Tag Archives: “Confessions of a Professional Hospital Patient”

Partnership with Patients Summit & “Humira” position

Thanks to being awarded a “Travel Scholarship” from the Society for Participatory Medicine based on my contributions to the world of Health Care Social Media, I will be attending the “Partnership with Patients Summit” in Kansas City, Missouri from Friday, Sept 21, 2012 through Sunday, September 23, 2012.  I am honored and humbled by receiving such an Award and I look forward to sharing all that I see and hear by reporting about it on my Blog upon my return.  I intend to bring my Flip HD Camera and trusted Tripod so that I can record daily summaries of the day’s events.

On an unrelated note, yesterday I recorded a One (1) minute Video entitled: “The Drug “Humira” – Miracle Drug or Snake Oil?” utilizing the new wonderful technology from “Vsnap.com.”  Several people presently taking Humira, and getting great results with it, seemed to take offense at my characterization of Humira as “Snake Oil” or as an ineffective drug for Crohn’s Disease.  Granted, the title of the video is rather “dramatic,” but the content of the video is simply MY opinion based on MY experiences and on the experiences of MANY Crohn’s Patients who have sought me out to commiserate.

MY issues with Humira are numerous, especially in light of the drug being approved last week by The European Union for treatment of Severe Crohn’s Disease.  For the purposes of simplicity, I am listing some of them below.  That said, I acknowledge that Humira DOES WORK in treating Crohn’s Disease BUT I am concerned that longer term use of the drug (such as in MY case) will reveal many more negative outcomes and dangerous side effects than are reflected in the sample sizes for which Abbott Laboratories, the manufacturer of Humira, received global approval.

As I was one of the early patients taking Anti-TNF Agent drugs who had to quickly “graduate” from Remicade to Humira and then to Cimzia, I am concerned that the almost fatal (and often on-going) side effects I experienced might occur more frequently than first thought, particularly as these drugs are taken by patients for longer periods of time.  Accordingly, please understand that I write and record about this Humira issue because I want to keep Researchers and Pharmaceutical Companies on their toes, as the pressing need of patients doesn’t always align up with the profit-motives of Pharmaceutical Companies.  Moreover, I feel compelled to speak out due to the misleading Humira television commercials Abbott Laboratories targets at a captive patient audience desperate to get their lives back from these formidable autoimmune diseases.  Some would say I am a cynic but others would conclude I am trying to be realistic.  Regardless, please trust that, in the immortal words of Singer/Songwriter Elvis Costello, “My Aim is True.”

  1. How could ONE (1) Drug such as Humira claim to be “THE” effective Treatment drug in SIX (6) Different autoimmune serious diseases such as:  Moderate to Severe Rheumatoid Arthritis; Moderate to Severe Chronic Plaque Psoriasis; Moderate to Severe Crohn’s Disease; Ankylosing Spondylitis; Psoriatic Arthritis; and Moderate to Severe Polyarticular Juvenile Idiopathic Arthritis ?
  2. The drug is marketed in the United States to patients via television commercials which focus on “regaining back a certain lifestyle” very much like the manner in which “Erectile Dysfunction” drugs are marketed.  The very serious medical disclaimers are read aloud in a quick and monotone fashion, which I imagine is legally sufficient, but I contend is morally INSUFFICIENT because the commercial then focuses the patient’s eye on the VIDEO “wants” of patients (myself included) instead of the patient’s NEEDS.  Given the increasing number of ineffective usages of Humira (I am extrapolating based on the overall increasing number of patients using Humira) and the severity of the side effect cases, shouldn’t these television advertisements be regulated more carefully so that they better represent the risks associated with taking Humira?
  3. Why is Humira advertised DIRECTLY to patients?  As a Crohn’s Disease patient with NO CHOICE, having run out of drugs to take to treat my Crohn’s and keep me out of the hospital, and thus desperate for a cure or even a treatment that gives me back some semblance of a normal lifestyle, an argument can be made that Abbott Laboratories, the manufacturers of Humira, are manipulating a captive audience.   When you go and ask your doctor to put you on Humira based on seeing these television commercials, it is likely you won’t “hear” the medical disclaimers being carefully told to you by your doctor because all you can “see” is your old “active self” doing the things you love, when you want to do them.  I have a problem with this type of manipulation when the outcome “COULD” be the exact opposite or even worse.
  4. Since Humira DOES WORK in MANY CROHN’S DISEASE CASES, it pains me to write about these issues and in doing so possibly dashing the hopes of these hopeful patients, but someone needs to speak out because I know MANY Crohn’s Disease doctors who are very frustrated and disappointed with both the long-term success of these Anti-TNF Agent drugs and their intense and pervasive side effects.  As for the patients taking Humira now, or considering doing so because they have no choice, they should simply view my comments as a Cautionary Tale; nothing more; nothing less.  But because Crohn’s Disease is not a “sexy” disease, I am so worried that research money will not be adequate to proceed further and therefore patients will have to settle for treatment drugs based on Anti-TNF Agent ideology.  I hope my fellow Crohn’s Disease patients understand my intentions in this regard.

What Happened to Me b/c of Humira

If you’ve read my Blog or followed me on Twitter, you are probably familiar with what happened to me after taking Humira and Cimzia for a significant period of time.  In short, they worked for a while but then I developed severe Respiratory and severe Joint Pain side effects which forced me to stop taking them.  A few months later I began to come down with intermittent fevers of 105 often accompanied by Bronchitis or Pneumonia.  Eventually, I became so sick that I had to be hospitalized for what the doctors then thought was drug-resistant Pneumonia.  After several hospitalizations, I developed the additional symptom of severe Shortness of Breath and that prompted a CT Scan. The CT Scan showed accumulated severe damage to my lungs which the Thoracic Surgeon thought was consistent with Lung Cancer even though I have been a non-smoker my entire life of 49 years.  They performed a surgical biopsy because they wanted to obtain samples of my lung while “I was still able to breathe on my own,” that’s how grave a situation they thought I was in.  Thankfully, I did not have Lung Cancer but instead had an often fatal Lung Condition called Bronchiolitis Obliterans with Organizing Pneumonia or “BOOP.”

My Crohn’s doctors recognized the connection of the BOOP to the Anti-TNF Agent drugs Humira and Cimzia and I began treatment for the BOOP with 60 mgs of Prednisone daily with the intent to eventually taper down over the course of ONE (1) year.  That is the standard, and ONLY successful, treatment for BOOP.  However, after 4 months or so, I still had severe shortness of breath and had gained 55 pounds.  My Crohn’s doctor discontinued the Prednisone and, after consulting with several other doctors, put me on the Chemotherapy drug, Cytoxan.  The Cytoxan worked on the BOOP after a few monthly infusions but then my Crohn’s Disease started to act up after being in remission for several years.  A few months later my Crohn’s became so active I was forced to have my 20th extensive intestional surgery to address it.  I was in the hospital for 17 days and in addition to the Crohn’s surgery, I had to deal with several other SERIOUS complications from the treatment for BOOP, which resulted from the Anti-TNF Agent drugs (e.g. Heart and Testosterone issues).

Since taking the Anti-TNF Agent drugs, I’ve also noticed that run-of-the-mill Seasonal Allergies seem to trigger such an exaggerated immune system response that they CRIPPLE ME.  That might sound strange emanating from typical  watery eyes, sinus pain and the sniffles but I get so lethargic it is as if I’m in the 14th round of a 15th round Boxing Match with boxing legend Mike Tyson and I am doing all I can just to stand on my two (2) feet.  Additionally, this lethargic feeling is often accompanied by Migraine Headaches so severe I can’t move an inch once I find a spot in the bedroom where I achieve total darkness and quiet.  I experienced much less severe versions of these symptoms once I was diagnosed with Crohn’s Disease but after I began taking Remicade, Humira and then Cimzia, these unpredictable “episodes” became appreciably worse and ultimately, Disabling.

Again, mine is a cautionary tale but I’m not that lucky or unlucky to be that 1 in 10,000 or so patients who gets BOOP from Humira.  I have had Crohn’s Disease for almost 30 years and I can honestly say that my illness is MUCH MORE PERVASIVE since taking the Anti-TNF Agent drugs.  It’s as if I made a deal with the devil to get Five (5) good years at the expense of a lifetime of bizarre, painful, disabling and increasingly serious and expensive side effects.  There you have it.  I hope you do GREAT on Humira.  But if you run into problems, please feel free to contact me, after 1st contacting your doctor. Good health to all.

If Crohn’s Disease don’t getcha, the drugs or the side effects will

Recently, I tweeted via @HospitalPatient:

Battling Crohn’s Disease is like trying 2 survive “The Perfect Storm” in a Raft. If the Disease don’t getcha’, the drugs or the side effects will!

The Tweet was re-tweeted by MANY people so I guess I accidentally stumbled into explaining what it feels like to live with, and manage, a chronic illness like Crohn’s Disease.  More importantly, this Tweet can be true of so many chronic and autoimmune illnesses.  But when you LOOK “okay” or “more than okay,” healthy people are “suspect.”  They may not say this at dinner when you have a pleasant evening as friends or as “friends of friends,” but they damn sure say it to their spouse before going to sleep and reviewing the evening’s events as I know I would, if I weren’t intimately familiar with Crohn’s Disease for almost thirty (30) years.  More specifically, they might ask:  How could someone so smart and seemingly healthy-looking have so many medical problems?

I can’t speak for the many folks who battle other autoimmune chronic illnesses but with Crohn’s Disease and other “Inflammatory Bowel Diseases” (i.e. “IBD”), the progression from misdiagnosis to proper diagnosis to trying to manage it goes something like this based on MY personal experiences (and please pardon the “Vertical Bullet Points” but I think the progression of the Disease is more easily understood this way):

  • 20 years of age – You suddenly have severe and debilitating abdominal cramping, extreme and inexplicable lethargy and crippling knee pain coupled with doubts from loved ones who think you’re a hypochondriac despite you always being an energetic and insatiable athlete.  In college, these symptoms were synonymous with proud hangovers after memorable nights but for some reason you were always in the bathroom longer than everyone else.  The cramping was also so intense it brought tears to your eyes as you prayed for it to stop.  You switched to Vodka ‘cause it’s clear and uncomplicated, thinking that’d do the trick. Ergo, the need for Graduate School.
  • A few misdiagnoses by well-intended local doctors accompanied by painful experiments with various antibiotics only make the aforementioned symptoms worse.  Colds turn into Bronchitis more quickly and you become increasingly familiar with bathrooms and Health Insurance Claims forms.
  • The Journey to the Road to Proper Diagnosis might include a bizarre reaction to having all four (4) Wisdom Teeth pulled at one time.  Sure, your mouth blows up for a few days afterwards but when this continues to happen for 6 months after the dental surgery, there’s something wrong.  Seasonal allergies begin to make you so weak that you fall asleep during Sunday Family Dinner.  Your Dad yells at you for having bad manners but his words come out in slow motion because you are so “out of it.”  You try every possible over-the-counter allergy medication but nothing seems to work like it does for your friends or how it’s supposed to on the television commercials.  All you want to do is sleep and crawl into the fetal position to battle the abdominal cramps and repeat trips to the bathroom.
  • Some world renown expert suggests putting you in a hyperbaric chamber to recover from the dental surgery but everyone in your family thinks he’s nuts.  You’re beginning to feel ostracized from those you love because no one seems to understand the physical pain you are in. You learn how to spell “G-A-S-T-R-O-E-N-T-E-R-O-L-O-G-I-S-T.”  But he or she diagnoses you with what is tantamount to a “bad stomach” or “IBS,” Irritable Bowel Syndrome.  Still, your symptoms don’t change.
  • 24 years of age Trying to brush off what those around you refer to as “psychological,” you begin your career at some low-level office job.  One day they celebrate a colleague’s birthday with Flavored Popcorn.  You indulge even though popcorn doesn’t exactly “agree with you.”  30 minutes later the intense abdominal cramps start and this time they are increasing in intensity almost as if you are in child labor.  You go to the office bathroom so no one sees you grimace in pain as you try to manage the cramps which now make you feel like your stomach might literally explode.
  • Everything is foggy and you are in an ambulance on the way to a local hospital.   Someone at your job found you passed out on the bathroom floor.  The hospital admits you and loads you up on drugs to dull the pain.  Your family rushes to your aid feeling terrible that it wasn’t psychological after all.
  • After numerous painful and awkward diagnostic tests, the Gastroenterologist tells you and your Mom that you have a chronic, autoimmune and incurable digestive illness called “Crohn’s Disease.”  He gives you a pamphlet from the “Crohn’s & Colitis Foundation” which explains the symptoms. You read the list aloud and it’s like someone summarized your last year or so and called it “Crohn’s Disease.”  At first, it’s obviously bad news but strangely it becomes incredibly validating because when your family reads it, they no longer see you as the “Complainer.”  They see you as a young adult who now suffers from what could be a devastating disease.  The good news is that Crohn’s is a “broad spectrum” disease so things may not be so bad.
  • 25 years of age1988 – Your Mom gets you an appointment with “the best of the best” doctors who specialize in Crohn’s Disease.  He becomes your doctor for the next 30 years.  At first, he does whatever he could to stave off surgery but your “type” of Crohn’s Disease is “obstructive” and aggressive.  After numerous hospitalizations for intravenous medications, you soon require surgery to alleviate a life-threatening small bowel obstruction.  What about the broad spectrum?  For you, it was a broad spectrum of bullshit.
  • 1989 – In the early years with the disease, you go to business and law school but the first year of law school includes several hospitalizations and three (3) more surgeries.  The Dean calls you personally to respectfully ask you to take the year off to focus on your health.  Besides, you can’t pass the 1st year of law school without formally listening to the class lectures.  You ask for the cassettes.  The Dean is silent.  You do very well in law school and upon graduation you receive the 1st “Dean’s Award” for Unique and Outstanding contributions to the school and the student community.
  • 29 years of age1992 – You start to work and advance in your career but it seems that every step forward is accompanied by 3 steps back due to more hospitalizations and more surgeries. You only lose inches of small bowel during each surgery but with Crohn’s Disease, surgery begets more surgery.  Surgery also causes scar tissue or “adhesions” and eventually they grow to block your small bowel and you require even more surgery to fix this “mechanical” byproduct from a prior surgery.  The hospitalizations and surgeries start to pile up as do the co-payments.  Doing your annual tax return becomes a royal pain in the ass.
  • You form unique close friendships because you learn so much from what your friends try to do for you, when you can’t do for yourself.  By example, you learn how to be a great friend.  It takes a while to sink in, but you realize you’re lucky, but not in a materialistic manner. For you, friendships are the currency of life.  You become wise as the disease is simultaneously making you poor.  Employment decisions are increasingly influenced by the healthcare coverage offered.
  • 36 years of age1999 – You try to keep up athletically but your good intentions of shaping up wind up necessitating spine fusion surgery to repair a ruptured disc which is painfully misdiagnosed for six (6) months.  Again, many around you doubt your pain while lazy doctors toss your “negative” MRI films on the floor with proclamations that you are “making it up” to seek attention and drugs.  You cry at their insensitivity but it doesn’t stop you from getting answers, for such stifling back pain cannot be normal.  Sure enough, two (2) “discograms” confirm a ruptured disc and spine-fusion is the ONLY answer.  Numerous abdominal surgeries have made your back weak and Crohn’s has again caused expensive misery.  However, it’s also validation once again and now you know to NEVER doubt your body because you simply can’t ever underestimate the reach of what will be your life-long nemesis, Crohn’s Disease.
  • 1999 – 2001 - Your health insurance company only covers back surgeries emanating from MRI diagnoses; they view discograms as antiquated despite their sole existence to diagnose what MRI’s can’t.  Your folks float you the money for the back surgery and you appeal the health insurance company’s decision.  You lose; you appeal again.  You finally win and get awarded attorney’s fees.  You write a Book to help others learn from your experiences called, “Confessions of a Professional Hospital Patient.”  It gets you on NBC’s “Today Show.”  You date your physical therapist.  Life is returning to normal.
  • Your trusted Crohn’s Disease doctor starts trying varies medications called “Biologics” to slow the progress of your disease and each comes with side effects that would scare Dr. Kevorkian.  The cramping, myriad of bathroom issues and extreme lethargy goes away but soon anaphylactic drug reactions occur, stifling joint pain comes on like the randomness of a Voodoo Doll being pricked by the driver you accidentally cut off on the 405 out in Los Angeles.  Yes, your Crohn’s Disease is in check, but you begin to come down with increasingly serious cases of Bronchitis and Pneumonia.  You are hospitalized so many times, for so many things, you must chronicle it all in a Word document because no one would ever believe you without specific dates and details.
  • You work for yourself because no employer would understand and accept the randomness and pervasive effects of this chronic “digestive” disease.  The autoimmune aspects become more and more expansive and unpredictable as you age.  Due to the help of friends and family, you have some success and get back into the fast lane of merely trying to reach your professional potential.  You make Movies and practice Entertainment Law and fly back and forth between New Jersey and Los Angeles.  Life is good.   You remember what a former girlfriend told you and try to live by it: “Michael, your Crohn’s Disease will never come between us; but how you handle it will.”
  • 2005 – You move to Los Angeles, California, in part to more quickly pursue your professional potential for fear of being stymied at any moment by your disease, but also to prove to yourself that you can be independent of the disease, doctors and hospitals you grew accustomed to in New York and New Jersey.  It works for a while and Santa Monica, CA is heaven.  You meet some new “old friends.”  The hospitalizations still occur but they seem to be caused more by disease complications and side effects from treatment medications than by the disease itself.  For most people, that would be a bummer.  For you, it’s a vacation.
  • 2008 - Life marches on and soon your Dad passes away.  You take solace in the fact that at least he saw you happy when he came out to visit with your Mom and rode around Los Angeles with you in a convertible smiling and retelling stories about the last time he was out in “Cali” just prior to being drafted for the Korean War.  You head back to New Jersey to mourn his death and celebrate his life, but returning to Santa Monica, CA after the “Shiva” process starts a downward disease progression that will change your life, yet again.
  • You aren’t even sure it is safe to get on the flight back to Los Angeles because the pain in your gut is so severe but you figure it’s just the mourning for the passing of your Dad.   You make it back to Santa Monica, CA and unbeknownst to you; your small bowel is slowly being strangulated by some surgical material from a prior abdominal incisional hernia surgery. You call your West Coast Crohn’s doctor and make an appointment for the next day but you half-kidding tell him you may not make it through the night.  It’s probably a overly dramatic statement but after so many years of doing battle, you’d come to know your adversary like veteran top-ranked tennis pros facing off against each other for the 10th time at the US Open in Flushing Meadows, NY.
  • At 3 AM you wake up and feel like Marlon Brando’s “Vito Corleone” in “The Godfather” when he rolled over and died in his vegetable patch.  Your Santa Monica apartment is devoid of said vegetable patch so you settle for stumbling into some stand-up lamps and collapse.  You call an ambulance but while waiting assume you perforated your intestine, the final knock-out punch from your Crohn’s Disease.  You are a goner if the ambulance doesn’t arrive FAST.
  • 45 years of age 2008 – Not so FAST.  The ambulance arrives as if it were E-ZPass on the tollbooths saving James Caan’s “Sonny Corleone” character so he could hit the accelerator and drive on through the machine gun fire to live to fight another day, perhaps in “Godfather Part Two.” But it takes two (2) major surgeries and several hospitalizations to repair your strangulated small bowel. More adhesions arise and you also begin to experience “comprehensive” effects of being on those new “Biologics” Crohn’s Disease drugs called “Anti-TNF Agents” such as Remicade, Humira and Cimzia. You try to work but you either wind up in restaurant bathrooms for ridiculous periods of time (which ironically is often acceptable in LA because some wacky colleagues think you are using the bathroom for entirely different reasons!) or you are so weak some days you can’t get out of bed.  Since your work is also your social life, you have time to carve out a new path and begin sharing your experiences on various Health Care Social Media platforms to try and help others.
  • Just as you get accustomed to your role as a healthcare commentator, you have more to comment about as your small bowel again gets blocked by adhesions. Trying to avoid another surgery and numerous hospitalizations, you go on a “Liquids and Lollipops” diet.  Your ingenuity goes only so far and you wind up driving from Santa Monica, CA to Rochester, MN to be operated on at The Mayo Clinic.  It’s the summer and you think a drive across the country will do you good and also quench your desire to finally witness a harmless, picturesque tornado in the Plains that is visible from the highway but safely far away in vacant farmland.  It’s called making lemonade out of lemons.  The drive is beautiful but the unrelenting pain in your gut keeps you in some nice small Iowa highway-side town for three (3) days at a Best Western as the pain is so bad you can’t drive.  With nothing to do but lie in bed, watch cable television and wait for Raquel Welch or Angie Dickinson to knock on your door, you feel like an old-fashioned bank robber held up in some small safe town waiting for the Sheriff to pass through.  Having Crohn’s Disease will certainly let your mind wander.
  • 2010 – There was no tornado but you’re proud you keep making the best of the situation as the drive is something you’ll never forget; so was your Six-Week stay at The Mayo Clinic.  The adhesion surgery went well but you also had some other unrelated but very specific severe pain in and around your abdominal wall.  Unfortunately, you came across a surgeon who thought you were nuts and he was God.  He was mistaken on both counts.  You didn’t flinch and eventually got treated by a Mayo Clinic Gastroenterologist while recovering from the adhesion surgery.  While the doctors had the best of intentions and this other problem was palpable to the touch and visible as some sort of growth emanating from your abdomen, they wouldn’t listen to you when they diagnosed the pain as a flare-up of your Crohn’s and ordered you to begin an intensive course of intravenous steroids.
  • You respectfully refused because you learned a long time ago what was, and what was NOT, a direct body blow from your Crohn’s.  This was surely mechanical but nobody would listen to an experienced Crohn’s Disease patient who had never been wrong about his body.  You were then kicked out of The Mayo Clinic for refusing to follow their orders and treatment plan.  You cried at their obstinacy but as you had done in the past, you fought back to get answers.
  • You flew home to New Jersey and headed back to your New York Crohn’s Doctor of 30 years, PICC line in tow.  He’d figured out every nuance of your Crohn’s Disease so you were confident he and his colleagues at Mt. Sinai Hospital in New York could do everything The Mayo Clinic, for some reason, could, or would, not.
  • Prior to being admitted to Mt. Sinai Hospital, you received a Certified Letter from The Mayo Clinic effectively banning you from that fine medical institution FOR LIFE: “because of your actions which demonstrate a lack of trust with Mayo providers, a failure to follow a recommended treatment plan and abusive behavior toward our hospital staff.”
  • Your mother cried when she read that letter even through you knew you’d soon be vindicated.  That said, The Mayo Clinic Banishment Letter made you feel like a “leper” and even your Crohn’s Disease had never done that.  As for “abusive behavior” toward hospital staff, you were most polite and respectful except when they did not listen to you explain your symptoms.  Then you became simply a frustrated hospital patient who had been hospitalized far away from home, for almost 6 weeks.  What they call “abusive,” you objectively viewed as “frustrated.”  Potato, Patato.
  • Your Mayo Clinic frustrations were corroborated the first day at Mt. Sinai Hospital when an Endoscopic test apparently not available at The Mayo Clinic confirmed that your problem was purely mechanical and was NOT at all a Crohn’s Disease flare-up.  Had you followed The Mayo Clinic’s advice, you’d be substantially damaging your body with POTENT intravenous steroid drugs.
  • After allotting three (3) months for The Mayo Clinic adhesion surgery to heal, exploratory surgery was performed which immediately revealed a “bundle of impinged nerves” as the culprit causing the pain.  The surgeon removed them from your abdomen, and the problem was solved.  When you tried to convey this discovery to The Mayo Clinic in an attempt to help them, help other patients with possibly the same problem, they ignored your correspondence.
  • 48 years of age2011 – It should have been a very good year especially in light of the December, 2010 surgery which had fixed the problem The Mayo Clinic had missed.  But recuperation from that relatively minimally invasive surgery also involved adjusting to moving back to New Jersey to live with your Mom as your medical bills and inability to work had played your hand.  Santa Monica, CA will be sorely missed but when you had to sell your car to pay for the monthly health insurance premiums, there was no looking back.
  • 2011 was also marked by the dramatic increased effects of your compromised immune system and the side effects of having taken the Anti-TNF Agent “Miracle Drugs” for several years.  While these “Biologic” drugs did enable you to have a few good and productive years in New Jersey and then in Santa Monica pursuing your dream of making movies, that life came at a price you could not afford.  At first, it was only the sudden onset of excruciating joint pain but then seemingly out of nowhere you’d wake up with fevers every 2 or 3 weeks that were as high as 105.  Then you were in, and out of, hospitals for bronchitis and pneumonia until your extreme shortness of breath caused a New Jersey emergency room to delve deeper.
  • Walking up stairs or participating in any type of strenuous activity had begun to cause such severe shortness of breath it felt like you were sucking for your next breath through a pencil-thin straw.  After too many Emergency Room Trips to remember, the New Jersey ER doctors performed more invasive lung tests and suddenly you woke up in a hospital room with 8-10 doctors looking down on you.  They had found numerous unidentifiable spots on your lungs and were prepping you for lung biopsy surgery.  It was happening so fast it seemed surreal.  You asked the thoracic surgeon about the look of urgency in everyone’s eyes and he told you that lung cancer was suspected and they needed to obtain the biopsy while you were still able to operate your lungs without mechanical assistance.  That day sucked.
  • You had been through so many surgeries but somehow an operation on your lungs seemed to make you feel even more vulnerable.  You hated waking up in the Recovery Room in pain and feeling COLD so you begged the surgeon and his team to make sure your pain and warmth were reasonable attended to.  Having been briefed on all you had been through in just the past few years, everyone seemed to be on the same surgical page, but they never are, and rarely ever will be.  You woke up from the surgery shivering and in severe pain.  It was as if your worst nightmare had come true.  The lovely nursing staff tried to help and gave you the standard pain medications but your tolerance for them had been blown up long ago.  You needed the Pain Management Team but signals got crossed and you suffered like an abandoned wounded soldier for 3 days.
  • Once you were coherent, they told you that you thankfully did NOT have lung cancer but you had a rare, but sometimes fatal, lung condition called “Bronchiolitis Obliterans with Organizing Pneumonia” or “BOOP.”  Technically, it is treatable with a year-long tapered course of the steroid drug, Prednisone, beginning at 60 MGs a day. But they hadn’t much experience treating BOOP and that was evident as you watched the 8-10 doctors debate the proper dosage of Prednisone to start you off at.  They also didn’t understand how you could even acquire BOOP since it typically affected older patients and was apparently much more prevalent among coal miners!  It had to be the Crohn’s Disease Anti-TNF Agent drugs because once you started them you also began experiencing severe respiratory symptoms.  While you loved New Jersey and it’d be hard to find a more appreciative fan of Bruce Springsteen and The E Street Band, your BOOP treatment had to be managed by your New York Crohn’s doctor and a New York Pulmonologist who hopefully had seen this BOOP sh*tstorm several times before.
  • The New York doctors clearly viewed the Crohn’s drugs as the cause of the BOOP and watched you carefully as the Prednisone started to change your body.  It soon became evident that you had all the side effects of Prednisone (i.e., you gained 50 pounds in 3 ½ months) but without its medical benefits as you were still struggling to breathe like Redd Foxx running The Boston Marathon at 70 years of age.  Your continuing breathing issues also caused more pneumonia episodes and more hospitalizations and if you had gained another pound from the Prednisone your body might have exploded.  Accordingly, the NY doctors convened and abandoned the traditional Prednisone BOOP treatment for an experimental one involving the Chemotherapy Drug, Cytoxan.  After a few monthly infusions of Cytoxan, the BOOP began to clear.  Again, you were “lucky.”
  • The Cytoxan was working miracles on the BOOP but it was also causing your Crohn’s Disease to flare-up.  You were fighting battles on so many fronts not to mention the barrage of medical bills, dunning notices, collection calls and disability paperwork.  Your dreams of making movies and finding a smart, cool, beautiful woman had to be placed on hold as you tried to devise a mindset to survive the avalanche of one medical adversity after another.  But when you think about it, it was all caused by your Crohn’s Disease, in one way or another.  “If the Thunder don’t get ya’, then the Lightning will.”
  • The late 2011/early 2012 Crohn’s flare-ups resulted in a few hospitalizations but nothing appeared prominently in the diagnostic tests.  However, you couldn’t leave your house due to the “broad spectrum” of Crohn’s Disease symptoms and the severe pain you experienced on a daily basis.  That “broad spectrum” phrase gives -  and it takes.  Finally, in the spring of 2012 and only at the age of 49, your long-trusted Crohn’s doctor ordered a basic GI Series and it revealed that you had BIG problems in your small bowel.  What was clearly evident to the human eye from this test were a few Strictures (i.e., adhesions causing partial obstructions in the small bowel) and  a red-hot Crohn’s Disease flare-up.  As it turned out, the fancy “cutting-edge” MRI/CT Enterography tests took too broad of a perspective to identify the specifics.  Truth be told, it was a New Jersey radiologist who suggested that you undergo a Small Bowel GI Series for closer examination.  You were initially told such tests take too much patient time and are thus no longer cost-effective for most Radiology Facilities but you again “got lucky” when this New Jersey Radiologist agreed to perform the GI Series.   Nice guy, he was probably a Bruce Springsteen fan.
  • Through your persistence and with the help of some very compassionate and smart doctors, you finally got some answers but they required the most serious Crohn’s Disease surgery you’d have to-date.  You were also told it would be hard to find a surgeon willing to tackle such a complicated gut.  Strangely, it didn’t take long to find that surgeon as you got “lucky” again.  Then, on June 28, 2012, after 17 days at Mt. Sinai Hospital, you were released after undergoing successful surgery during which numerous adhesions were lanced to simply access your intestines, several Strictures were repaired via a few Strictureplasties and your small bowel was Resected at the area of the inflamed Crohn’s Disease flareup.
  • September, 2012 – As you recuperate and try to get re-acclimated to your new plumbing, you go for a routine eye examination and learn you must have your second Cataract Surgery, this time on your right eye.  This is such a classic Crohn’s Disease complication that it’s even published in the “What to possibly expect with Crohn’s Disease” pamphlet.  That should be no problem, you’ll eventually get to it.  There’s several more complications from the Surgery, the BOOP, the Prednisone and the Cytoxan but the big question of the moment is whether or not to take a different chemotherapy drug (i.e., “6MP”) as “preventative medication” to keep you and your Crohn’s Disease away from the operating table?   Since it’s the only Crohn’s Disease drug you have not taken, it’s the only one you can take now.  But you have to wonder: Did the Prednisone or Cytoxan you took to successfully treat the BOOP cause the Strictures and Crohn’s Disease flare-up which required the extensive June, 2012 surgery?  (Keep in mind that the BOOP occurred as a side effect from years of taking the Crohn’s Disease Anti-TNF Agent drugs, Humira and Cimzia.)
  • If you think the answer is “Yes,” then why take the 6MP?  After all, there seems to always be a steep price to pay no matter what you do or take regarding Severe Crohn’s Disease.   And if your time with Crohn’s Disease has proved anything: If the Disease don’t getcha’, the drugs or the side effects will!

What’s the best thing about Crohn’s Disease? Crohnology.com

The Strangeness of Crohn’s Disease

Like many other chronic illnesses, Crohn’s Disease can be so pervasive that besides the obvious medical discomfort, pain, inconvenience and occasional embarrassment, it can also have devastating psychological, emotional, professional, social, familial and financial effects.  Because it is a “broad spectrum” disease, some patients at the other end of the Crohn’s continuum have few and relatively insignificant “flare-ups,” if any.  This makes Crohn’s a very difficult disease to initially diagnose and treat since doctors must rely upon the degree and frequency of patient symptoms to fine-tune the most effective treatment.  Trial by error has never been more frustrating and painful.  Moreover, different Crohn’s patients react differently to the different treatments just as one patient can eat lettuce or popcorn, without incident, while another could wind up hospitalized as a result of eating the same foods.  I know, Crohn’s Disease sounds more like a “Soap Opera” than a serious, chronic illness.

Crohn’s is also incurable and an autoimmune disease.  Its effects on the immune system make it analogous to that “gateway drug” all parents fear and the many available “effective” Crohn’s treatments aren’t always scientifically-proven. Huh? I don’t mean to criticize the hardworking researchers, volunteers and doctors who THANKFULLY dedicate their careers to finding a cure for Crohn’s Disease, but I have the disease for 30 years and have yet to receive a logical answer as to the reasoning behind the efficacy of drugs like “6MP,” “Imuran” or the various Biological Agents drugs such as “Remicade,” “Humira” or “Cimzia.” Yet, despite the short- and long- run significant medical risks associated with each of the aforementioned, these drugs are routinely prescribed for patients with Severe Crohn’s Disease.  They work very well for many patients, not at all for others and still, for other patients, they cause extremely serious medical problems (that’d be me).  The term “effective” is also relative in Crohn’s Disease since each treatment or drug therapy seems like a swap of digestive pain and discomfort for some other kind of a more manageable medical problem.  In that regard, this sometimes feels like my doctors are “robbing from Peter to pay Paul” except I have to pay to see another medical specialist.  But if it is a short term treatment, the price to pay is at least transparent.   It is when the treatment works for a longer period of time that there is usually a medical price to pay which could be far worse than having Crohn’s Disease in the first place.

Crohn’s Disease & Nuances of the Snake Venom

Trying to understand Crohn’s Disease and then explaining it to friends and loved ones is like deciphering the rabid appeal of Reality Television or the world’s fascination with Donald Trump.  From a medical perspective, however, I think the acceptance of certain contradictions and unknowns of Crohn’s Disease are similar to how snake venom is understood.  Most people simply fear getting bit by a venomous snake, as well they should, but as with Crohn’s Disease, the devil’s in the details, as demonstrated by the following explanation written by wiseGeek “clear answers for common questions”:

Snake venom affects the human body in a number of ways, depending on the snake, the type of venom, and how much venom is released. Different snakes produce different types of venom, and even within a snake species, the components of venom appear to vary, depending on geographic location. This is why it is important to be able to identify the snake species involved when one is bitten, so that the appropriate anti-venom can be administered.

There are basically three different kinds of snake venom. Hemotoxic venom is designed to assault the cardiovascular system. Cytotoxic venom targets specific sites or muscle groups, while neurotoxic venom goes after the brain and nervous system. Some snakes combine venom types for a more effective bite, while others only carry one specific form of venom. All venoms contain a complex cocktail of proteins and enzymes.

When someone is bitten by a snake with hemotoxic venom, the venom typically acts to lower blood pressure and encourage blood clotting. The venom may also attack the heart muscle with the goal of causing death. Cytotoxic venom is designed to cause tissue death, which is why some people have to receive amputations after being bitten, because the venom has eaten away the localized tissue. Many cytotoxic venoms can also spread through the body, increasing muscle permeability so that the venom can penetrate quickly.

Neurotoxic venom works to disrupt the function of the brain and nervous system. Classically, such snake venom causes paralysis or lack of muscle control, but it can also disrupt the individual signals sent between neurons and muscles. Such venoms can also attack the body’s supply of ATP, a nucleotide which is critical in energy transfer between cells.

 Confessions of a Professional Hospital Patient

So, what could possibly be GOOD about Crohn’s Disease and then among those good “things,” what’s BEST?  Prior to the invention of Health Care Social Media (“HCSM”), I wouldn’t be writing this article, at least as a serious piece.  But with the advent and proliferation of HCSM, it became possible to “connect” with people all over the world who also suffered from this Soap Opera of a disease called Crohn’s.  Shortly thereafter, Virtual Patient Communities or On-Line Patient Networks for specific diseases started popping up.  I stuck my toe in the pool but credibility, candor and diversity, or lack thereof, were always issues for me as I’ve basically seen it all with Crohn’s Disease having endured over 200 hospitalizations and 20 surgeries.   In fact, in 2001, when I published my book, Confessions of a Professional Hospital Patient, I insisted that my publisher place the URL, www.hospitalpatient.com, on the spine of the Book because I envisioned having great success with the Book and then creating a Virtual Community of Crohn’s Disease patients who would pool their experiences to help one another.  Hope and dreams are important so I just figured I had a good motivational idea that one day would come to fruition but it seemed so unrealistic at the time.

However, my Crohn’s Disease communal aspirations started to come into view when my Book immediately received critical acclaim and the media came a’ callin.’  I did NBC’s “Today Show,” a variety of worldwide cable television shows and a few key radio interviews.  One thing led to another and I had soon hired a top literary public relations firm.  My dreams were within my grasp, so it seemed.  “Larry King Live” and “Oprah” were realistic targets in the Book’s Public Relations Plan so long as I learned how to “sell” during each interview and also kept my Brooklyn candor to a minimum.  On Monday, September 10, 2001, I did our first organized national endeavor, a Satellite Radio Tour of all the key morning radio programs in the United States.  It went very well, with some interviews airing live, and others taped for broadcast later that week.  I was being pitched as a “Professional Patient” of sorts due to my battles with the little known, and less understood, chronic illness, Crohn’s Disease.  On Tuesday, the next day, September 11, 2001, the horrific tragedy of 9-11 took place and marketing my Book was no longer of interest to me.

The Birth of Virtual Patient Communities

A few years after 9-11, things on-line got back to normal and then the Hillary Clinton-Barack Obama Presidential Campaign put “Healthcare Reform” back in the national dialogue.  My Book took on a second life and I started getting emails from Crohn’s Disease patients all over the world, either thanking me for helping them via my Book, or posing questions to me given my apparent knowledge and experience.  The viability of a Crohn’s Disease Virtual Patient Community again seemed reasonable but, in all honesty, it didn’t seem realistic to happen on the URL, www.HospitalPatient.com.  But I knew the necessary ingredients and a few years later, after I had started a few YouTube channels like The Medical Minute, I read an article on-line about some college or graduate school kid named Sean Ahrens who was starting “Crohnology.com” as a way to “connect” Crohn’s Disease” patients.  I emailed Sean immediately and summarized the story above and suggested that we Skype ASAP.  He agreed and after a fun Skype session, I just smiled because I knew I had met “the guy” who had accomplished what I wanted to do all along.  Now, I wanted to help him make it succeed.

Crohnology.com – Credibility, Candor & Diversity

I got involved with Crohnology.com a few days after Sean Ahrens and I spoke with one another.  Even at that early stage, I was able to envision what Crohnology.com was soon to become.  Word quickly spread and within a few months, Crohnology.com became THE trusted global place for Crohn’s Disease patients to share knowledge, experiences and insights, all for the purpose of helping each other manage such a multi-level challenging disease.  It was also a wonderful and validating feeling to converse with such diverse people who had the same health experiences as I did.  After a while of posing questions and answering questions, Crohnology.com featured my Blog.  I was honored to have my personal insights published within such a Crohn’s Disease “sanctum.” Clearly, credibility, candor and diversity are all present at Crohnology.com.  This makes it a most useful “tool” for a Crohn’s Disease patient.  I believe I have even been quoted as saying that every Crohn’s Disease “Medical Treatment Plan” should include regularly participating in Crohnology.com.

What’s the best thing about Crohn’s Disease?  www.Crohnology.com.

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Modernizing the Hospital Patient Experience

Perchance to Dream: Improving the Hospital Patient Experience

Earlier this week I was invited by Wego Health (whose unique corporate mantra is “Empowering health activists to help others.”) to participate in a videotaped Virtual Patient Panel to help the company ExperiaHealth (“Experia”) (whose corporate motto is “Humanizing the Healthcare Experience”) in improving the “Hospital Patient Experience,” and in this case, specifically the Discharge Process. Unbeknownst to me, Experia has been doing this for quite some time in at least 15 significant hospitals across the country. Who knew that while I was being hospitalized all over the country being constantly awoken at 3 AM to take a sleeping pill or harassed by the hospital’s television collection service for $6.00 when I was practically in the surgical recovery room, that such an incredibly necessary company was implementing many of the things I had been complaining about after 200+ hospitalizations.  I guess if you live long enough, life will pleasantly surprise you.  That’s why, incidentally, I always tell chronically ill people with incurable illnesses such as Crohn’s Disease that, “the longer you live, the longer you live.” What I mean is that the longer you live, the better your chances are for new and more effective treatments, or even a cure, being discovered.  Hence, this Blog Entry is indirectly about how a dream of mine, i.e., attention being paid to improving the “hospital patient experience,” is now being actualized and I am also involved in helping to carry out this new reality of mine and of thousands of hospital patients around the world.

The Business Side of Healthcare

When I got to meet the Experia Patient Panel Moderator, Elizabeth Boehm (“Liz”), whose title is Director, Patient Experience Collaborative; I was shocked that such thoughtful and compassionate people worked on the business side of healthcare.  Up until now, I had assumed all healthcare executives were solely focused on providing the best patient care at the lowest price paying no mind to the often physically and mentally painful & unnecessarily demeaning experiences patients must undergo to achieve these corporate objectives.  More specifically, I always envisioned the healthcare “business” functioning like the inner-workings of an automobile manufacturing company which always developed the coolest looking, fastest driving and most fuel efficient cars without giving any consideration to the driver “experience” or if a typical-sized driver could even fit into these sleek fast-moving machines without their ever-expanding waistlines rubbing up against the steering wheel and preventing a tight left turn.

Perhaps the car drove too “hard,” the seats were too stiff and the drivers developed hemorrhoids within the first 5,000 miles or the driver’s seat had to be so low and devoid of lumbar support that spine fusion surgery was inevitable within the time frame of the usual bumper-to-bumper warranty.  Despite these rather significant driver inconveniences, the automobile company’s marketing programs for these slick new macho machines created great demand and the general public assumed that drivers just lied or never mentioned the aforementioned downsides because no schmuck complains about being seen driving around in the best vehicle money can buy.  That’s like dating Jennifer Lopez and complaining to the Press about her ridiculously over-sized derriere.

A stretch, maybe; but I’ve always envisioned the business-side of Hospitals operating exactly like this where patients and their friends or families of patients assumed that quality patient care came along with occasional horrific, unsanitary and demeaning personal experiences.  However, I was never convinced that my friends and family understood the frequent lack of humanity and common decency encountered by hospital patients.  It just went unspoken in my world until I wrote a Book about my experiences (see below).  As a case in point about the public’s acceptance of quality healthcare at whatever temporary painful cost to the patient:  Did television viewers ever watch the critically acclaimed show “ER” and even once witness: consistently disgusting hospital food; patient roommates who destroyed shared patient bathrooms almost as if they had a license to live like they were in a monkey cage for a few days; condescending doctors to whom patients had to follow out of their rooms like Peter Falk’s “Lieutenant Columbo” sans rain coat just to finish asking a significant question or two; or nurses with borderline evil bedside manners whose lack of compassion was only surpassed by their robotic personalities?

The Value of being a Professional Hospital Patient

But after listening to Experia’s Liz Boehm explain the Patient Panel’s objectives, style and procedures, I felt like I had been summoned into the principal’s office and instead of being chastised for my bad behavior teasing a girl I was actually smitten with, I was heralded for possessing certain unique knowledge that he found helpful in improving the effectiveness of teachers and education.  I have to admit that during those first few moments of this Patient Panel, the experience felt pretty cool because my Crohn’s Disease had now apparently qualified me for something other than Miralax.  I was so surprised at my almost “reversal of fortune” role in this Patient Panel that it felt as I had been sleeping for 5 years and when I awoke Tom Brady of the New England Patriots was President and Anne Hathaway was making me breakfast wearing nothing but a Tom Brady jersey.

Truth be told, I wrote a Book about this in 2001 called, “Confessions of a Professional Hospital Patient,” because there was so much wrong with the “hospital patient experience” I felt there was a story to be told which could shed some light on significant but subtle problems almost every person in the world would someday experience since everyone gets sick and most people don’t get through life without an adult hospital stay or two.  Thankfully, my Book was critically acclaimed and it continues to sell as “the most accurate and honest depiction of the ‘hospital patient experience’” but to make sure Ms. Boehm’s aim was as true as Elvis Costello’s, I had a few questions for her about Experia and their hospital patient experience venture.

Who is ExperiaHealth?

In short, Experia’s website (see http://www.experiahealth.com/about.htm) lists its description and corporate objectives, which thus far I can attest to being 100% accurate, to be as follows:

ExperiaHealth is a leading experience improvement company that delivers breakthrough services and technologies to improve the patient and employee experience at hospitals and clinics nation-wide. ExperiaHealth’s aim is to accelerate adoption of practices and technologies that improve outcomes, create value for patients, and restore the human connection in healthcare.

Ms. Boehm’s qualifications are also listed on the Experia website and she too is uniquely qualified and dedicated to the cause my life has been dedicated and directed to once I was diagnosed with Crohn’s Disease approximately 25 years ago.   At the risk of embarrassing Ms. Boehm for her impressive and thoroughly focused career of helping to improve various difficult life experiences, below is  the website’s description of her background:

Elizabeth Boehm, Director, Patient Experience Collaborative

Liz Boehm is the Director of ExperiaHealth’s Patient Experience Collaborative where she brings a wealth of expertise on defining and implementing new innovations in healthcare experience, and helping hospitals and care providers create lasting value for patients and caregivers. Through the Collaborative, she helps ExperiaHealth’s clients create a competitive advantage via the sharing and adoption of practices and technologies that improve outcomes, create value for patients, and restore the human connection in healthcare.

Liz joins ExperiaHealth from Forrester Research where she was a principal analyst serving customer experience professionals in the healthcare and life sciences industries. During Liz’s 15 years at Forrester, she worked with the country’s top hospitals, health insurers and life science firms to craft customer experience strategies and drive business value through improved customer engagement. She joined Forrester in 1997 and co-founded Forrester’s healthcare and life sciences research practice in 1999.

Before joining Forrester, Liz was a health extension volunteer with the Peace Corps in Burkina Faso, West Africa and graduated from Amherst College with a degree in women’s and gender studies.

“Patient Experience Managers” are part of an emerging industry. Who knew?

My awareness of the efforts of people like Ms. Boehm and companies like Experia first came to light thanks to a comment I received on my Blog which pointed out that the hiring of “Patient Experience Managers,” or PEMs, is an emerging field in healthcare.  It was also only a week ago during the “Best 60 Minutes on Sunday Night,” a/k/a the “Health Care Social Media” TweetChat at 9 PM EST, when a new Twitter buddy suggested the possible creation or existence of PEMs.  I had responded to what I thought was his unrealistic suggestion by essentially saying, “Dream On.”  Well, thanks to the tenacious efforts of true Patient-centric organizations like Wego Health and Experia, I’ve learned there are actually current formidable efforts to modernize the “hospital patient experience” so that it’s quality catches up to the technology-driven increase in  Patient Care.  Maybe now hospital executives won’t immediately dismiss my idea to create YouTube channels in all hospitals to distribute interesting and entertaining hospital employee-created and hospital patient-created content to replace the almost “stick-figure” and “birds and the bees” videos which are currently looped on “medical information channels” shown on hospital patient room televisions.  Ever see a stick-figure drawn person get a colonoscopy? Check into an old hospital and channel-surf.

Influencing the Hospital Patient Experience

In any event, this Virtual Patient Panel consisting of myself and two (2) other experienced patients, Jody and Alicia.  Wego Health had their technology guru, Aaron, somehow connect each of our computer web cams to one hub such that it seemed we were on stage together being interviewed by Elizabeth Boehm, Director, Patient Experience Collaborative, Experia.  It’s funny but when I first saw Liz’s title, “Director, Patient Experience Collaborative,” I thought I was in the Twilight Zone or had just walked out of the 1973 futuristic movie, Westworld.  But once she began to ask such thoughtful questions to elicit useful information about our respective patient experiences, I began to feel as if all I have gone through in 200+ hospitalizations in various cities around the United States might actually have a certain aggregate value because now someone is listening to me who has the interest, motivation and even the influence to make experience-improving changes in the “hospital patient experience.”

However, since I am always candid and also inherently suspect of think-tank studies and managerial guru bullshit and I had never seen meaningful patient-centric job titles before in the many hospitals I’ve done time at, I asked “Liz” (she insisted we call her by her first name so the atmosphere was very casual) where in the United States are these hospitals who actually care about the quality of the hospital patient experience?  She then listed 15 prestigious hospitals and told me a little about other similar targeted efforts of Experia.  I was sold as she had me at “15.”  Moreover, after hearing my various answers and ideas throughout the 2-hour Patient Panel, Liz later commented that she was purchasing my Book, “Confessions of a Professional Hospital Patient,” for each of these 15 hospitals because I guess she was intrigued by my brutally candid yet respectful approach toward medical institutions and medical professionals despite having survived through so many nonsensical and avoidable demeaning and painful experiences within their respective control.

You’ve Got the Cure, Ooh, it’s your Attitude (the “Kinks”)

In terms of learning from my past experiences, especially those pertaining to the “hospital patient experience,” I try to think like a dog because I don’t want a negative experience to forever taint my intellectual capability to contribute to improving the hospital patient experience.  For non-animal lovers, this means I try to have the memory of a Short-Reliever Pitcher in Baseball so that one horrific experience doesn’t haunt anything I do, say or feel moving forward.  It’s like the lyrics in the Kinks song, “Attitude”:

You might have the illness, but you’ve got the cure
You’ve got the answer, you will endure
You’re the only person that’s gonna pull you through
Ooh, with your attitude

Chorus
Attitude, Oo Oo Oo
Your attitude
Attitude, Oo Oo Oo
Your attitude

In my youth it wasn’t so easy to have such a short memory and pleasantly forget about the times a Nurse Ratchet-type insisted on re-inserting my Foley Catheter because, crazy me, I had been urinating into the toilet and not into a urinal container where they could measure my “urine output” since the doctor had removed the Foley Catheter earlier in the day and that was the hospital’s protocol – which I was never told about – or being hounded by the hospital television payment collection service while I was still in the midst of coming out of anesthesia from spinal fusion surgery.  While the $6.00 collection episode did not leave a permanent scar on me, I will never forget this innocent 17-year-old  kid carefully nudging me to tell me I owed $6.00 for 2 days of renting the hospital’s television.  I do remember, though, motioning him to come VERY close to my mouth to ensure he would hear my painfully strained answer when I said: “Do you really think this is the best time to try and move me, even an inch, to get my wallet and pay you $6.00 when it has to seem patently clear to even a moron that I am not a “high risk” flight patient?”  After contemplating for a few seconds the fallout he’d face from his boss Skippy, he nodded in agreement as if my answer was reasonable, but I wanted to share my surgical pain with him in the worst way.  What was once a painful memory is now a funny story.  It’s all in your Attitude.

Why the Focus on the Hospital Patient Discharge Process?

The questions posed to each of us on the Patient Panel seemed to focus on the Hospital Discharge process because according to Liz various studies had apparently indicated it as either the most troublesome spot for hospitals and/or that the Discharge process was an area most easily quickly improved.  When asked a related question, I politely told Liz that in my humble opinion the studies seem wrong because, and just by way of quick example off the top of my mind, starting Intravenous Lines with the dexterity of a Plumber, among other aspects of the hospital patient experience, seemed a little higher on my priority list for needing improvement since patient IV lines are the standard MO in all hospitals and initiating them is likely the most intimate activity that goes on between a patient and a medical professional besides memorable rectal probes.  My body gets over the occasional over-zealous rectal exam quickly but there are parts of my forearms which are still black and blue from my June, 2012 17-day hospital stay and areas around my wrist still smart and throb if they come into contact with merely fabric while I toss and turn trying to fall asleep at night.

Standardizing the times of Morning Doctor Rounds

Liz duly noted my comment and apparent well-rounded knowledge of hospital problem areas but as per her suggestion I decided to focus on the task at hand.  To that end, I classified the hospital discharge process as essentially one big cluster-fuck which could only be helped if doctors committed to standard “morning round” times so that patients could properly organize the various aspects of their departure which are not under their control.  This includes getting all written orders from doctors, all prescriptions, all warning signs and the patient’s coordination of obtaining a ride home from a family member or friend.  This reminded me of the numerous times when the hospital patient room had a sign on the wall which indicated all discharged patients must leave the room by 10:00 AM and I would tell a friend to come pick me up at 10:00 AM only to have to wait until 12:30 PM when one of my doctors would decide to stroll into my room to finalize my “orders” and write the necessary prescriptions for me to go home.  As a result, my friend or family member would have to completely reorganize their day and me and my Crohn’s Disease became an even bigger pain in the ass to them.   Accordingly, besides the logical implications of a more organized “Discharge Process” which takes patient needs into account, I think a more consistently standardized “morning rounds” physician schedule would give patients back some “control” over their situations which they understandably have to relinquish upon entering the hospital for the purposes of being treated most effectively.  I also think resuming control of one’s life is of therapeutic value and thus an aid toward the recuperative process so that’s another rationale for consistent standardized “morning round” times.

My Worst Hospital Discharge Experience

Liz also asked each of us about our worst experience being discharged.  My knee-jerk reaction left me with no specific answer other than to discuss the myopic almost survival-like state of mind necessary to “do time” in the hospital environment such that a quick re-admission to the hospital is the worst possible scenario and could lead to scarring mental conditions such as post-traumatic stress disorder.  Then I remembered when that happened to me at a world renowned hospital (from which I am now banned for life, by the way, for not letting them treat me a certain way medically when I knew they were wrong and later proved they were wrong by being diagnosed differently at another hospital) and how defeated I felt when repeated projectile vomiting in a hotel room across the street from the hospital left me with no choice but to return to the same floor in the hospital for another 15 days or so.  To that end, I will never forget the words of “wisdom” some moronic Intern rationalized with me when I was initially prematurely discharged and my belly was so distended I looked like The Michelin Man.  He said: “Sometimes you are healthy enough to be discharged from this hospital but not well enough to go [fly] home.”  It was such a load of self-serving crap and literally put my life in serious jeopardy as I almost joined music greats Jimi Hendrix, John Bonham, and **Eric “Stumpy Joe” Childs [from the band “Spinal Tap”] in the “Big House” as a result of choking on their own vomit. [**Technically, Eric “Stumpy Joe” Childs choked on someone else’s vomit but he is a fictional character, as his band, “Spinal Tap,” was created for the hysterical 1984 parody film rockumentary, “This is Spinal Tap.”]

The Perils of Patients Letting their Mental Guards Down

The two (2) other patients had some excellent suggestions for Liz in answering her variety of questions surrounding Improvement of the Hospital Discharge Process but I will leave those for the Video I am sure Liz and Experia will be compiling.  As for me, I brought up how the mental discipline required of hospital patients to maintain their sanity could get loosened up a bit once they start hearing the word “Discharge” (in much the same manner as Prisoners with the word “Parole”) so doctors need to be very careful when broaching the subject and condescending remarks alluding to Discharge could actually be hurtful to patients if they are based on style and not substance.  For some patients, I suppose premature enjoyment of the prospect of being paroled from the hospital is fine but, in all seriousness, it takes such intense mental discipline to adjust to the prison-like privacy parameters of a hospital during long hospital stays that delusions of grandeur can quickly set in if the word “Discharge” is recklessly thrown about by a medical professional in the hospital patient’s room.  This might sound like an exaggeration to folks unfamiliar with the hospital patient experience but some doctors use the lure of “Possible Discharge” to get their depressed patients from one day to another and there are MANY depressed patients in the hospital especially around holidays and before weekends.  Perhaps this is a necessary medical tactic but when it fails, the depression becomes overwhelming.

Identifying ALL Treating Medical Professionals on Discharge Paperwork

I also conveyed to Liz that I believe STRONGLY in receiving written Hospital Discharge paperwork which includes a detailed list of all the doctors and other medical professionals who treated me so that when I receive a Bill for $920.00 for three (3) in-hospital consultations by a Dr. Kardashian, I need to know who is trying to get paid for these services apparently rendered to me.  This has been a problem for me when, for example, I did not ask for the services rendered such as in the case of a psychiatric consultation sought by my condescending surgeon who couldn’t understand why I wouldn’t go along with the premise that he is God and therefore he couldn’t possibly be wrong about why I still couldn’t properly digest food so many days after his surgery.

I have also had situations where a mental specialist comes to “see me” every day I’m in the hospital just to “see how I am doing” all the while expecting to get paid by at least my health insurance company.  Sometimes it has been an honest misunderstanding and the psychiatrist had the purest of intentions.  But, more often than not, it appeared to be a scam once I recuperated and looked through the billing paperwork when the hospital bills started rolling in around 3 weeks after my Discharge.  In such instances, I am crystal clear with the psychiatrist in the hospital that I do not wish to retain his or her services and I denote in writing the date this conversation takes place.  It then becomes comical when the same doctor returns the next day offering to “discuss” why I don’t think I need his services and then weeks later I see psychiatric services “rendered” that 2nd day in the hospital on an invoice from the psychiatrist as if he treated me that day “to discuss why I feel I don’t require psychiatric care.”  Accordingly, I told Liz it would be nice to have a list of the “good, bad and the ugly.”  I also brought up to Liz how the Discharge process and even the entire hospital patient experience can be affected by disease-specific issues and it shouldn’t be.  For example, in some hospitals, Pediatric and Cancer patients get the white-glove treatment during the entire hospital patient experience whereas patients with Crohn’s Disease, Diabetes or Fibromyalgia are treated like the brother on “Keeping up with the Kardashians.”  What’s his name?

“Discharge” by any other name is still a Legal Term of Art

Liz also asked if “Discharge” should be called by another name to downplay its apparent troublesome meaning to-date or to brighten up the Discharge Process for patients who have good hospital patient experiences and positive medical outcomes. However, the attorney in me knows that some type of word or phrase is necessary to transfer medical liability away from the hospital when the patient leaves the hospital to properly apportion potential separation liability so phrases like “Recuperation Time” or “Going Home Time” are good ideas but not very practical because then lawyers wouldn’t know where to draw the line of culpability should the patient relapse or get worse after leaving the hospital.

The Conclusion:  Humanizing the Healthcare Experience

Like I said at the very beginning, in my humble opinion the Discharge Process from a hospital is a cluster-fuck.  While I sincerely appreciate the efforts of companies like Experia and people like Liz, I think the hospital patient experience could be more quickly modernized by focusing on basic human kindness and the logical opportunities for improvement which pop up throughout the hospital patient experience for medical professionals to treat patients the same way the medical professionals would want to be treated if they were patients.  That said, however, this is all finally beginning to make sense and I feel confident that companies like Experia and people like Liz are totally on the right track especially when their stated goal is: Humanizing the Healthcare Experience.

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Hospitals, Patients, Social Media & Prison

1988 to 2012 – SAME “Hospital Patient Experience

I was recently hospitalized in a wonderful medical facility in New York City for the same surgery I had there in 1988.  The medical technology and level of patient care had surely changed and improved since 1988 but the “experience” of being a “Hospital Patient” hadn’t changed at all but for an upgrade in Patient Room Televisions.  That myopic “patient-centric” way of thinking reminded me of what my parents told me when they were kind enough to “buy” me my first car in college which was a beat-up 10 year-old hand-me-down vehicle with 120,000 miles on it: “Son, with a new pair of front tires, this car will be as good as new!”

Hospital Patients are now Business Customers

The challenge for hospitals from a patient perspective or the task-at-hand with hospitals who claim they are “patient-centric” is that they need to start perceiving Patients as Customers because their motivation for patient-centric ideas should be repeat business, positive word-of-mouth and staving off competition.  Otherwise, whatever is done to improve the hospital patient experience will come across just like the BS speech I was given about my “new” hand-me-down car. Based on my experiences from having been hospitalized over 200 times at several different hospitals over the past 25 years, it is therefore my contention that the “Hospital Patient Experience” needs to be substantially modernized so that it is reasonably commensurate with the technological advancements made in the area of increasing the quality of Patient Care.

But, in Hospitals, optimizing the “Hospital Patient Experience” is not any one person’s job or responsibility so there’s no accountability and the touchstone for all healthcare executives remains the quality of patient care.   This is not a bad objective in a “healthcare vacuum” but now in a much more competitive climate the patient is a true customer and the most successful businesses treat their customers the way they would want to be treated.  Whenever I am hospitalized, this responsibility always falls on my Nurse but he or she is understandably way too busy with their medical responsibilities to make a dent in the quality of my experience.  As per a new Twitter friend of mine Tim C. Nicholson (@timbigfish) said during a recent “Health Care Social Media” [“hcsm”] TweetChat, Hospitals should evolve into hiring “Patient Experience Managers” or PEMs.  I responded by tweeting I’d faint if I ever encountered such a PEM specialist in a hospital during my lifetime; but it would be a superb development.

How Hospitals can feel like Prisons

Unfortunately, my 2012 surgery, through no one’s fault, had many ups and downs so I was incarcerated “doin’ time” for 16 days and 17 nights.  Seriously, it literally felt like I was living in a prison not knowing when I’d get out or what I was to do there except watch repeats of “Law & Order” on the patient room’s upgraded television.  All the while, my doctors, nurses and various medical professionals diligently worked on me utilizing the latest technological tools and techniques.  However, after they were done, I still had approximately 22 hours each day to myself.  My doctors recommended that I walk around the hospital floor to ease the surgical pain and to “get things moving” inside of me.  Ever the obedient patent, I walked for what seemed like miles from one hospital Unit Floor to the next wheeling around my IV Pole which had various machines attached to it for the purposes of infusing different medications into me.  But without visitors on a given day, all I did was listen to my iPod and walk around the different areas of the hospital. With 22 hours of this type of free patient time, there has to be opportunities to enhance both the “patient experience” and the hospital’s patient-centric efforts.

After walking for the length of three (3) or four (4) 30-minute Podcasts, this left 20 hours of time to kill and this is when the “Hospital Patient Experience” feels most like being in Prison.  Call me crazy, but this seemingly close association with the ultimate penalty in our Penal System, can’t be good for the marketing of hospitals or for healthcare marketing in general.  In any event, and not that I know personally, but I’ve been told that in prison, where people are simply “doing time,” the incarcerated criminals use those 20 hours to exercise in the yard, socialize with other prisoners, congregate to watch movies, develop “shivs” for protection or to use to kill other inmates, etc.  I wasn’t crazy about some of my hospital roommates but my displeasure never rose to the level of trying to mold the hospital’s plastic dinner utensils into some type of shiv.  Seriously, with no thinking whatsoever besides security, prisons often offer more patient-centric activities than hospitals.  Is it just me, or is that beyond bizarre?

The Necessary Changes that will improve the “Hospital Patient Experience”

Hospitals are always looking for ways to say they are “patient-centric” but that’s like a supposedly beautiful woman constantly telling people how beautiful she is.  I will know how beautiful she is with my own eyes and the more she proclaims her pulchritude (I have been waiting YEARS to get that word into a story!) the less I believe it.  The same is true with hospitals and patients.

First off, hospitals must start perceiving patients as customers and in the process plan for repeat business, word-of-mouth referred customers and competition from other hospitals and “doc in a box” clinics.

Secondly, as part of this new approach, the various medical professionals in the hospital must LISTEN to patients so long as they are succinct and respectful of that professional’s time.

Thirdly, hospitals should STOP focusing on the phrase “patient-centric” as part of their marketing campaign or as a way of describing a particular hospital because it comes across like a Dunkin’ Donuts Store proclaiming they are “Donut-Centric.”  It’s a given, so hospitals must focus on what else sets them apart from other medical institutions.

Lastly, the most obvious change needed is for hospitals to modernize the “Hospital Patient Experience” to the point where it is commensurate with the cutting-edge medical care provided to its patients because of constant upgrades in technology and research.

Social Media is the most efficient Tool to improve the “Hospital Patient Experience”

The advent and proliferation of Social Media seems tailor-fit to help hospitals ease into the necessary transformation from Patient to Customer.  I just worry when hospital executives or so-called social media experts or consultants start touting “ROI” or “Return on Investment” as a consideration in the implementation of a Social Media strategy to help enhance the “Hospital Patient Experience” when posting Videos on a YouTube channel is free and utilizing a Facebook, Twitter, Google+ or Tumblr account is also free.  Yes, there is a cost for the people devising and managing these social media campaigns but it is negligible given the transformative powers these social media platforms possess.

In my humble opinion, the use, objective and importance of Social Media is different in a Hospital than it is in a typical Medical Professional office setting because being hospitalized for even a few days requires Lodging, Food, Socializing and the possibly of being ostracized from the outside world.   Therefore, I think practicing physicians in office settings need not be concerned with creating social media content for their practices or alternatively creating opportunities for their patients to communicate with them via different social media platforms.  Perhaps I am old-fashioned, but I just want my doctors to be as educated as possible on the newest treatments and then to provide them to me in a manner that is professional and pleasant.  My expectations for hospitals, however, are much different as I have explained above.

Formation of a Hospital YouTube Channel as an Example of a Social Media Tool

YouTube is becoming increasingly important because our society’s attention-span is getting shorter and shorter such that the passive communication medium of Video is preferred over reading by most people.  For the same reasons people want to get their news by watching CNN or “The Daily Show with Jon Stewart,” patients and their families would likely respond to video hospital communications. Moreover, placing videos on YouTube and organizing them by channel is FREE so, besides the costs of filming and personnel, YouTube offers hospitals an inexpensive marketing tool and simply by creating a Hospital YouTube Channel the hospital will be associated with a “cool factor” for participating in what has become the world’s virtual “common meeting area.”  Patients will also relate to the cutting-edge effort made by the hospital to try and make their patients feel more at home.  Accordingly, at a quick glance, creating a Hospital YouTube Channel has many advantages.

Content of a Hospital YouTube Channel

In terms of the particular content to place on a Hospital YouTube Channel, I defer to the creativity of each hospital but as a start I think it should include short “organic” or natural videos from the various medical professionals throughout the hospital so patients know who does what within the hospital environment.  In the process, patients will become more comfortable in that hospital environment.  This is significant since many chronic patients may be hospitalized for weeks or months and this type of familiarity with the hospital environment could help stave off the depression which understandably accompanies long hospital stays.  I think the hospital videos made by the Medical Professionals must also be made from their personal perspectives emphasizing their job responsibilities in a humanistic manner as if to seek a human connection with the patient.  The same way “Patients are People,” so are Medical Professionals.  These types of short videos should include contributions from a Resident, Intern, Chief Resident, Attending Physician, Covering Physician, Hospitalist, Floor Nurse, Charge Nurse, Patient Care Associate, Nurse Practitioner, Physician’s Assistants, etc.  Additionally, perhaps an executive from the hospital could explain what happens on holidays and weekends in terms of medical coverage since those are times which experienced patients have come to dread.  The practice of Pain Management should also be explained from the perspective of its availability, how a patient can initiate it and how these hospital physicians might interact with a patient’s Private Pain Management Physician.   Naturally, Emergency Hospital Evacuation Plans should also be explained.

These Hospital YouTube Channels should also include Patient Testimonials during which patients can contribute their thoughts regarding their hospital experiences, their hospital roommates, what they miss most about being hospitalized, what they can’t wait to do when they get out of the hospital, etc.  Patients should be approached by hospital executives with Flip Cameras when they are utilizing the 22 hours I mentioned above, i.e., while they are walking round the Unit Floor as part of their post-operative recuperation.   Patients should also have access in their room to a simpler way of notifying hospital executives that they would like to contribute a Testimonial to the Hospital’s YouTube Channel.  Patients should never be promised that their contributions will be aired because there will always be an editing process and while the hospital should most definitely post unflattering videos if they are well-reasoned and seemingly a patient’s true and intelligently articulated opinion, the hospital cannot guarantee that all patient content will be aired due to reasonable standards of taste and style.

The goal of all YouTube channel videos, however, should be to humanize the “Hospital Patient Experience.”  By doing that, I can then make the argument that these YouTube efforts towards modernizing the “Hospital Patient Experience” are now commensurate with the perpetual positive contribution of technology and research to improved patient care.

Bringing the Hospital’s YouTube Channel into the Patient Room

During a recent “Health Care Social Media” TweetChat a thoughtful participant asked me about how this YouTube idea could be utilized by an 85 year old Patient?  I thought: “good question with an easy answer.”  After all, hospitals need to update those looped 1950s-styled videos presently on the televisions in patient rooms.  Let’s face it, we no longer need to see how Mr. Main Street Doctor performs a colonoscopy or what open heart surgery looks like – especially when the videos look like they came directly out of the TV Show “Mash” as if they were filmed sometime around the Korean War!  Accordingly, Hospital YouTube Channels should be piped into EVERY patient room and even looped on a channel just like the aforementioned brutally boring shows so that 85 year-old patients will be entertained, engaged and informed.

Conclusion

The power of Video and modern technology is at a stage where it can make a meaningful difference in the “Hospital Patient Experience” and for the most part, it is FREE.  “ROI” analysis needs to be replaced, at least at this infancy stage of Social Media, with applications of Logic and Humanity.  Finally, hospitals who don’t take advantage of this relatively easy opportunity to balance the quality of the “Hospital Patient Experience” with the expensive research and technology-driven increased quality of Patient Care have no business calling themselves “Patient-Centric” when the term “Prison” is more apropos.

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

Crohn’s Disease Cologne & “Counteracting Spray”

This is a 4-minute Parody Video of the Late Night TV Commercial about “Crohn’s Disease” which seems to have the best of intentions but nevertheless winds up stigmatizing those with Crohn’s as desperate people forever in fear of not being able to find a bathroom when they need one!

As I have been battling Crohn’s Disease for almost 30 years and on June 11, 2012, I will be undergoing my 17th surgery (and 200+ hospitalization), I am well aware of the seriousness of Crohn’s, Colitis and IBD. In that regard, I hope people similarly affected by Crohn’s get some comic relief from this Video.

© Copyright 2012 Michael A. Weiss

eBook – “Confessions of a Professional Hospital Patient”

Personal Candor of my Medical Book makes it Funny & more Interesting

Up until only a few years ago, when people began using “Health Care Social Media” (“HCSM”) to help one another with their shared medical maladies, people weren’t publicly “Candid” about their medical conditions for fear of obvious or subtle retribution by their employers or because of insecurities regarding the possible or probable perceptions of their significant Other. Thankfully, the “anonymous intimacy” of Virtual Patient Communities & Social Health Networks, like Crohnology.com, and other patient-preferred HCSM “platforms” has changed that to the point where patients often reveal more important medical details online than they do in the sterile and confidential confines of a Doctor’s office. This seems counter-intuitive but being a patient myself I can attest to this phenomenon.  I suspect it is due to the more relaxed “environment” of chatting online while sipping a relaxing glass of wine in comfortable clothes as opposed to coming in from the cold and immediately having to get naked and then change into Patient Gowns, the design of which hasn’t changed since Thomas Jefferson had his first prostate exam.

By the same token, there have been many Healthcare Books written which detail how to Cope with, or Manage, Chronic Illness, but few of them are based on 100% “Real,” “personal” or Candid interactions for these very same, understandable, retribution and insecurity reasons.  However, I never bought into these fears because when you have a chronic illness it does not define you; it merely becomes another of your character traits, just like being funny, attractive or hard-working.  Therefore, I decided in 2001 to write about the Real account of my trials and tribulations with Crohn’s Disease so that others with a similarly debilitating and painful Chronic Illness could relate to my struggles, both in and out of the hospital.  I also thought that a book intending to be helpful to others about these types of particularly dull and niche subject matters should exhibit “personality” and be funny and inspiring so that readers are more likely to remember how, for example, I handled things, both successfully and unsuccessfully.  Then readers are more likely to truly learn from my experiences.  This was the impetus for me writing the book, “Confessions of a Professional Hospital Patient,” which was released in eBook format only a few days ago.  The eBook Selling Price is $3.47.  (The eBook has also been configured to work with Barnes & Noble’s “Nook” device.)

Authenticity is the Ultimate Teaching Tool

Last week, when the “Confessions of a Professional Hospital Patient” eBook came out, I was trying to figure out what has made the Book so interesting and entertaining to others and an “evergreen” seller since 2001.  Well, the other night, while participating in a mental health social media TweetChat, I commented that good Blogs are written by people who make entries that are thought-inspired as opposed to obligatory in nature.  For example, people who feel they must blog everyday will eventually lose readers because I think we find Blogs interesting due to how the bloggers describe their handling of anger, frustration, anxiety, fear and other emotions which we all experience.  As a result, while Blog entries motivated by these types of common emotions may not be published every day or even every few days, when they are published, their “authenticity” produces interesting content.

During this TweetChat, when I was concentrating on reading and writing about the Mental Health Topics introduced by the Moderator, I realized that I didn’t hold anything back in “Confessions of a Professional Hospital Patient” because “authenticity” is what I was aiming for since I wanted people to have no doubts as to my veracity so they could relax and absorb the material.  It’s like when I taught a class on “Negotiating in the Entertainment Industry” to a group of night students already working in the entertainment industry who were also enrolled in this special “Media MBA Program” partially funded by their respective employers.  The first night of class I told the 50 or so students that unless I felt the following rather generous grade policy was being abused, everyone would be getting a semester grade no less than “B” because my goal was to TEACH them about “Negotiating in the Entertainment Industry” and I thought the most effective way to do that was by having them not worry about grades so they could simply sit back, listen and LEARN.   Without realizing it at the time, I think I used the same approach in my Book and it seems to have worked.

Mainstream Reviewers – “laugh out loud funny” & “wonderfully inspiring”

When “Confessions of a Professional Hospital Patient” first came out in July, 2001, I was shocked at how well it was received by the mainstream Press since it was about the niche and seemingly “dry” subject matters of Crohn’s Disease and Chronic Illness.  But readers/reviewers of the Book consistently commented that it was “laugh out loud funny” and “wonderfully inspiring.”  That made me feel fantastic because if THEY liked it, I knew my fellow “Crohnies” and Chronic Illness comrades would learn a great deal from my experiences.  In that regard, I have received from these chronically ill folks (and from their families) at least one communication a week since 2001 thanking me for helping them, inspiring them or in many cases, for changing their lives.  To continue to receive notices like that is an honor I can’t even describe other than to say they make having written the Book an incredibly rewarding experience, of which I will always be proud.

As these mainstream reviews were published, I somehow got on NBC’s “Today Show” and my Book was seriously “taking off.”  Publishing public relations agencies then began calling me me about how they could get me on television shows like “Oprah” and “Larry King Live.” I eventually gave in to one of them so I could at least seek those rather lofty and once-in-a-lifetime goals.  Long story short, the first thing I did was what they called a “Radio Satellite Tour” during which I gave phone interviews about the Book to the leading morning drive-time radio shows in key cities across the United States.  We started in the East Coast at 7:00 AM EST and I sat by my phone until 1:00 PM EST as we gradually worked our way across the country to morning drive-time radio stations in California.  Some radio interviews were also taped for broadcast later that week.  However, it didn’t much matter in the end as the radio interviews all took place on Monday, September 10, 2001, one day before the world changed and “Confessions of a Professional Hospital Patient” would become the least of anyone’s pressing morning radio topics to discuss.  All in all, it was a rather humbling experience to go from possibly appearing on “Oprah” and CNN’s “Larry King” to returning to being a full-time Entertainment Attorney, in the span of 24 hours.  While I was initially disappointed in the opportunities I lost, I quickly “turned the page” (pardon the pun) and focused on nothing but the people who tragically perished in the events of 9/11 and the brave men and women in the Armed Forces who would be risking their lives to defend my freedoms for years to come.

“Your Mom CAN’T read my Book – it’s too Personal!!!”

A funny recollection I have of marketing the Book and appearing on a variety of National and Regional Network and Cable Television Shows had to do with my girlfriend at the time.  I hadn’t yet met her Mom but meant to as soon as I had a free moment.  That gives me the creeps just writing such an arrogant excuse but I had made plans to meet her Mom several times but unfortunately had to cancel them as I never expected my Book to get the amount of widespread Press Coverage it received and I had to take advantage of it.  Thankfully, my girlfriend was very understanding and supportive but she was also very excited for us to meet.  In fact, she was so enthusiastic about it that she had her Mom purchase my Book in advance of our 1st scheduled dinner meeting.  She also told me this as we drove to her Mom’s house and I got so embarrassed because all I could think about was her Mom knowing all about my battles with Chronic Illness and Crohn’s Disease. Worse, she would learn about all my embarrassing personal details revealed in the Book.  I was squirming in my car just thinking about what would be going on in her Mom’s mind as she met me and probably scrutinized my suitability for her beautiful daughter.  As we got closer, my girlfriend just laughed and said something to the effect of: “It’s so funny that you are paranoid about what MY Mom will think after reading your Book when you’ve already discussed the most intimate details of your life on the “Today Show,” MSNBC and radio stations all across the country.”

I’ve learned over the years that my then-girlfriend’s point that day in my car about her Mom is a major attraction of “Confessions of a Professional Hospital Patient” as it’s really a true and authentic depiction of my life and my funny, sad, poignant, embarrassing, inspiring and frustrating battles with Crohn’s Disease and Chronic Illness.  Damn the torpedoes!

Click here to purchase Paperback - “Confessions of a Professional Hospital Patient”

Click here to purchase eBook - “Confessions of a Professional Hospital Patient”

EHRs, Crohn’s Disease & Chronic Illness – Viewer Feedback #1

EHRs, Crohn’s Disease & Chronic Illness – Viewer Feedback #1

This “Medical Minute” Episode is the First “Viewer Feedback” show. In it, I share what I have learned from the many Comments my Videos elicit from their diverse audience. In Viewer Feedback Episode #1, I share Physician thoughts on Electronic Health Records, Viewer comments on Raising Awareness of Crohn’s Disease and the thought-provoking Tweet of a chronically ill person.

For more detailed tips, analysis and funny Patient “war stories,” please go to Amazon.com (or BN.com) and purchase my critically-acclaimed book, “Confessions of a Professional Hospital Patient.” Thank you.

Copyright (c) 2012 Michael A. Weiss All Rights Reserved

“The Medical Minute” – Understanding the often Long Wait at the Doctor’s Office

 Have you ever made an appointment with a Doctor and he or she sees you on the exact time of your appointment?  Probably Not.  This 1-Minute Video explains why that often happens and it has more to do with being a Considerate Patient than anything else.

This Video is one in a Continuing Series of SHORT VIDEOS (i.e., in and around 1-2 minutes) which provides helpful insights and information regarding Healthcare, Chronic Illness and the Practice of Medicine.

Copyright (c) 2012 Michael A. Weiss  All Rights Reserved

For more detailed tips, analysis and funny “war stories,” about navigating our healthcare system, please go to Amazon.com (or BN.com) and purchase Michael’s critically-acclaimed book, “Confessions of a Professional Hospital Patient.”

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