Tag Archives: Hospitalizations

There is a Need for the “Crohn’s Disease Warrior Patrol”

Cropped CDWP Pic Dec 31 2012

For those faithful readers of my Blog and my other Health Care Social Media (“HCSM”) Platform journalistic contributions, I apologize for again writing about this “Crohn’s Disease Warrior Patrol” but something magical is happening relating to it and I need to share the experience.  It quickly went from an idea to a Blog entry to an aspiration and then to reality, when a very sick hospitalized 9-year old boy named Damon was understandably having difficulties coping with having to deal with two (2) Ostomy Bags while being treated for a variety of emergent digestive disorders.  More specifically, I had coincidentally recently written a Blog entry about the idea of this Crohn’s Disease and Inflammatory Bowel Disease (“IBD”) “Hospital Patient Visitor Ambassador Program” when I was contacted via Facebook about Damon and how it would be great if I could find someone with an Ostomy who could come with me to visit with him in the hospital to cheer him up and let him know that there is life after such an experience or diagnosis.  That’s when I met up with Marisa Lauren Troy and Jeffrey LeVine and we had that lovely visit with Damon last Sunday, December 30, 2012, at a Children’s Hospital in Westchester, NY.  Since then, Damon’s spirits are MUCH better and it seems his physical problems are also beginning to improve.

Overwhelming Encouragement & Participation by “Crohnies” and “IBDers”

Once we began to post pictures of our visit with Damon, I began to receive emails and HCSM communications from Crohn’s and IBD patients from ALL OVER THE WORLD encouraging me to move forward ASAP because they saw this as a wonderful response to a sorely needed service.  Everyone seemed to remember the horrors of their hospitalizations and the terror they would have avoided had they been visited by veteran “Crohnies” and “IBDer” folks like me, Marisa and Jeffrey.  I was overwhelmed by not only the sheer amount of messages and HCSM postings but also by the 100% POSITIVE and ENCOURAGING nature of each and every message.  I felt like I was witnessing the moment when someone’s Chocolate met someone else’s Peanut Butter and Reese’s Peanut Butter Cups were born!  It was a warm feeling knowing that I had conceived something that actually made a difference for hospitalized Crohn’s and IBD Patients, their doctors, hospitals and various related organizations such as Pharmaceutical Companies, and Crohn’s and Colitis Foundations, Chapters and Charities.  I was also constantly reminded of the “business side” of forming the “Crohn’s Disease Warrior Patrol” when incredibly altruistic people in HCSM contacted me with invaluable knowledge and experience encouraging me to seek funding via “Crowd Funding” methods on the Web such as Kickstarter.com, Indiegogo.com and MedStartr.com.

Moving forward with Crowd Funding, Sophisticated Website and forming a Non-Profit

With only so many hours in the day and me having to also battle my own Crohn’s Disease issues, it’s been quite the challenge to keep up with the seemingly 24-7 barrage of people from all over the WORLD who have already signed up to be veteran members of the Crohn’s Disease Warrior Patrol.  Accordingly, I had no choice but to make this my top priority so you may not hear from me as frequently while I fill out forms, design a Business Plan and produce a Video which conveys the genuine need for the Crohn’s Disease Warrior Patrol and the intense participation interest already articulated by Crohn’s and IBD veteran or “warrior” patients.  While more ideas come to me whenever I can “steal away” some time from my computer to reflect upon this exhilarating experience, set forth below are my main objectives:

  • Hire my Web Designer to customize the present, very basic, website so that veteran patients can be matched with interested hospitalized Crohn’s Disease and IBD patients by zip code, while at the same time collect important data about the hospitalized patient so that hospital visit matches are age and Crohn’s/IBD condition/issue appropriate;
  • Professionally promote the website and service so that veteran Crohn’s and IBD patients Sign-up to be “warriors” and interested hospitalized Crohn’s Disease and IBD patients are aware of the “Crohn’s Disease Warrior Patrol” service;
  • Professionally promote the website to the various Crohn’s, Colitis and IBD Chapters and Charities and to the National Healthcare Media to raise the public’s awareness of the potentially severe and disabling aspects of Crohn’s Disease and IBD;
  • Through the growing National Publicity of the “Crohn’s Disease Warrior Patrol” and due to certain connections I have from practicing Entertainment Law for several years, recruiting certain Celebrities to make surprise inspirational personalized phone calls to hospitalized Crohn’s and IBD patients, where/when appropriate, and if possible;
  • Create memorable promotional giveaways for hospital visits such as a You’ve just been visited by the Crohn’s Disease Warrior Patrol t-shirt to give to hospitalized patients;
  • Develop an aspect of the “Crohn’s Disease Warrior Patrol” which generates money (e.g., selling t-shirts, mugs, educational speaking events, etc.) for the purposes of paying operating expenses and to donate the rest to help finding a cure to Crohn’s Disease and IBD; and
  • Creating an HCSM platform area of the “Crohn’s Disease Warrior Patrol” which educates Crohn’s and IBD patients, old and new, about the latest diagnostic and treatment advancements.

My Hospital Visit this week which galvanized my Determination

This past week I made a hospital visit to a “friend of a friend” who, as I was to pleasantly learn, is like a kindred spirit.  We like the same music, went to the same Summer Camp as kids and now, both unfortunately know what it’s like to languish in a hospital for weeks at a time with Crohn’s Disease diagnosis difficulties and Treatment Plans no more sophisticated than compassionately treating pain and hoping a miracle happens and all the Crohn’s symptoms magically go away.  I sat with this patient for almost two (2) hours and we bonded over many things but when she asked me my opinion I couldn’t help but be candid when I told her she’s being seen by the wrong doctor if after two (2) LONG hospitalizations within the past 3 months her doctor has no specific diagnosis and no Treatment Plan.  She’s very resilient, smart and has a great husband advocate who totally understood my point so plans are in the works to soon get her to a New York City doctor for a 2nd opinion.

It’s nothing personal against her present Long Island doctor and it’s not my bias toward Mt. Sinai Hospital in New York City but it has been my experience that diagnosing and treating complex Crohn’s Disease cases like hers, and mine, come down to numbers: i.e., the greater the number of these types of complex Crohn’s Disease cases seen by a doctor, the greater the likelihood of a quick, accurate and effective diagnosis and treatment.  In the New York City gastroenterology practice I was referring her to, they see more Crohn’s Disease cases than any other medical practice in the world.  With that increased patient interaction comes exposure to the strangest and most complex of Crohn’s Disease cases and that provides the patient with the best chance of being diagnosed and treated most effectively and efficiently.   Once she committed to implementing this 2nd opinion plan, she became hopeful that she will soon get an answer.  I was proud for having contributed to that new outlook because there may be nothing worse than lying in a hospital bed with such severe pain and obvious Crohn’s Disease or IBD symptoms only to be doubted by some medical professionals who get frustrated when nothing tangible appears on diagnostic tests to explain the patient’s uncomfortable plight and they then turn to the patient as the possible cause because nothing else makes sense.  That is a logical approach but it has proven time and time again to be counter-intuitive to Crohn’s Disease and IBD cases so I find it to be unacceptable.  Accordingly, my parting words to her and her husband were to be persistent and consistent in seeking answers, a diagnosis and a Treatment Plan.

The Unintended but Barbaric Nature of some Crohn’s Disease Hospitalizations

Not only did last week’s Long Island hospital visit add further validation for the need of a Crohn’s Disease Warrior Patrol, but it also reminded me of many of my ill-fated hospitalizations and that made me think about the thousands of other similar tortuous Crohn’s Disease and IBD difficult hospitalizations.  Please understand that I do not blame anyone for this and I only appreciate the determined and dedicated efforts of all the medical professionals who try to help mitigate the inherent difficulties of a Crohn’s Disease or IBD hospitalization.  It is just that Crohn’s Disease and IBD will always be “Invisible Illnesses” as demonstrated by the well-intended, but almost barbaric, manner in which Crohn’s patients are diagnosed & treated. Most healthy people or even loved ones of Crohn’s and IBD patients don’t know this because they logically assume there’s a definitive “test” and if it’s “positive” – you’ve got Crohn’s or IBD.  NO, nothing can be further from the truth.  You often “present” at the hospital, or more likely the emergency room, with such painful symptoms that diagnostic tests can’t even be conducted on you until you’ve been on horrific (i.e., from a side-effects perspective) Intravenous anti-inflammatory medications (i.e., Prednisone-type drugs) for a few days. Then, because Crohn’s Disease is almost “personalized” in how it affects each patient, the doctors often must work in the “grey” when their scientific training tells them to look for “black and white.”

Sometimes you get lucky and a Picture (i.e., X-ray, MRI, CT scan, etc.) tells the story. But more often than not, you are all alone in that grey area fending off suspect looks from medical professionals, who should know better based on years of Crohn’s Disease and IBD cases being perplexing. In a worst case scenario, if some doctors can’t find what they need in order to substantiate their hospitalizing a Crohn’s or IBD patient, they start “blaming” the patient for either having these strange, intermittent and inconvenient symptoms, making them up or exaggerating them. That’s when Crohn’s and IBD patients must be persistent AND consistent in seeking a Diagnosis and a Treatment Plan. It’s even okay if a doctor admits he’s stumped and refers the patient to a different gastroenterologist who sees more complex cases and thus might be able to provide that diagnosis and treatment plan – even if it’s merely a “trial and error” one.  This is why I always tell Crohn’s and IBD patients that if they are not “collaborating” with their doctors then they are either not communicating properly or they need to be treated by different doctors.

“Network Television” Crohn’s Disease “Biologic” drug ads make IBD seem as innocuous a Disease as Erectile Dysfunction and that is a DISGRACE

What typical people also don’t know is that the drugs advertised on Network Television which portend to “treat” “Severe Crohn’s Disease” and IBD are actually not that successful and, more importantly, they “can” cause side effects which can be lethal (e.g., I almost died from one such “Biologic” medication which eventually caused me to have to go on Chemotherapy to treat a possibly fatal Lung Condition known as “B.O.O.P.”).  Even if they are not life-threatening, the side effects can be as severe as many of the Crohn’s Disease symptoms. So why would a Crohn’s Disease patient take such drugs? My answer was: “I have no other choice because my body can’t sustain more bowel surgery.” But that was several years ago and unfortunately too many more Crohn’s Disease patients have suffered from these side effects such that my blood boils when I see a TV ad for one of these drugs because they casually stigmatize Crohn’s Disease out to be no more than an Erectile Dysfunction problem, which a pill can substantially resolve.  That’s just not true with Crohn’s and IBD as the success rate of the these Biologic drugs varies from 30% to 60% and even those numbers are deceiving because their “success” (i.e., placing the Crohn’s Disease patient into remission) may only last for a few years and then the devastating side effects may set in.  That Crohn’s Disease patient could then have additional autoimmune diseases and, as a result, much more serious and expensive medical problems.

There has been no tangible proof of a direct scientific link of these Biologic Severe Crohn’s Disease treatment drugs to poor success rates and devastating side effects and, in my humble opinion, I think that keeps these Pharmaceutical Companies selling “hope” in the form of a drug.  But if you converse with enough Crohn’s Disease and IBD patients through HCSM, you will encounter horror stories that will bring tears to your eyes.  What started out as Crohn’s Disease turns into several more autoimmune diseases and some patients, like myself, are left with such severe and unpredictable joint pain and decreases in respiratory capabilities that there are days we cannot get out of bed.  Thus, the cost of these glorified Biologic drugs advertised on TV to treat Severe Crohn’s Disease often comes at a price which no-one can afford.

Please SIGN-UP for the Crohn’s Disease Warrior Patrol and help me at least Raise Awareness of the seriousness of Crohn’s Disease and IBD

If you have Crohn’s Disease or IBD, I know you “get” the importance of what I am writing about.  Besides helping Crohn’s and IBD patients through difficult hospitalizations, my goal is to raise the awareness of the seriousness of Crohn’s Disease and IBD so that in the worlds of Research and Fundraising they are given the same amount of respect and attention as such devastating diseases as Breast Cancer, Aids, Multiple sclerosis, Parkinson’s, Alzheimer’s Disease, Rheumatoid Arthritis, Amyotrophic Lateral Sclerosis (“ALS”), etc.  Maybe then, from information acquired via global patient-to-patient communications, a Cure for Crohn’s Disease and IBD will emerge. Until then, please be patient while I set-up the Crohn’s Disease Warrior Patrol and if you haven’t SIGNED-UP yet as a veteran or “warrior” Crohn’s Disease or IBD patient, please do so by visiting CrohnsDiseaseWarriorPatrol.org.  Please provide as much information as possible which will enable me to create a database to make the best matches of veteran patient to hospitalized patient.  Then, once I get a Crowd Funding website up and running, I will spread that word and Donations would be greatly appreciated so that I can start working on achieving the articulate objectives stated above.

Thank you for your interest, support and incredible encouragement.  The global possibilities of HCSM make it a technologically-powered grassroots Patient Movement and I intend to utilize it to help patients with Crohn’s Disease and IBD get the attention they deserve.

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MAW PPP Banner Dec 15 2012

 

 

Inaugural Hospital Visit of “Crohn’s Disease Warrior Patrol”

In this case, a Picture truly does say a thousand words so I will keep this brief.

A bunch of folks on Facebook with Crohn’s Disease and Inflammatory Bowel Disease (“IBD”), were notified by Ivy Lindsay of “Comfort Ostomy Covers by Ivy” that a 9-year old boy named Damon had been hospitalized SINCE NOVEMBER 1, 2012 with a variety of life-threatening ailments which HIPAA prevents me from disclosing.  However, Damon BEAT THE ODDS and continues to get better although he will be battling for a while.  Part of his battle involves areas which we Crohn’s and IBD veterans or “Warriors” are familiar with.  Hence, the inaugural “Crohn’s Disease Warrior Patrol” hospital visit at Maria Ferari Children’s Hospital at Westchester Medical Center in Valhalla, New York.

Ivy Lindsay orchestrated things on Facebook and she and I spoke on the phone on Saturday, December 29, 2012.  After being told the specifics, Marisa Lauren Troy and Jeffrey LeVine immediately volunteered to come with me on Sunday, December 30, 2012, to visit with Damon and his two (2) Moms.  All we wanted to do was bring some knowledge and comfort to them and help alleviate the enormous stress of being a hospital patient or loving a hospital patient.  Thankfully, our visit seemed to work as we each shared our respective experiences with Damon and his Moms and, before we knew it, Damon was smiling a bit and even willing to stroll on over to the couch with his IV Pole and various other hospital “attachments” to take the above picture.  We also had the privilege of meeting and getting to know some extraordinary people in Damon and his Moms.

In reaction to the posting of the above picture on various Health Care Social Media Platforms, the outpouring of wonderful messages, gestures, thoughts, etc. regarding Damon has been INCREDIBLE.  Some have even responded with wanting to send “care packages” of video games and the like.  If you want to do that for Damon, please just contact me and I will pass it along in terms of where to mail it and whatnot.

If you are interested in helping the Non-Profit Organization we have built to make these hospital visits possible, please visit http://crohnsdiseasewarriorpatrol.org and click on “Donate” / “Sign Up Here” tab.  Or you can just click on the Screenshot Picture below.

Thanks and have a Happy and Healthy New Year. :)

 

 

 

Announcing “Crohn’s Disease Warrior Patrol”

In one of my favorite “West Wing” episodes, (Season 2, December 20, 2000, 32 Noël), the White House Chief of Staff character Leo McGarry (played by the late John Spencer) tells White House Deputy Chief of Staff character Josh Lyman (played by Bradley Whitford) the following story as he tries to help him address his Post-Traumatic Stress symptoms from a shooting he was badly injured in:

This guy’s walking down the street when he falls in a hole. The walls are so steep he can’t get out.

A doctor passes by and the guy shouts up, ‘Hey you. Can you help me out?’ The doctor writes a prescription, throws it down in the hole and moves on.

Then a priest comes along and the guy shouts up, ‘Father, I’m down in this hole can you help me out?’ The priest writes out a prayer, throws it down in the hole and moves on.

Then a friend walks by, ‘Hey, Joe, it’s me can you help me out?’ And the friend jumps in the hole.

Our guy says, ‘Are you stupid? Now we’re both down here.’

The friend Joe says, ‘Yeah, but I’ve been down here before and I know the way out.’”

Being hospitalized for ANY chronic illness or condition can be a lonely and depressing situation.  Since Crohn’s Disease and Inflammatory Bowel Disease (collectively referred to as “IBD”) can result in repeated, painful, emotionally exhaustive, unpredictable and difficult hospitalizations, the IBD hospital experience can be intensified to the point where the patient feels like a lonely, pin-pricked, Leper.  As if that isolated and ostracizing feeling isn’t enough, the IBD hospital patient must also often cope with a very uncomfortable “NG tube” forced down his/her nose to alleviate the intense abdominal pain and he or she must move around tied to a pole from which hangs a heavy machine which pumps medication and nutrition through his or her veins.  It’s happened to me over two-hundred (200) times in my 30 years with Crohn’s Disease so I know how physically, mentally and emotionally challenging it can be despite wonderful visits from friends and family.

Many people and organizations with the sincerest of intentions profess to want to “help you through the hospital experience,” but as we all know, and as demonstrated by the “West Wing” story above, nothing can substitute for that “normal feeling” you get, when you are visited in the hospital by someone who’s been, where you are.  That’s what gave me the idea for the “Crohn’s Disease Warrior Patrol.”

The “Crohn’s Disease Warrior Patrol” will be a Charitable Endeavor matching interested Crohn’s Disease and IBD Patient “Warriors” with interested local hospitalized IBD Patients to provide them with comfort, experience, personal patient stories, a hug, a smile, a laugh and an overall cheerful hospital visit to let them know we are in this fight TOGETHER.  It is a technology-powered grass-roots “IBD Patient Movement.”

There is much to be done to set the “Crohn’s Disease Warrior Patrol” into motion but like anything that truly makes a difference, it starts with small steps, dedicated people and some generous benefactors.  In that regard, I have set-up the temporary website at www.crohnsdiseasewarriorpatrol.org and will have my Web Designer Extraordinaire soon refine it so that Patients and Warriors can be matched by zip code, and information can flow freely and safely.  There will also be informative content on the site, and in the process of facilitating Crohn’s Disease patients helping other Crohn’s Disease patients, I hope to raise Global Awareness about Crohn’s Disease and Inflammatory Bowel Disease.  I’m not an organization or a corporation; just a veteran Crohn’s Disease patient who understands that it takes one, to know and comfort, another one.

If/when you visit the website, please click on the “IBD Patient Movement” to learn a bit more of the details.  Among those details is the promise that ANY Patient or Warrior Contact Information obtained through the website or the Crohn’s Disease Warrior Patrol “Patient Movement” will be used SOLELY for the purposes set forth above.  You can then submit your Contact Information and type out a message indicating your status (i.e., Patient, Warrior, location of hospital, etc.) and we will try to expeditiously match zip codes within a hopefully fast-growing database of interested Crohn’s Disease and IBD patients. 

Finally, and as stated above, this is a Charitable Endeavor, but it takes some money to set up the proper non-profit, tax-exempt business entity, pay the web designer and maintain the site/service.  I wish I could fund this myself but because of Crohn’s Disease, all I have to contribute is my sweat equity, but that is my pleasure.  Therefore, if you are so inclined to help us out financially, please understand that any financial contributions will be considered “gifts” until we are able to pay/consult with an attorney to form the appropriate non-profit, tax-exempt business entity.  Thereafter, the Crohn’s Disease Warrior Patrol will operate just like any other charity.  That said, ANY financial contributions would be greatly appreciated and they can be made in the form of checks made payable to “Crohn’s Disease Warrior Patrol” and mailed to me, Michael A. Weiss, at 184 Zeppi Lane, West Orange, New Jersey, 07052.  My email address specifically for this charitable endeavor is crohnsdiseasewarriorpatrol@gmail.com; my Twitter handle is @CrohnsIBDWarrior.

I thank you for your interest and support.

Hospitals “Feel Like Prison”

 

This is a 4-minute Video snippet of a WEGO Health-sponsored  “Patient Panel” which focused on the “Hospital Patient Discharge Process.”  I was asked to participate in the Panel due to my vast and lovely experiences being “Discharged” from over 200 hospitalizations as a result of 30 years battling Crohn’s Disease.

I’ve worked with WEGO Heath before and each time I am more impressed with their corporate style.  It’s probably because they let me, be me, and never filter my opinions.  Let’s just say WEGO Health appears to be a very cool company because they practice what they preach: “Empowering Health Activists to Help Others.”  We need more companies like WEGO Health to provide these types of Patient platforms from which Health Activists can convey the “Patient Perspective.”

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

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”

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

The Power of Crohn’s Disease

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

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

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

 A Correct Diagnosis of Crohn’s Disease

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

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

Crohn’s Disease Recurs which tends to negate Surgery

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

Crohn’s Disease Medications

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

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

Cortisone or Steroids: (Prednisone, Budesonide);

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

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

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

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

Why so many Crohn’s Hospitalizations?

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

Finding the RIGHT Crohn’s Surgeon FOR YOU

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

The Crohn’s Disease Surgeon – What to Expect

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

The Crohn’s Disease Surgeon – What to Ask

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

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

Now, you are ready for surgery.  Good luck.

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Reprise – You Know You Are A “Crohnie” when …..

A “Crohnie” is a person with Crohn’s Disease. However, given the similarities in the hassles, challenges, health insurance codes and the often excruciating pain associated with Ulcerative Colitis (“UC”), Irritable Bowel Syndrome (“IBS”), Colitis and the “catch-all” Inflammatory Bowel Disease (“IBD”), Crohnies view UCers, IBS, IBD and Colitis folks as much respected Brethren and thus, fellow “Crohnies.”  To the Crohnie, each is like a “Brother from another Mother” and therefore the term “Crohnie” must include them.

Accordingly, as a moving homage to Redneck Comedian Jeff Foxworthy:

You know you are a ‘Crohnie’ when….

You know You Are a Crohnie when you believe, as per Doctor’s Orders, that Vodka is a permitted “Clear Liquid.”

You know You Are a Crohnie when your Twenty-Something Nephews think they can Fart at your House with impunity.

You know You Are a Crohnie when you rationalize taking the drug Prednisone as a license to eat anything, at any time.

You know You Are a Crohnie when you rationalize taking the drug Prednisone as a license to act like a lunatic.

You know You Are a Crohnie when you always have a Roll of Toilet Paper in Ur Car.

You know You Are a Crohnie when Turnpike “Rest Areas” are really fodder for Great “Public Bathroom Disaster” Stories.

You know You Are a Crohnie when you are now confident enough that you can brag about funny Public Restroom stories & the number of toilets you’ve stuffed.

You know you are a Crohnie if you’ve given up explaining to friends why you can eat at a McDonalds, White Castle or In-N-Out Burger with no problem but still can’t eat popcorn or a healthy salad without having a Crohn’s flare-up.

You know You Are a Crohnie when you are watching TV with your Mom and both of you have your own respective Air Freshener Spray Cans.

You know You Are a Crohnie when said Air Freshener Spray Cans are BOTH aimed at YOU, ready to spray, “with the safety off.”

You know You Are a Crohnie when you set the dinner table with a knife & fork but all you’re “eating” is “Ensure.”

You know You Are a Crohnie when all you own is Black underwear.

You know You Are a Crohnie when the glove compartment AND the trunk of your car both contain Imodium.

You know You Are a Crohnie when you are less embarrassed buying Enemas than Condoms.

You know You Are a Crohnie when you know “Milk of Magnesia” doesn’t taste like “Milk” at all.

You know You Are a Crohnie when you’ve become an expert of the potency of the different brands and scents of Air Fresheners.

You know You Are a Crohnie when you look forward to hospitalizations because there you can fart with impunity.

You know You Are a Crohnie when people get you Gift Certificates to your favorite Pharmacy during the Holiday Season.

You know You Are a Crohnie when you must own an industrial strength “Snake” because no Plunger can free your Home Toilet of the occasional large “log.”

You know You Are a Crohnie when you even designate a “Home” Toilet.

You know You Are a Crohnie when you bring your own pillow to the Hospital.

You know You Are a Crohnie when you experience euphoria at a rock concert or public sporting event after passing silent but potent gas, estimating its invisible airborne travel time and then seeing it affect the olfactory senses of Sections of People, one Patron at a time.

You know You Are a Crohnie when you can discern between different Air Freshener Spray Scents to obtain the most powerful one.

You know You Are a Crohnie when your abdomen sometimes feels like you’ve been trapped underneath an earthquake-ravaged building and all of the weight is on your torso.

You know You Are a Crohnie when no matter how many times you tell people that you are not feeling well or that you are going through a Crohn’s flare-up they always respond: “But you look great!”

You know You Are a Crohnie when you reserve your airplane seat around the location of the plane’s bathroom.

You know You Are a Crohnie when the Transportation Security Administration (“TSA”) starts looking through your Carry-On Bags but gives up and waives you through the Gate after they see Dulcolax, Metamucil, Glycerin suppositories and three (3) changes of black underwear.

You know You Are a Crohnie when you run into an old friend while purchasing Stool Softeners or Laxatives and you attribute the purchase to your kind, harmless Mom because, after all, “she is getting on in her years and ….”

You know You Are a Crohnie when you tell someone you have “Crohn’s Disease” and they ask if it is contagious.

You know You Are a Crohnie when you tell someone you have “Crohn’s Disease” and they ask: “Is that “the Bathroom Disease?”

You know You Are a Crohnie when you actually understand your Health Insurance Policy.

You know You Are a Crohnie when your mail is mostly comprised of Medical Bills, Explanation of Benefits (“EOBs”) from your Health Insurer and Dunning Notices regarding said Medical Bills.

You know You Are a Crohnie when you hand out Holiday Gifts to the Office Staffs of your various Doctors for all the special treatment they bestow upon you year-after-year.

You know You Are a Crohnie when you prefer certain flavors of Barium over others.

You know You Are a Crohnie when during a Crohn’s flare-up your Joints, Fingers and Toes feel like Voodoo Dolls randomly pricked by painful needles controlled by your arch rival from high school.

You know You Are a Crohnie when you sometimes get gas so powerful it feels like your butt is being lifted off the toilet bowl when you release it.

You know You Are a Crohnie when you know to shave both arms before being admitted to the hospital for the inevitable intravenous lines.

You know you are a Crohnie when you’ve learned to “embrace the suck” of these very challenging chronic illnesses & can laugh about it all.

You know you are a Crohnie when you finally understand that sometimes the Medical Treatment is temporarily worse than the Disease.

You know you are a Crohnie when you truly appreciate the interest, care and concern of friends and loved ones.

You know you are a Crohnie when you understand the vital importance of the support of friends and family.

You know you are a Crohnie when you realize that only your body is affected by the Disease and not your mind or your ability to laugh.

Finally, You know you are a Crohnie or that You love a Crohnie if you’ve read this far and for that, I am gratefulThank you.

by

Michael A. Weiss

Copyright © 2011 All Rights Reserved