How Anti-TNF Biologic agents treat Crohn’s Disease & Ulcerative Colitis

I recently posted this on Facebook as a “layperson’s” answer to someone with Inflammatory Bowel Disease (IBD) who asked if Anti-TNF drugs are basically analogous to chemotherapy and people seemed to respond extremely favorably to it as they indicated it provided them with a better understanding of this common but fairly complex issue.  Therefore, I thought I’d post it on my Blog to document my explanation for anyone in the future who seeks similar information.

While I am your ordinary 30-year Severe Crohn’s Disease patient who has been on all currently available medicinal therapies at one time or another (with the exception of “Entyvio”), I’ve also helped provide the “patient perspective” to various IBD-related scientific endeavors and that has helped me better understand how these biologic agents work to counteract the abnormally overactive immune systems in people with IBD.  I AM NOT A DOCTOR nor do I profess to be well-schooled in the complex biological mechanisms which seem to play a significant role in the development and progression of IBD, but I seem to have a basic and relatively simplistic understanding of this issue so that’s why I am sharing these thoughts.

But 1st – Biologics and IBD Doctors who have NO TREATMENT PLANS

Before sharing the aforementioned explanation, I must share a growing concern I have regarding Biologics which is focused at certain gastroenterologists who have no defined “treatment plan” and instead tell their appropriate IBD patients: “It is time to resort to the Biologics to better manage or control your Crohn’s Disease [or Ulcerative Colitis] to stave off surgery.  Which one do YOU want to go on?” 

In my humble opinion, providing the IBD patient with this “choice” of Biologic seems ludicrous since the main three (3) brand name Biologics, namely, Remicade, Humira and Cimzia, are literally different drugs; Infliximab, Adalimumab and Certolizumab pegol, respectively.  It is true the underlying rationale for the way in which these Biologics treat IBD is the same but they are administered differently, in different dosages and there are medical research studies with conclusions all over the place about whether one should be used before another or whether one is more efficacious in Crohn’s Disease rather than in Ulcerative Colitis or whether one is more effective in treating fistulas or abscesses or even about which one shows greater efficacy in treating IBD which occurs in different parts and levels of the diseased/inflamed gastrointestinal tract.

Biologics seem to affect many IBD patients differently

I know from personal experience how I experienced an anaphylactic reaction to Remicade after a few doses yet I know IBD patients who’ve been on Remicade since approximately 1998 without incident.  I also know I developed severe and disabling irreversible respiratory side effects after graduating to Humira whereas there are many other patients who never experience such symptoms or side effects.  Lastly, some IBD patients can be allergic to one Biologic but not to another one.  All of this information clearly demonstrates the possible different and seemingly “personalized” effects and efficacies of each Biologic on different IBD patients.

Therefore, it seems incumbent upon DOCTORS to make the choice of Biologic in treating severe or progressive IBD cases since it is they who have witnessed how each has worked in different patients and it is they who are privy to the numerous aforementioned studies about the different risks and benefits of each Biologic relative to certain IBD patient histories and/or to their respective known disease etiologies.   In that regard, all I ask is that these gastroenterologists act pursuant to a “Treatment Plan” which THEY devise based on their experience, knowledge of Biologic agents and their understanding of each IBD patient’s disease.  IBD patients who need Biologics to stave off surgery certainly have enough to worry about that they should not be tasked with figuring out which Biologic drug they should be taking for maximum effectiveness in treating their specific case of IBD.

IBD Biologics (immunomodulators) vs. Chemotherapy (or immunosuppressive) drugs

The potential side effects from Biologics can be as serious as those from chemotherapy but the underlying rational of how each treatment works is different. Biologics are referred to as Anti-TNF agents which specifically describes exactly what they do, that is, they slow down a certain protein/enzyme naturally created by the human body (namely, TNF) which is summoned by the body’s intestinal immune system to combat what it perceives to be threatening intestinal bacteria.  But people with IBD have intestinal immune systems which are “over-active” in that when they send TNF proteins to fix the problem and re-balance the bacterial components of the intestine, these TNF proteins either don’t know when to stop “fixing” the problem or they do so in such a way that they cause increased abnormal intestinal inflammation.  The consequences of this increased abnormal intestinal inflammation in people genetically predisposed to IBD can then initiate IBD or make those with IBD even sicker by way of more severe gastrointestinal problems or due to peripheral manifestations of IBD such as sacroiliitis, cataracts, inflammatory respiratory infections, virulent infections, organ failures, etc.

Soon after scientists definitively identified this role of TNFs in IBD, a few biologic drugs were created which effectuate a regulatory impact on these TNFs to prevent them from over-inflaming the intestine, which has scientifically known critical subsequent consequences causing or worsening IBD in patients who are genetically predisposed to it.  A problem with Biologics is that they are predicated on a theory tantamount to using a blowtorch to kill an annoying mosquito resting on a pillow.  More specifically, while these Biologics do exactly what they are supposed to, they are systemically administered and the aforementioned invented drugs which regulate TNF proteins can also evidently have a variety of deleterious effects on different organs and systems within the human body.

Why is there a problem with IBD Biologics?

It seems fundamentally sound to expect tampering with the human body’s chemistry (as in the case of regulating TNFs) to trigger reactive effects in other parts of the body, especially when the “tampering” is done systemically and not in a direct, targeted fashion, but the continued extreme suffering of IBD patients who had exhausted all other treatment options was understandably the priority in the creation of anti-TNF Biologic agents.  But it’s as if these Biologic drugs were created so myopically to influence one of the first major scientific IBD discoveries of practical and therapeutic significance that no one seemed to address the possible or even likely side effects of such potent body chemistry altering medication.  But I assume the FDA approved these Biologic medications because the Biologic drug manufacturers presented a statistically-relevant number of “studies” which convincingly indicated most people do not experience serious side effects from Biologic drugs which work exactly as designed in treating IBD and potentially creating a state of IBD remission.

That said, the side effects of Biologic agents have been known to cause medical problems more painful and debilitating than any IBD flare-up in the patients who are the unlucky ones in whom Biologics are either ineffective or cause dangerous allergic reactions or serious side effects ranging from liver problems to cancer to disabling and even lethal lung infections.

Summary

Accordingly, the possible serious side effects of immunomodulator IBD Biologic drugs occur differently than those resulting from the immunosuppressive side effects of chemotherapy. Notwithstanding the foregoing, there are numerous prestigious and comprehensive IBD research projects currently going on or being undertaken which acknowledge the aforementioned potential pitfalls and potential serious side effects of IBD Biologics and thus are focused on treating other known IBD intestinal triggers but with more targeted and potentially “personalized” drug therapies since no two cases of Crohn’s Disease or Ulcerative Colitis are seemingly alike due to the significant IBD causation role played by the complex interaction of genetics, the body’s immune systems and environmental factors.

Please share your comments regarding your experiences with Biologic Agents in the treatment of Crohn's Disease or Ulcerative Colitis.

Please share your comments regarding your experiences with Biologic Agents in the treatment of Crohn’s Disease or Ulcerative Colitis.

Entire 9/15/2014 Video Interview w/ Dr. Mark L. Chapman re: Inflammatory Bowel Disease

Inflammatory Bowel Disease Expert

Inflammatory Bowel Disease Expert

The people responsible for making this project a reality

It has been my pleasure to share the wisdom and experience of this brilliant Inflammatory Bowel Disease (IBD) expert who is one of the few gastroenterologists still practicing who was trained by Dr. Burrill  Bernard Crohn at Mount Sinai Hospital in New York City.  The wonderful and encouraging comments I’ve received from diverse Crohn’s Disease, Ulcerative Colitis and Indeterminate Colitis patients from around the world has completely validated all the hard work necessary to bring this ambitious project to viability. Accordingly, accolades are due to Dr. Mark L. Chapman, his staff, Mount Sinai Hospital, the NEW “Susan and Leonard Feinstein Inflammatory Bowel Disease Clinical Center at Mount Sinai Hospital,” my camera man and technical adviser, Dan Brumer, and my charity, the Crohn’s Disease Warrior Patrol.

The goal of interviewing Dr. Mark L. Chapman from Mount Sinai Hospital in New York City about all things patients need to know about Inflammatory Bowel Disease

My goal was to  take as much out of Dr. Chapman’s brain and get it on camera so that I’d could then edit it into easily consumable online portions of eight (8) short, topic-driven videos to help patients around the world who do not have access to such an knowledgeable, experienced, talented and dedicated physician regarding a disease which has created more questions than answers for the brightest medical and scientific minds spanning several generations and from both every conceivable prestigious academic research institution and practicing Crohn’s Disease, Ulcerative Colitis and Indeterminate Colitis doctors from the best medical facilities in the world.

The current pressing need is for safer, individualized, more targeted, more effective and less expensive IBD treatments or possibly an IBD cure or preventative genetic or biological  interventions

My aspirations with these videos seemed logical and obvious as I am an advocate for Inflammatory Bowel Disease, a 3o-year patient with Severe Crohn’s Disease and the Founder and President of a charity specifically designed to raise global awareness of IBD in the hopes that people around the world will better understand the multifaceted potential severity and pervasive effects of Crohn’s Disease, Ulcerative Colitis and Indeterminate Colitis such that these videos will only add to the current momentum to find safer, individualized, more targeted, more effective and less expensive IBD treatments or possibly an IBD cure or preventative interventions.  The need for such specifically targeted IBD treatments is now imperative because the systemic effects of the most efficacious current IBD treatments such as various immunosuppressive and biological agents are causing patients a significant number of severe side effects such that they are either trading in one disability for another or often opting for new, risky and unproven experimental therapies which are not sufficiently developed potentially causing even more serious problems.  Thankfully, however, Dr. Mark L. Chapman and Mount Sinai Hospital share my concerns and my “time is of the essence” motivation and their respective active participation in this project has been crucial.

Accordingly,  I have embedded the eight (8) videos below in chronological order from 1-8 and I’ve provided a succinct explanation for each so that there exists online a complete set of these videos which you can refer back to at your convenience.  Thank you for watching and sharing your feedback.

Video 1 of 8.  The length of the video is 8 minutes and 55 seconds.  

Video 1 defines the differences between Inflammatory Bowel Disease (IBD) and Irritable Bowel Syndrome (IBS).

 

 

Video 2 of 8.  The length of the video is 11 minutes and 18 seconds. 

Video 2 defines the differences between Crohn’s Disease, Ulcerative Colitis and Indeterminate Colitis.  

Video 3 of 8.  The length of the video is 10 minutes and 10 seconds. 

Video 3 explains the definition of Diverticulosis and how it differs from Inflammatory Bowel Disease. Dr. Chapman then explains the nuances involved with treating Pediatric Crohn’s Disease & Ulcerative Colitis patients.

 

Video 4 of 8.  The length of the video is 10 minutes and 59 seconds.

Video 4 focuses on the current contrasting and controversial styles of treating Inflammatory Bowel Diseases, i.e., “Top-down” v. “Bottom-up.”  Dr. Chapman also explains how he most effectively interacts with Crohn’s Disease and Ulcerative Colitis patients when they request certain biologic agents they’ve seen advertised on television. 

Video 5 of 8.  The length of the video is 9 minutes and 31 seconds. 

Video 5 focuses on the too-often long, arduous and stressful “diagnosis journeys” patients must take before they are properly diagnosed and treated for Inflammatory Bowel Diseases (IBD)  like Crohn’s Disease or Ulcerative Colitis. Dr. Chapman explains how he combats this decreasing occurrence by taking a compassionate and extensive Patient History, conducting a Physical Exam and carefully combing through all that was done previously in a patient’s case. While technological diagnostic testing for IBD is now state-of-the-art, the most accurate diagnosis still may depend on a simple, but thorough, Patient History. In that regard, Dr. Chapman shares his proven effective techniques for taking Patient Histories.

Video 6 of 8.  The length of the video is 10 minutes and 5 seconds. 

Video 6 focuses on how gastroenterologists diagnose Inflammatory Bowel Diseases such as Crohn’s Disease and Ulcerative Colitis. Dr. Chapman also explains how the simple, seemingly antiquated, “Small Bowel Follow Through” diagnostic test can still be quite effective, and in some cases, even more effective, than the latest technological diagnostic tests such as a Magnetic Resonance Enterography (MRE).

Video 7 of 8.  The length of the video is 11 minutes and 19 seconds. 

Video 7 focuses on a few “Viewer Questions” which seemed to be quite popular topics in various health care social media platforms amongst people discussing Crohn’s Disease and Ulcerative Colitis beginning with the recent troubling, but still rare occurrence of patients actually dying from Crohn’s Disease or Ulcerative Colitis. Dr. Chapman also explains how an IBD patient should interpret blood tests which are a common occurrence in the lives of Crohn’s Disease and Ulcerative Colitis patients especially given the potential side effects of the immunosuppressive and biologic agents currently given for treatment of IBD.  Dr. Chapman also shares his professional experience and insights with respect to treating IBD patients with the latest IBD drug, “Entyvio” or “Vedolizumab.”

Video 8 of 8.  The length of the video is 10 minutes and 42 seconds.

Video 8 focuses on the mystifying aspects of Inflammatory Bowel Disease (IBD) from whether or not Crohn’s Disease or Ulcerative Colitis is hereditary to the most promising IBD treatments currently being researched including stem cell therapy, small bowel transplants, fecal transplantation and personalized T cell immunotherapies.

Please share your comments regarding your experiences with Crohn's Disease or Ulcerative Colitis.

Please share your comments regarding your experiences with Crohn’s Disease or Ulcerative Colitis.

A Pain Management Doctor who should be a Radiologist!!

Recently I took my Mom to see her Pain Management Doctor.  As was the case the last few times she had an ordinary follow-up office visit, he was not there so my Mom was treated by a very thorough and kind Nurse Practitioner.  However, this time something was different about the office visit as it seemed the plan all along for the Nurse Practitioner to treat my Mom.  That probably would have been temporarily okay with my Mom had she been told this when she made the appointment with this doctor, who she is quite fond of.  But if my Mom knew she would only see this doctor during expensive pain-reducing “injection procedures,” she would likely use a different doctor for pain management.

The sneaky substitution of a Nurse Practitioner for my Mom’s Pain Management Doctor  

Having much experience with this medical specialty, I had assumed this doctor was unable to meet with my Mom the past few office visits because an emergency had popped up.  As a chronic patient, I completely understand that needs of other patients might occasionally supersede mine and thus I have great respect for patient emergencies and for the healthcare professionals who attend to them. However, just before we were walked out of the office to make the suggested 3-month follow-up appointment, I respectfully requested that my Mom would like to schedule the follow-up appointment with her DOCTOR. The very kind appointment person told me that was not possible.  I was literally puzzled since it was his compassionate and kind demeanor which attracted my Mom to this particular Pain Management Practice, and no disrespect to the wonderful Nurse Practitioner who had just treated my Mom, I thought it not unreasonable for my Mom to want to meet, and/or speak, with HER DOCTOR – at least every other Office Visit –  if emergencies kept getting in the way.

“We can’t guarantee you will see your Doctor at your next office visit …” [because he is too busy focusing on the more lucrative injection procedures which Medicare reimburses at a significantly higher rate than they do for office visits]

By asking to see her doctor for her next office visit, my Mom and I had stuck a nerve within this Pain Management Practice as apparently this doctor was only available to perform the more lucrative epidural injections and similar complex “injection procedures” and he appeared to only see patients for office visits when his calendar was not booked with these expensive procedures for which I am sure he is paid much more handsomely by Medicare than for the humdrum monthly office visit.  When I respectfully expressed my concern in this regard, the appointment person literally told me she was going to note in my Mom’s 3-month follow-up appointment entry in her computerized calender that my Mom “preferred” to see her doctor.  But then this appointment person politely told us we were not promised or guaranteed this would happen.  My instinctive reaction was something to the effect of, “You must be kidding me?”

[Okay, to the best of my recollection I got angry and while my comment/question was substantially the same, there was a definite “intensity” attached to my statement and my body language was one step short of being enraged by what I perceived to be the greed of this doctor and Pain Management Practice. That said, I did make it CLEAR that my frustrations were not at all targeted at this very polite appointment person and if the doctor were present I would discretely take this matter up with him.   But his availability is sketchy and unpredictable, ergo this Blog Post.] 

A Pain Management Doctor more concerned with Cash-flow than his Patients?

I knew this appointment person was simply following whatever procedure was taught to her but the content of her response triggered red flags within my mind about insensitive doctors who care less about patients than they do about cash-flow.  I further expressed my concerns and the 3 or 4 office staff at the front-end of this medical practice were completely silent, too silent in fact.  That’s when I knew it was reasonable to conclude that this Pain Management Doctor was merely providing his services to the highest reimbursed procedures and not to the neediest patients.  My Mom has had many of these “injection procedures” and this doctor has ALWAYS treated her with great compassion and care but even she realized what was going on at this medical practice.

Is it “Bait and Switch”?  Is it a “Conflict of Interest”? Or is it just plain Greed?

Is it not “bait and switch” to meet with your Pain Management Doctor only to be forever serviced in future routine office visits by either a Nurse Practitioner or a Physician’s Assistant?   Is it not possible that this doctor could be steering his patients to the more lucrative Medicare reimbursed “injection procedures” when merely prescribing simple monthly pain medications would suffice?

Bottom line

When you have office visits scheduled with your Pain Management Doctor but continually see healthcare professionals other than your doctor such as a Nurse Practitioner or a Physician’s Assistant, it is time to find a new Pain Management Practice.

I intend to respectfully confront this doctor during my Mom’s next office visit.  If he AGAIN is not there, I will have my answer.  Then I will share my concerns with him via letter so that he knows why my Mom is leaving his Pain Management Practice.  Moreover, I will suggest to him that he should have become a Radiologist instead of a Pain Management Doctor if he intended to minimize his interaction with live patients.

Comment on a Greedy Pain Management Doctor

Bullying of Crohn’s Disease & Ulcerative Colitis patients

November 6, 2014

While I think health care social media is such a powerful, resourceful and life-changing patient medium, I can’t help but get depressed each time I check in at Facebook and review the desperate but VERY REAL posts from brave members of the various Crohn’s/Ulcerative Colitis “Groups” to which I subscribe and read about patient after patient who must “fight” simply to be treated with dignity by their own physician.  This “fight” is either an internal one whereby they are forced to stand their ground and trust their bodies despite skepticism and contempt so palpable in the doctor’s office that it becomes the “elephant in the room” or it becomes overt when some doctors challenge their capacity to handle adversity, disappointment or pain.  That said, for the most part, there are now WONDERFULLY gifted, dedicated and compassionate Inflammatory Bowel Disease (IBD) doctors all over the world. But when I read these disciplined, intelligent patient Posts about such personally troubling emotional feelings resulting from seemingly experienced gastroenterologists telling them their TEXTBOOK Crohn’s or Ulcerative Colitis severely painful and/or disabling symptoms are “just in their head” – I want to cry about the barbaric diagnostic and treatment culture which STILL affects patients with Crohn’s Disease and Ulcerative Colitis.

The responsibility of making IBD Treatment Decisions can emotionally overwhelm IBD patients

I understand the skepticism of patients reading this who have life-threatening diseases facing life or death consequences or those with diseases so rare they aren’t even addressed by pharmaceutical companies because they don’t affect enough people to make such an endeavor profitable but I don’t know of another incurable disease like IBD whose recommended treatments are often prescribed based on the “possibility” of them working AND these same treatment gambles routinely cause medical problems which can dwarf the devastating effects of Crohn’s Disease or Ulcerative Colitis.  There is also something about the incurable “grey area” in which IBD resides that makes some gastroenterologists and colorectal surgeons feel entitled to manipulate IBD patients simply because they know more about Crohn’s or Colitis  or because “any” treatment which “may” help is better than the patient’s current reality of hopelessness and despair. Finally, physically and emotionally compromised Crohn’s Disease and Ulcerative Colitis are too often tasked with being forced to make so many impactful decisions about their care that it can cross the line of them truly making an “informed” decision.  The frequent unpredictable hospitalizations and constant suffering is often too much to bare for the patient.  When these patients must also assume cogent responsibility for making the difficult IBD treatment decisions, that’s when the non-intentional infliction of emotional distress could overwhelm them.  Sometimes it’s just a byproduct of an incurable disease which has no upsides but sometimes it’s caused by arrogant doctors who don’t care about the IBD patient’s emotional well-being.  When you think about healthcare professionals acting like that and you contrast it with the heroic selfless efforts of doctors and nurses who travel to West Africa without hesitation to help contain and eviscerate the Ebola Virus to help people they don’t know, at potentially grave harm to themselves, this is deeply disturbing.

The IBD Doctor “God Complex”

While I have been so lucky to be treated by unbelievably bright, caring and compassionate doctors and nurses in my thirty (30) years as a Severe Crohn’s Disease patient, I’ve also witnessed such galling arrogance in the practice of medicine that Alec Baldwin’s portrayal of a doctor with a “God Complex” in the movie “Malice” seemed more like reality television to me.

In my case it happened when a great surgeon, who had operated on me several times and been paid his fee each and every time, performed a simple surgical follow-up on me in his private office after I was discharged from the hospital for a few  weeks.  There wasn’t much for him to decipher other than whether or not I had developed an obvious infection and since I felt fine, I figured the appointment and exam would be uneventful.  I was wrong.  As he artistically salivated at his creative surgical genius on display in and around my belly-button, he understandably began making sure I had not developed an incisional hernia which had been the case with several prior surgeries.  In furtherance of that specific hernia exam and as he was medically-appropriate in holding one of my testicles in his hand, he looked up at me and said the following: “You know, there is still a $3,450.00 balance due on your account?”

Had that been the guy who fixes my car’s transmission, I would have driven my knee into his face.  But because I knew I might need him at some point in the future due to my extremely complex case of Severe Crohn’s Disease, I diffused the situation by joking about how he can’t be that big of an asshole in light of how much money I’ve paid him over the past few years.  He then loosened his grip on my manhood, confirmed I was doing just fine medically and got behind his throne of a desk to continue his money collection efforts.  Thankfully, I was somewhat of a Crohn’s veteran at that point and I was able to laugh about the despicable manner in which he treated me.  And please understand I never questioned his right to get paid his fee for the extraordinary surgical work he had performed on me.  But there is a time, place and manner in which to pursue collection efforts regarding his surgical fee.  Call me crazy, but, it is not the appropriate person, time, place or manner when your surgeon commences collection discussions of his surgical fee while he conducts an important follow-up exam and has your testicle in his powerful grip.

The necessary “Survival” Mental Mindset of “Doing Time” when hospitalized for Crohn’s Disease or Ulcerative Colitis 

I’ve written a candid and funny book about many of the dignity-deprecating situations Crohn’s Disease and Ulcerative Colitis patients are placed in during their frequent hospitalizations because when it first happened to me I was shocked at the cruel and inhumane treatment which seemed disproportionately prevalent among those specific conditions.  In retrospect, I think I wrote “Confessions of a Professional Hospital Patient” to save the money I would have had to spend seeing a shrink to decompress from all I had been exposed to. And it worked.  I grew thick skin and no future hospitalization scared me so long as I went into “survival mode” and mentally prepared to “do time” prior to my admission. But years later, I let my guard down at one of the world’s most well-respected medical institutions and internationally recognized brand names for innovative, life-saving, pioneering medical treatments, where I was confident my vulnerabilities as a patient with an incurable disease would be respected and not exploited.  To this day, I am still astonished at the “patient-irrelevant,” doctor-centric, myopic, arrogant and downright cold treatment I received there.  As soon as the staff realized my case was going to skew their post-operative efficiency statistics, I was medically treated like the numerical “outlier” who had altered their promotional efficacy aspirations.  It is also the ONLY hospital or medical facility in my thirty (30) years with Severe Crohn’s Disease which began a colonoscopy on me despite someone forgetting to sedate me and within seconds it felt as if the doctor was trying to drive a Buick into my body through my rectum.  I screamed in pain and that international signal of despair was not recognized by this schmuck so I kicked him in the face.  The colonoscopy was rescheduled.

The IBD Facebook Group Posts from Patients who continue to experience unnecessary emotional stress, humiliation and crude treatment from doctors and in hospitals 

I could go on and on with the nightmarish real life medical scenarios I have endured because of my IBD but I thought patients and doctors have evolved over the past few years such that being hospitalized for IBD is more of a “patient-centric” experience.  Regardless, the advances in diagnostic technology would seem to silence any remaining arrogance but EVERY DAY on Facebook in 2014, I read about MANY IBD patients going through similar humiliating and emotionally devastating experiences and I don’t understand why this continues to happen.  For example:

There’s an IBD doctor refusing to execute the appropriate social security disability paperwork because the patient refuses to try Biologic drugs for reasonable and rationale fear of their potential side effects such that the doctor said something to the effect of: “Well, I can’t help you with your social security disability application since ‘you haven’t tried EVERYTHING.’”

There’s a suburban Inflammatory Bowel Disease doctor with an office sign saying “Advanced Gastroenterology” yet he treats a VERY complicated case of Indeterminate Colitis (i.e., a patient with symptoms and manifestations of BOTH Crohn’s Disease and Ulcerative Colitis) by simply hospitalizing the patient every few weeks and doing nothing other than prescribing steroids and pain medications hoping the incurable disease will soon “learn it’s lesson” and leave on it’s own stead when he should be referring the patient to a more experienced Inflammatory Bowel Disease practice.

There’s gastroenterologists all over the world who refuse to prescribe narcotic pain medication or refuse to educate the IBD patient about the board-certified medical practice of “Pain Management” when his patient with Crohn’s or Ulcerative Colitis is in such severe pain she feels hopeless with no quality of life and comes to him in tears begging for answers.  Instead, he tells the patient the pain is “not that bad” or that there’s too many downsides to taking opioids for IBD to seek some semblance of a quality of life. [Again, call me crazy, but shouldn’t it be the chronic patient’s right to make an informed decision about managing his or her Pain or determining his or her possible Quality of Life?]

There’s compassionate Crohn’s and Colitis doctors treating patients for years and unfortunately they may have to recommend surgery at some point.  Temporarily, that passes the patient care responsibility to the IBD surgeon. But, I have seen NUMEROUS instances of IBD patients having successful resection surgeries and resuming their lives, thus putting them back under the care of their longtime treating gastroenterologist, yet when they subsequently experience terrifying and painful issues in and around the resection site which could be recurrence of their disease or “mechanical” issues like the development of strictures or adhesions, they call these doctors for an urgent appointment but are told to either go to the emergency room or wait SIX (6) WEEKS for the next appointment.  Waiting WEEKS to be seen by a doctor in such an instance could be life-threatening and the understandable impersonal, “band-aid” and triage nature of emergency room treatment is not appropriate for a patient with complex Crohn’s Disease or Ulcerative Colitis especially when they have already been hospitalized  Fifty (50) times and are also responsible for taking care of their children. [Shouldn’t the treating gastroenterologist try and carve out Fifteen (15) minutes in his schedule to help such a suffering patient and parent? Shouldn’t the potential emotional harm to the chronic IBD patient be factored into such rude  and impersonal decision-making?]

There’s hospitalizations from hell all because of one (1) health-worker who doesn’t understand the “nuances” of IBD such that they actually tell the patient they “look fine” and don’t need to be in the hospital despite the patient being unable to hold down jello after being in the hospital for two (2) weeks on high doses of intravenous potent steroids.  That said, nearly every nurse I have ever encountered has been the key to a successful and stress-free hospitalization but too often this type of IBD patient must figure out the hospital protocol for respectfully removing this healthcare worker from their case because being anxiety-ridden before every nursing shift change is no way to recuperate in a hospital from an intestinal obstruction so intense the patient still can’t digest jello after two (2) weeks of being on high doses of steroids.

There’s ego-maniacal Pain Management doctors who robotically treat different Crohn’s and Ulcerative Colitis patients in the same exact manner so that they are sure to cover their behinds with the DEA while not for a minute listening to the patient’s concerns and trying to utilize their formidable expertise to address that SPECIFIC IBD patient’s INDIVIDUAL problem. These same control freaks also unnecessarily tweak the IBD patient’s medication dosages for no reason other than to validate and feed their narcissistic personality disorders. [It is very difficult to find a compassionate and professional Pain Management doctor given the over-reaching, politically-motivated  laws which make it increasingly difficult for patients with chronic pain to get the medications they need in a responsible manner.  Perhaps, more importantly, this also makes the medical practice of Pain Management VERY DIFFICULT due to the stringent record-keeping requirements and other laws and regulations which add significant financial costs to operating such a medical practice. Because of this, I am SO grateful for the compassionate Pain Management Doctors who nevertheless decide to help people like me and SO MANY OTHERS who live with chronic pain.]    

Finally, there are different versions of the uncaring, “ultimatum IBD doctor” who, without any nuance or respect whatsoever, presents a terrified IBD patient with a “take it or leave it” proposition regarding their IBD treatment and the often physically or emotionally compromised patient must then make the best decision regarding drug or surgical treatment options where the short- or long-term side effects and complications of one option is potentially worse than those from each of the others.  Here’s a slightly edited version of a 2014 Post about this which was only edited to preserve the patient’s confidentiality:

I refused to go on a Biologic drug and my doctor refused to put me back on steroids, which had worked in the past. So my father called the doctor and told him he’s concerned that I’m not doing well and that ‘forcing’ treatment options upon me without educating me about the possible side effects and complications is a bit heavy-handed and intimidating to such a respectful longtime patient who has suffered enough that she doesn’t need emotional pressure from her own doctor.  As result, the doctor’s office called me and wants me to come back in. I don’t even know what to tell him. Is there something in the middle that doesn’t have as many side effects as the Biologic drug or the steroids? There has to be a middle-ground treatment option here. I don’t feel like my disease is bad enough to have to start with the Biologics and then possibly deal with their horrific side effects. I’m so confused and scared at the future of my disease.”  [I think it’s FANTASTIC this patient has such a supportive forum like a Facebook Group to vent like this and to seek information from other patients in similar situations but is it just me who thinks this particular doctor is not doing his job?  Is it just me who thinks this doctor is a bully?]

Sadly, these stories never end.  Often times, I am sought out to speak to some of these patients and it is truly my pleasure to try and help them but I am also disturbed at how they are being treated by their doctors.  If I hadn’t experienced similar despicable treatment by a few doctors first hand during Two-Hundred (200) hospitalizations and Twenty-Five (25) major surgeries for Severe Crohn’s Disease, I’d never believe these Facebook Group Patient Posts.  I imagine this happens with many different diseases which are incurable but the consistency and pervasive presence of these Crohn’s Disease and Ulcerative Colitis patient Posts on all health care social media platforms is alarming.  I don’t know the answers which will alleviate these horrific IBD patient concerns but I damn sure know it is a MAJOR problem which must be acknowledged and addressed by medical professionals.

Summary

I hope more doctors treating Inflammatory Bowel Diseases are able to “connect” with the hopelessness, vulnerability and depression which every IBD patient experiences at one time or another. But too many doctors still bully Crohn’s Disease and Ulcerative Colitis patients into making the best choice between bad to worse treatment options while they are either in pain, uncomfortable or emotionally compromised by their predicament.  I guess what I’m saying is the best doctors always try to see things from the patient’s perspective.  THAT is a great model to build upon for the physician and patient collaboration necessary to most effectively treat such a challenging and complex disease.  To that end, actor William Hurt demonstrates this brilliantly in this scene from the 1991 movie, “The Doctor” (pardon the Spanish subtitles):

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Discriminatory Hospital Patient Ebola Policies

Ebola Stigma in Hospitals

November 3, 2014, West Orange, New Jersey.   This morning I took my Mom for routine blood work at the substantial outpatient facility of a top local hospital chain.  Coincidentally, she had to undergo some scheduled diagnostic tests which prevented her from eating or drinking for several hours prior to the tests.  Since a prescription for this blood work had been sitting on a “To-Do” pile for a few months and it also required several hours of fasting beforehand, I figured we would try to get everything done this morning at this facility.

“Have you traveled to West Africa or had direct contact with an Ebola patient within the past 6 months?”

The attendants could not have been nicer and everything went smoothly other than having to be there at 7:45 AM.   After the two (2) ultrasounds were completed, we were assisted in getting to the laboratory area where I signed my Mom’s name on the check-in sheet and waited to be called.  Upon hearing my Mom’s name called out by the woman facilitating the insurance registration for the blood work, I walked over in my Mom’s stead since she is significantly visually impaired and was still rather uncomfortable from the aforementioned diagnostic tests. The female registration attendant could not have been more professional or kinder and after I provided my Mom’s insurance information she began asking me a series of questions related to #Ebola.  This very polite attendant asked me if my Mom had traveled to West Africa or had direct contact with an #Ebola patient during the past 6 months?  I thought the question reasonably reflected the current times and also demonstrated the hospital’s conscientious approach to patient and overall medical/facility  safety.

“Have you been HOSPITALIZED at a hospital which treated Ebola patients within the past 6 months?” 

But then she politely asked me if my Mom had been hospitalized at a hospital which had treated #Ebola patients within the past 6 months? Huh? I immediately took issue with this question and respectfully asked the attendant why such information is necessary?  Before she could answer, I added that I suffer from an #autoimmune disease (i.e., Crohn’s Disease) which often requires unpredictable long hospitalizations and I would not in any way hesitate, for example, to be admitted to a wonderful hospital like Emory University Hospital, which has recently successfully treated a few Ebola cases, so why is this New Jersey hospital fueling unnecessary fear in patients by asking such a question? Again, before she could answer, my passion got the best of me and I respectfully told her I found this question discriminatory against people like me who are chronically hospitalized because, other than the fallout from the supreme incompetence demonstrated by the Management Executives responsible for preparing to treat infectious diseases at the Dallas, Texas hospital which unexpectedly received the first Ebola patient, I trust ‪#‎healthcare workers and hospital management staffs to safely isolate the treatment of such patients, and even the associated healthcare workers, if they have direct contact with such infected patients.

In that regard, I trust that the isolation of any such Ebola patient, or a subsequent quarantine of the brave healthcare workers who treated such a patient, will be executed humanely, reasonably and in accordance with scientifically appropriate and current ‪#‎CDC #Ebola Guidelines so that patients admitted to a hospital for typical medical reasons are not treated by the same nurses, doctors and medical technicians until the #CDC Guidelines say it is safe to do so.

Slippery Slope of Stigmatizing Hospital Patient Ebola Policies

I made it clear to this attendant that my discriminatory allegation and passionate frustration were not aimed at her.  They are targeted at the hospital’s policy. She made a facial recognition that she understood and then told me she too has a chronic medical condition which often lands her in the hospital and she completely understands my point of contention with this Ebola hospitalization question.  I then reluctantly answered the question but felt an obligation to share my experience to highlight what I believe is the beginning of stigmatizing hospital patient #Ebola policies.  Having been educated as an attorney, I can’t think of a more “slippery slope” and I pray that hospitals become smarter than that and they contemplate the effects of enacting stigmatizing Ebola policies before implementing what are tantamount to local public health policies.  

Scientifically-sound CDC Ebola Guidelines are necessary to stave off the far worse effects of “Ebola Fear”

Given my abnormally high vulnerability to getting any infection in a hospital due to my ‪#‎autoimmune disease, it is my understanding the #CDC creates such isolating or #quarantine #Ebola guidelines so that any such #Ebola treating hospitals need not temporarily shut down or be ridiculously boycotted or wrongly stigmatized by prospective patients (or even by healthy healthcare workers) who become “scared off” simply from uneducated “Ebola Fear.”  (In the case of Emory University Hospital, these prospective patients should instead feel lucky to be the recipient of medical care from such incredibly dedicated ‪#‎Doctors,‪#‎Nurses and Technicians who might be treating them.)

Hypothetical: After being treated at Emory University Hospital for Crohn’s Disease, will THIS New Jersey Hospital now admit me when my Inflammatory Bowel Disease flares-up?

Let’s say I was recently hospitalized for my ‪#‎Crohns Disease at Emory University Hospital, the largest and most comprehensive health system in the State of Georgia.  I ultimately return to my home in New Jersey but a few weeks later I develop such a serious flare-up from my Inflammatory Bowel Disease that I need to be hospitalized immediately.  These same Ebola-related questions would be asked in the Emergency Room of this New Jersey Hospital prior to my admission.  Would my answer of “Yes” to this alleged discriminatory question compel this local New Jersey hospital not to admit me or to admit me with a stigmatizing “brand” that I was treated in the same VERY LARGE hospital in Georgia which had top-notch #healthcare professionals treating #Ebola patients?

Summary: The Slippery Slope of Hospital Patient Ebola Policies can be so stigmatizing that we could have a public health crisis simply based on “Ebola Fear”  

I don’t see ANY merit to asking this #Ebola question of a patient coincidentally hospitalized at a facility which was also treating an Ebola patient.  Further, it only fuels the public’s unfounded fears about the treatment and contagious nature of #Ebola. More relevant to my medical situation, I find this “hospitalization” question to be egregiously discriminatory to patients who are chronically hospitalized.  Just what was this New Jersey hospital going to do with this information? It is no more relevant than, and in my humble opinion, equally discriminatory as, asking me if I were recently hospitalized with a Gay or Lesbian roommate?  We are sliding down a cultural slippery slope and it must stop before a public health crisis is caused simply by “Ebola Fear.”  

 What do YOU think?

Ebola Virus v. Ebola Fear

Medical importance of taking an extensive “Patient History”

While this video was created from a recent interview with a top gastroenterologist to shed light of the Diagnosing Difficulties involved with Inflammatory Bowel Diseases (IBD) such as Crohn’s and Ulcerative Colitis, it is directly relevant to the current Ebola Outbreak because it reveals the diagnostic importance of taking a simple, but extensive, “Patient History.”

In a technological time of seemingly pin-point medical diagnostic testing, I found this doctor’s candid revelation and productive “Patient History” technique to be comforting since I will never forget the almost 2-year “diagnosis journey” I embarked on to finally be diagnosed with Crohn’s Disease in 1984 at the age of 21.  Most times during that ordeal I found myself “defending” my seemingly unrelated symptoms to smug, smart doctors who only felt comfortable correctly diagnosing me if my symptoms perfectly aligned with a medical textbook definition of a disease which provided them ample legal “cover.”  Luckily, I met this doctor at the end of that journey but had we encountered each other sooner, his very simple, but smart, “Patient History” approach would have revealed I had a severe case of a very serious autoimmune disease which has ultimately disabled me at the young age of 51.  I only hope new doctors embrace this more humane approach because I fear fancy technological diagnostic tests may not always be the best or most extensive approach – especially when tracing “Contacts” in an Ebola Virus situation.

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This is Video 5 of 8 from my September 15, 2014 interview w/ Dr. Mark L. Chapman of Mount Sinai Hospital in New York City and focuses on the too-often long, arduous and stressful “diagnosis journeys” patients must take before they are properly diagnosed and treated for Inflammatory Bowel Diseases (IBD) like Crohn’s or Ulcerative Colitis.  Dr. Chapman explains how he combats this decreasing occurrence by taking a compassionate and extensive Patient History, conducting a Physical Exam and carefully combing through all that was done previously in a patient’s case.  While technological diagnostic testing for IBD is now state-of-the-art, the most accurate diagnosis still may depend on a simple, but thorough, Patient History.  In that regard, Dr. Chapman shares his incredibly effective techniques for taking Patient Histories.  (Prior videos from that Interview, are also on this Professional Patient Perspective Blog.)

 For more Information:

Dr. Mark L. Chapman
Susan and Leonard Feinstein
Inflammatory Bowel Disease Clinical Center
Mt. Sinai Hospital
1 Gustave L. Levy Place, New York, NY 10029
(212) 861-2000
 
Michael A. Weiss
Founder, Crohn’s Disease Warrior Patrol
www.TheCDWP.org
@HospitalPatient
@CrohnsIBDPatrol

“Top-down” v “Bottom-up” Inflammatory Bowel Disease Treatments

This is Video 4 of 8 from my September 15, 2014 interview w/ Dr. Mark L. Chapman and focuses on the current contrasting styles of treating Inflammatory Bowel Diseases, i.e., “Top-down” v. “Bottom-up.”  Dr. Chapman also explains how he most effectively interacts with Crohn’s Disease and Ulcerative Colitis patients.

© 2014 CDWP  /  Copyright 2014  /  CDWP  All Rights Reserved

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The CCFA’s “Escape the Stall” IBD Campaign is INSULTING

CCFA escapethestall Oct 17 2014

Typical Crohn’s Disease Flare-up w/ PAINFUL Sacroiliitis & Mouth and Eye Sores

I couldn’t sleep last night because my body is still coming down from the massive amounts of steroids it took last week to quiet my recent bout with Crohn’s Disease, an incurable, chronic,  autoimmune Inflammatory Bowel Disease, which simultaneously triggered, what for me, is a typical non-bowel related effect of my 30 years of Crohn’s Disease flare-ups, namely, incredibly painful episodes of Sacroiliitis during which the uncontrollable inflammation infiltrates my Sacroiliac Joint in my lower back and any bodily movement causes me such severe pain that I yearn for Michael Jackson’s personal physician to prescribe his special sleeping medication so I could rest without constantly moaning and groaning.

For those of you unfamiliar with the sensation of a severe Crohn’s Disease flare-up which does not involve an intestinal obstruction, which, incidentally is probably the most pain a human being can tolerate without passing out from an inability to ride the tides of the increasingly intense cramping cycles which threaten to perforate your intestine, I can only describe it as feeling like sharp razor blades embedded in your small bowel which make you feel their every movement they’re cutting into the sides of your bowel each time you merely “digest” some sustainable liquid like Gatorade.  It’s startling when it first happens because you logically deduce that some major bodily organ is terribly failing you but you know as soon as you get to an Emergency Room, all will be fine.  That is, until you arrive and quickly learn that IBD is just as much a nightmare for doctors and nurses as it is for patients.  Even when the most compassionate and well-intentioned doctors and nurses try to proactively treat your IBD to avoid such severe and unpredictable episodes, the side effects from those long-range medications can actually cause MORE physical, emotional and financial devastation THAN THE Crohn’s Disease or Ulcerative Colitis itself.  Throw in the accompanying unpredictable autoimmune-induced Sacroiliitis and the nasty and painful mouth sores which can also sometimes occur in your eyes, and the journey in and out of a bathroom stall is the least of your worries.

But here comes the Crohn’s & Colitis Foundation of America (CCFA) to the rescue with an “Escape the Stall” TV Campaign with the lovely and talented Amy Brenneman

Yet tonight I saw a mainstream television commercial made by the usually WONDERFUL Crohn’s & Colitis Foundation of America (CCFA) about how Inflammatory Bowel Disease can happen to anyone “you know” so you should “Please help them ‘Escape the Stall.’”  I imagine some would say any attempt at raising awareness of the deleterious effects of IBD, Crohn’s Disease and Ulcerative Colitis is a positive step in the right direction toward being recognized as a major problem for many people which warrants support.  This is especially apparent when the commercial ends with the brave Ulcerative Colitis patent, survivor, actress, writer and producer, Amy Brenneman, lending her immense credibility to the cause.  But Ms. Brenneman’s classy contributions aside, that’s like saying “any promotion on national television is good promotion” and when competing against so many other worthy healthcare causes such short-sighted thinking defeats the underlying well-intended purpose of the “Escape the Stall” campaign.

“Escape the Stall” is an INSULT to those w/ Severe Crohn’s & Colitis & could set back our legitimacy as a worthy Cause for YEARS

I fear associating a credo like, “Escape the Stall” with Inflammatory Bowel Diseases such as Crohn’s Disease and Ulcerative Colitis simply plays to the lowest common denominator of people who unfairly stigmatize these often incredibly painful, debilitating, disabling, expensive, incurable and autoimmune diseases as nothing more than inconvenient and unpredictable bowel disorders whose primary effect is unwanted time spent in public bathrooms.  Accordingly, how are we to compete for Supportive and Research Donations with worthy causes for so many other Rare Diseases and the different Cancers when arguably the most important organization in the history of Inflammatory Bowel Disease seemingly trivializes the often horrifically devastating effects of Crohn’s and Ulcerative Colitis?

The often Harsh Realities of Inflammatory Bowel Disease

Most people around the world do not have ANY IDEA about the lonely and painful plight of the IBD patient who routinely gets denied Social Security Disability Benefits in the US despite being deemed systemically ravaged and disabled by the most qualified of doctors after years of battling IBD or those suffering from incurable side effects of the Biologics they had to take just to stop the bowel surgeries and repeated hospitalizations or those who must see Pain Management Physicians month-in, month-out, just to “survive” while even some of their own family members start doubting the disabling effects of the “Invisible Illness” they fight because their spirit gets broken from having to cope with a disease the severity of which, so few truly understand.  With all that on the line, how the CCFA could chose an Awareness Television Campaign with a GREAT spokesperson like Amy Brenneman based on such superficial aspects of the disease is counter-intuitive and an INSULT to the patients with Severe Crohn’s Disease and Ulcerative Colitis who need the support and research advancements NOW.

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Treating Pediatric Crohn’s & Ulcerative Colitis Patients

This is Video 3 of 8 from my September 15, 2014 interview w/ Dr. Mark L. Chapman and focuses on the definition of Diverticulosis and how if differs from Inflammatory Bowel Disease (IBD) and then Dr. Chapman explains the nuances involved with treating Pediatric Crohn’s Disease & Ulcerative Colitis. Coming soon: Video 4 of 8 in which Dr. Chapman explains the different IBD treatment theories of “Bottom-up” v. “Top-down.” 

By way of brief background, I recently had the opportunity to interview a legitimate world-class physician, Dr. Mark L. Chapman of Mt. Sinai Hospital in New York City, about the chronic, incurable, autoimmune disease from which I have severely suffered for over thirty (30) years. But Inflammatory Bowel Disease (“IBD”) affects MILLIONS around the world, of all ages and ethnicities, and tends to “personalize,” or customize, its symptoms and severity leaving some with “just” an expensive chronic disease and others with a living nightmare in which the treatments are as pervasively devastating as the disease.

In association with a charitable organization I founded, namely, the “Crohn’s Disease Warrior Patrol” [“CDWP“], I’ve created eight (8) short videos from my ninety (90) minute September 15, 2014 interview with Dr. Chapman to help raise global awareness about the potential severe, disabling and devastating physical, emotional, psychological, professional, social, financial and familial effects Inflammatory Bowel Disease can wreak on one’s life.

Please SIGN-UP to be a Crohn’s Disease Warrior HERE at the website – it’s free.  To ensure seeing the continuation of such useful video information about Inflammatory Bowel Diseases such as Crohn’s Disease and Ulcerative Colitis, PLEASE DONATE to the CDWP HERE at the website.  Thank you.

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© 2014 CDWP

Copyright 2014 CDWP – All Rights Reserved

CDC’s ignorance of VITAL Role of Nurses & Ebola Dallas Debacle

 #Nurses r heart of #Healthcare

No mention of “Nurses” turned Ebola “worries” to Ebola “concerns” to Ebola FEAR

After each Ebola and Texas Health Presbyterian Hospital (“Dallas Hospital”)-related Press Conference held last week, I began to worry about the subtle, but vitally important, omission of the term “nurse” or “nursing” whenever authoritative proclamations were made by the Centers for Disease Control (“CDC”), various Texas and Dallas politicians or by President Barack Obama’s staff about the United States’ readiness and ability to effectively treat, isolate and contain the Ebola virus disease.  My worries were transformed into “concerns” when various BRAVE nurses and representatives of nursing organizations admitted they lacked, and respectfully yearned for, the necessary training and protocols to properly and safely confront all possible Ebola situations.  My concerns were further heightened later last week when Ebola patient Thomas Eric Duncan succumbed to the often fatal virus while in isolation at the Dallas Hospital.  My heightened concerns have now been transformed into REAL FEAR since it was most recently reported that TWO (2) nurses who treated Mr. Duncan at the Dallas Hospital tested positive for having the Ebola virus despite taking the basic safety precautions; all of which must have been at least seemingly adequate since no one commented UNTIL YESTERDAY MORNING about a potential “breach in protocol.”

Two (2) Nurses may pay the ultimate price for a MASSIVE Bureaucratic & Institutional  FAILURE

The Director of the CDC, Dr. Thomas Frieden, initially and despicably reacted to the first nurse contracting Ebola as the result of her apparent “breach in protocol” thus blaming her for contracting Ebola.  He should be FIRED simply for making such a foolish, inaccurate, self-serving and insensitive comment at a time when people around the world are watching and relying upon his every word to quell their fears about contracting Ebola. He quickly corrected himself and issued some vague comment conveying appreciation for this nurse’s brave commitment to her patient and insinuated that any “breach in protocol” was a combination of errors committed by the institutional participants such as the Dallas Hospital and the CDC.  But casually referring to possible CDC errors with respect to a life and death matter such as Ebola safeguards is condescending at best and completely incompetent at worst.  Dr. Frieden should be fired for making this ridiculous comment.  Then, today, we learned that another nurse who treated Mr. Duncan has also contracted Ebola and it turns out the aforementioned CDC and/or Dallas Hospital “protocols” were either incorrect, confusing, inconsistent, ignored by the Dallas Hospital or non-existent and these HEROIC NURSES nevertheless decided to utilize their expertise to help another human being suffering a horrific medical fate.  Dr. Frieden should also be fired for failing to devise and communicate clear and consistent Ebola treatment and containment protocols.

Shockingly, the unpreparedness of the Dallas Hospital to treat and contain an Ebola patient put its own workers and patients at risk for contracting Ebola

Considering all these authoritative press conferences which NEVER ONCE MENTIONED the VITAL ROLE OF NURSES in treating patients with ANY INFECTIOUS DISEASE, it was the Nurses who proved to be the most knowledgeable and forthcoming authority on Ebola treatment and containment when their representatives admitted they were unsure of which protocol to follow.  Yet their pleas for help and guidance were IGNORED until one of them contracted Ebola. Moreover, these HEROIC NURSES didn’t wait for the Bureaucrats to devise a universally safe Ebola protocol; they just “ran to the fire” to help Mr. Duncan and now two (2) nurses may pay the ultimate price for a MASSIVE BUREAUCRATIC FAILURE. But MOST STARTLING is how unprepared the Dallas Hospital was to admit an Ebola patient and effectively treat him or her while also protecting its healthcare professionals and patients.  If the Dallas Hospital only followed the candid, transparent and forthcoming lead of organized nursing groups and admitted they needed guidance about the proper protocols, Mr. Duncan would have been transferred to a different facility better trained to handle an Ebola patient without compromising the health of its workers or patients.

Crucial Role of Nurses should have been acknowledged by the CDC

The CRUCIAL role of nurses in treating patients in a hospital setting should have been duly acknowledged the minute the CDC and/or state and federal health officials devised training programs and protocols for healthcare professionals treating Ebola patients and NOT after a heroic nurse tests positive for the Ebola virus.  I find it reprehensible for the Director of the CDC to react to such devastating news by immediately seeking to apparently blame the nurse for this Ebola occurrence by stating, “a breach in protocol for treating a patient happened,” especially when that nurse had little guidance as to ANY Ebola treatment or containment protocols yet she never wavered in her professional resolve and tried to help a fellow human being who was medically suffering inside a hospital.  That’s a HERO who should be singled out for responding to an unprecedented medical emergency by offering all the knowledge, training and experience she has accrued to try and save a stranger’s life regardless of the consequences.  The “protocol” to question is the one devised by the CDC and/or by federal/state health officials who completely dropped the ball in failing to recognize “the nurse” as the “heart” of any public healthcare system such that Ebola or other potentially fatal infectious disease training protocols, for example, should be communicated to nurses as soon as they  are developed.

Nurses stand with Patients on the Front-lines

Doctors may give “orders” but nurses “execute” them.  This places nurses in direct contact with patients for the longest periods of time making it logical for nurses to perhaps be trained with a greater sense of urgency than that utilized with most any other healthcare professionals with the possible exception of hospital administrators and “First Responders,” a catch-all term referring to the first medically trained responders to arrive on the “scene,” which leaves them extremely vulnerable to every conceivable infectious disease. First Responders typically include the police, fire department and emergency medical technicians (EMTs) such as paramedics, ambulance drivers and various emergency room personnel.

With all due respect to the bright, compassionate and dedicated doctors, I’m tired of watching various Bureaucrats opine on television about the current Ebola situation and how “we” have the “best Doctors ….”  We do; but it is the Nurse who stands in the front-lines of any battle vs. potentially fatal infectious diseases and it’s therefore appalling they are not mentioned FIRST in any discussion regarding reasonable concerns about Ebola & the readiness to contain it from spreading when they are the BRAVE Healthcare Professionals MOST AT RISK because of their unflinching dedication to HELPING OTHERS.  After all, in a typical day at a hospital, the patient sees the doctor for four (4) – eight (8) MINUTES but it is the nurse who’s treating the patient during the “remaining” twenty-three (23) HOURS and fifty-five (55) minutes.

The Ebola Candor & Transparency demonstrated by Nurses MUST transform the CDC

I think we will all learn a great deal from the current Ebola tragedies but people will die needlessly if CANDOR and TRANSPARENCY is not practiced going forward.  To that end, the CDC and state/federal health officials should follow the lead of Nurses and admit they are not NOW fully prepared to address these potential global disasters BUT they are prioritizing their training efforts and anticipate being ready soon.  After all, the first step in fixing a problem is admitting you have one.  In that regard, the CDC not recognizing Nurses as the heart of healthcare reveals something’s seriously wrong at the CDC because their Ebola treatment/containment protocols and training should be initially focused on nurses and first responders.

This is another reason Dr. Thomas Frieden should be fired so that a NEW climate can be established at the CDC which duly recognizes Nursing as perhaps the most at-risk of healthcare professionals when it comes to treating and containing infectious diseases.  Clearly, CDC Director Dr. Frieden either does not believe this to be true or he is incapable of incorporating Nurses into a CDC infectious disease training protocol in a manner commensurate with their high degree of exposure to contracting any such infectious diseases from the patients they treat.  However, I trust the current Ebola debacle at the Dallas Hospital will be carefully studied and the CDC will then quickly rectify this so that nurses around the world will be properly trained to treat and contain any type of Ebola case at their respective hospital.

But what do I know?

I share this information not to boast but to legitimize my opinion in what I believe is a global emergency which presently is “only” a health threat but if it is not properly contained it can quickly morph into a global economic threat and it can affect the surety with which a chronic patient relies on a hospital and a healthcare system. To that end, I’ve been hospitalized over TWO HUNDRED (200) times and endured over TWENTY-FIVE (25) surgeries due to my thirty (30) year battle with the chronic, incurable, autoimmune illness, Crohn’s Disease.  I also wrote a critically-acclaimed book on this subject matter, namely, “Confessions of a Professional Hospital Patient,” which continues to sell as both a paperback and eBook at major retailers and etailers such as Amazon.com and Barnes and Noble.comTherefore, please trust me; nurses are the heart of healthcare.  I also wish God’s speed to the two (2) nurses currently battling the Ebola virus and I pray no other healthcare professional or patient from that Dallas Hospital suffers a similar fate.   

How the CDC's ignorance of the Critical Role of Nurses in Patient Care helped worsen the Ebola Dallas Debacle

How the CDC’s ignorance of the Critical Role of Nurses in Patient Care helped worsen the Ebola Dallas Debacle