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

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

  1. Wow, I just read this and found it not only very informative but you maintain a sense of humor in your writing. Our youngest son, who will be 42 on July 5th has had crohns since Jan of 2000.
    It came on suddenly two years after a heart attack of unknown reasons.
    He has had two major crohns surgeries, hospital stays too numerous to mention for blockages, some as long as two weeks. He is on many meds, has tried remicade but was allergic to it.
    He became addicted to pain meds from the two surgeries so much so that he had to go to NA treatment and to weekly meetings. So that now when he is hospitalized he must try to either not be on pain meds at all or to be monitored and go home with none.
    Your description of the “underwear” issue described his stays of this past winter. I would buy more, bring them in and he would call and say, sorry, I need more.
    What is not a funny disease at all, for anyone involved, sounds funny to others. Your way of addressing it and informing others is frankly a godsend. I thank you for this. I will share it with my son. Here is hoping it will be awhile before your next stay. Pat

  2. Pat:

    Thank you so much for reading the rather long Blog entry. My heart aches for your son and your family as Crohn’s Disease is a pervasive illness which can get a hold of your life and never let go. I never thought it could happen to me but it has so all I do now is share my rather extreme experiences to help others like yourself. Hopefully by reading about my experiences you can all laugh a little bit and smile about how challenging the illness is. Given your son’s situation, he might also get a kick out of my Book, “Confessions of a Professional Hospital Patient,” because it is an even funnier and more detailed description of life both IN and OUT of the Hospital with Crohn’s Disease. Regardless, I appreciate your kind words and please spread the word about my Blog 🙂 THANKS

  3. It’s a credit to your writing that you can make someone see the humour in that lengthy round of pain and hospital issues.. Good thing that this surgeon actually respected your experience. It sounds s though you prefer to be all ready for anything so it’s great you could deal with the unpreparedness also.
    It was easy to see from your tweets that you were doing your best to get it over with

  4. Charlie Steinberg

    Hi Michael,

    I read your blog entry. What can I say? No one should have to go through the kinds of ordeals that you have experienced. You are one brave guy.

    We think of you often and hope and pray that you will not have to endure any more hospital stays.

    Best regards,
    Charlie

  5. You have all, and more, of the qualifications of a medical reporter for a major network! Handsome AND brilliant.Go for it.

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