because after what my parents had witnessed they didn’t want me to also be unnecessarily mentally scarred from this experience as even they couldn’t bear to see me suffer and they hadn’t seen the worst of it.  In many ways, my parents felt my pain more than I did and I can’t imagine what it must be like to see your 25-year old macho, athletic child reduced to some stick figure lying in a bed horrified by his current existence. Even writing this some 23 years later, I have a hard time conveying my thoughts without getting emotional. I will admit, however, that I NEVER feel sorry for myself nor do I ever want people to feel sorry for me and in looking back a few paragraphs I could see that pre-1988 my resolve in battling chronic illness and Crohn’s Disease was not yet formed. I am embarrassed about that but that’s how we learn and it took a few patient and perceptive health-care professionals to help me build up the mettle to confront my future with bravery and without care for the hospital aesthetics I complain about above.

A few years later I saw “Sleepers” and it always reminded me of how I went into this Old Hospital Wing as a Boy and a few months after processing all I had seen there I ultimately became a Man who had to cope with what might be a chronic medical condition. Looking back, there were likely days when my surroundings at this Hospital Wing in 1988 caused me to “shut down” from getting so spooked. But little did I know that I was building up a tolerance for subsequently, and repeatedly, having to check into Hospitals with a suitcase for a hospitalization that might be for 4 days or 4 weeks. Little did I know that I would become so confident in the manner in which I handled myself that I wrote a Book to help others called, “Confessions of a Professional Hospital Patient.” As elaborated in a previous Post, the Book landed me on many TV and Radio Shows and continues to be a success to this day but I’m most proud of the fact that after seeing a Film like “Sleepers,” I ultimately and independently, but with the Loving Counsel and Support of my Family and Friends, chose a Coping Mechanism of Candor, Resiliency and Fortitude to continue to try and live my Life the way I intended to do so. I also learned that the length of my hospital stays didn’t much matter. What did matter was that I just had to do the time to get better so I could leave. Finally, and as my girlfriend in law school a few years later would tell me, the fact that I had Crohn’s Disease would never affect my future relationships but how I handled my Crohn’s Disease would. Truer words have never been spoken to me about Chronic Illness.

Since that hospital stay in 1988 and up until May, 2011, I continue to have Major Surgeries related to my Crohn’s Disease. I’ve stated the extraordinary numbers above and the Medical Facilities have been all over the United States and a few on Cruise Ships and there have even been ER Visits in a few Foreign Countries.  I’m proud that I’ve never let my chronic illness confine me to a certain locale for fear of  leaving my doctors, family, friends or support system.   As much as the 1988 Hospital stay with the co-ed hallway Patient bathrooms shook me to my core, it made me grow up and FAST. In other words and by way of example, I could have never moved out to Los Angeles, CA a few years ago to pursue my dream of making movies had I not been toughened up by the 1988 experience.  I was 25 years-old but I was a sheltered 25. A Hospital is a sterile environment in both practice and in attitude because there’s no room for emotion in quality medical care. That revelation took me a while to process, as it does many other people, as we all see a Hospital like it’s a TV show where everyone gets diagnosed correctly, medications do what they are supposed to and the hospital staff has sex all over the joint. But that 1988 Dilapidated Hospital Wing helped me see Health-Care as a Process undertaken by dedicated people doing the best they can with the resources they have.

If I characterized any of the Medical Professionals a bit harshly in this Post, I apologize but please understand that I never took anything personally as I knew the Facility was way past its expiration date and thus I could only assume that Nurses were being over-worked, under-staffed and sometimes their frustration was so palpable I could sense it coming from the air vents on the Hospital Floor. I think I write about it and freely discuss it, although this is the first time I have re-examined that 1988 experience in many years, because I don’t want the experience to lie dormant in my head so that when a certain smell or sound like Steve Winwood’s “Roll With it” brings me back there, I will weaken. I can’t afford to do that so I concentrate on learning all I can from each experience and sharing what I know so that some other 25 year-old won’t have to go through what I did. Then I can move forward with more resolve, fortitude, confidence and strength. Whatever that 1988 experience was, it forced me to grow up quickly and I needed to with all the hospitalizations which were in my future and I am thankful that I at least had my Family and Friends to help me through the transformation from Boy to Man. I find it also ironic that while this was one of my biggest challenges and also most difficult memories, it was, at times, the most fun I had hanging out with my Dad who passed away in 2008.   My Dad was very funny but he also was able to use his great sense of humor as a defensive mechanism and he tried to shield me from what was happening by laughing with me until the belly laughs caused too much incisional pain.  I think he came to understand what my illness was about during that 1988 hospital stay and it formed a mutual respect between us that never changed despite us having our differences over the years.

Finally, some might conclude after reading this Post that when I watch “Sleepers” I get depressed or I am reminded of the mental anguish I went through in 1988 at this bizarre Hospital Wing. Please trust that nothing could be further from the truth and if that were the case, why in the world would I spend so much time writing this Post? Please think about that.  When I watch the movie “Sleepers,” whether it is a true story or not, I am reminded of the power and control we each have over our own lives and that despite all that happens to us it is our option to be happy or sad. No matter how bad the pain or humiliation, I am reminded that pain ends and there are good times to be celebrated with Family and Friends. Life is short and these good times must be acknowledged to at least offset the trying times. Watching “Sleepers” is like a fun exercise in which I marvel at how I’ve managed to stay relatively sane after all I’ve been through. I also think about the Belly Laughs with my Dad.  That is cause for Smiling and Celebration.