Effective September 15, 2015 I am on Hiatus

Thank you for reading my Blog. I must take a hiatus due to health reasons but I will be back. In the meantime, please check out my Twitter Account @HospitalPatient or my book, "Confessions of a Professional Hospital Patient."

Thank you for reading my Blog. I must take a hiatus due to health reasons but I will be back. In the meantime, please check out my Twitter account @HospitalPatient or my book, “Confessions of a Professional Hospital Patient.”

Dear Loyal Readers:

I hope this Blog Entry finds you well.  I apologize in advance, but I must be brief. Due to a complicated medical problem involving a Bone Spur in my Neck which is causing a variety of painful symptoms, I must take a break from typing for a while.  If I require surgery, I might have to take a little more time off.

I will certainly share the most interesting parts of my medical  “journey” as soon as I can. In the meantime, I have been tweeting @HospitalPatient because it’s only 140 characters and I can dictate it.  There’s something about the typing position which aggravates my current Neck situation and causes SEVERE PAIN down both arms and at the tip of BOTH shoulders.  My Pain Management Doctor believes I have 2 separate problems: 1. A Bone Spur in my Neck compressing nerves in 2 different cervical discs on different sides of my Neck and 2. Severely Inflamed “AC Joints” in BOTH SHOULDERS causing the “shoulder separation feeling” pain.

Given the “coincidence” of both shoulders having this “AC Joint” problem at the same time, it seems this problem likely is the result of my December, 2014 fall off a 10-foot ladder.  I fell backwards while standing on the top of the ladder trying to get something from a shelf in my garage.  I lost my balance and landed on the upper portion of my back.  As I was falling, I swear I thought I was going to be paralyzed.  That’s how high the fall was but I only fractured a bone in my back.  I am truly LUCKY and THANKFUL. Well, it seems I also damaged my Neck.   (But I still consider myself lucky and thankful because it could have been a lot worse.)  I don’t understand why it has taken so long to cause all this pain but such unique manifestations of injuries or symptoms have been the story of my life ever since I was diagnosed with Crohn’s Disease 30 years ago.

I am also the primary Caretaker for my Mom and that has become much more intense.  Accordingly, I must take care of my health and my Mom and take a break.  Thank you for reading my Blog and for posting comments, good or bad.   If you are interested in reading more of my healthcare writing, my book “Confessions of a Professional Hospital Patient” is still available in all media formats at Amazon and Barnes and Noble.  I have been told it is very funny and very informative.

Please leave your comment here, good or bad.  I only ask that it be constructive.  Thank you.

Please leave your comment here, good or bad. I only ask that it be constructive. Thank you.





Manipulation of Patients via FDA-approved Drug Commercials

The FDA recently made drug company Duchesnay, USA remove this Celebrity Endorsement by Kim Kardashian from her Instagram account for its morning sickness drug Diclegis because it did not list all the possible side effects and thus was "misleading."

The FDA recently made drug company Duchesnay, USA remove this Celebrity Endorsement by Kim Kardashian from her Instagram account for its morning sickness drug Diclegis because it did not list all the possible side effects and thus was “misleading.”

A Drug Commercial Parody exposes an FDA policy as antiquated

“Saturday Night Live” Season 33, Episode 5, February 23, 2008 – “Annuale”

      A 2-minute “Saturday Night Live” (SNL) parody commercial for the fictitious drug, Annuale, hysterically captures the absurdity of the U.S Food and Drug Administration’s (FDA’s) archaic rules regarding the advertisement or endorsement of prescription or over-the-counter pharmaceutical drugs. PLEASE do yourself a favor and click-thru to watch this BRILLANT video which demonstrates in ways I cannot adequately explain with mere words just how far out-of-touch the FDA has become with the way in which our lifestyles are affected by the advertisement of drugs on television or via social media.  In short, this video initially aired during SNL Season 33, Episode 5 on February 23, 2008.  It features 4 women (Tina Fey, Amy Poehler, Casey Wilson and Kristen Wig) fed up with everything having to do with their monthly Menstruation Periods until they discover “Annuale,” a birth control pill which limits females to having a single or “Annual” Menstruation Period.  The “catch” and hilarious “twist” in this drug commercial parody is that this “annual” Menstruation “convenience” comes with a few dangerous side effects such as violent rage, the development of a second vagina and the growth of a leathery tail. The complete voice-over side effect and/or health risk disclaimers are as follows:

“Annuale’s not for everyone. (as the [disclaimer] text scrolls over color footage of the four women screaming [and acting out the various dangerous and bizarre behaviors triggered by taking this fictitious drug]) Do not take if you are using MAIO Inhibitors or if your occupation requires you to operate heavy machinery. Do not take Annuale if you ever plan to become pregnant, as it may turn your baby into a firemonster. In the days around your period, you may develop a leathery tail. Annuale may cause you to develop a second vagina. Notify authorities in your town when your period is imminent as they may want to incarcerate you pre-emptively like a wolfman.”


People are Smarter than Advertisers

think they are 

      Poking fun at something or someone often reveals truths about it or them, which are difficult to put into words.  For example, even when the “threatened” drug side effects and health risk disclaimers are so extreme and vividly demonstrated in a drug commercial, as they are in this SNL parody drug commercial, people still focus on the possible improvement in their lifestyle from the drug without reasonably contemplating any possible deleterious side effects or health risks.  That’s one of the two (2) major points I took away from the SNL parody.  Therefore, a reasonable argument could be made that the accuracy of the drug’s efficacy should be the FDA’s emphasis instead of its close monitoring of the manufacturer requiring the advertiser to include every possible side effect or health risk disclaimer, most of which are created by attorneys who wear belts, suspenders and look in the mirror every 5 minutes to make sure they are still wearing their pants!  Additionally, people inherently understand there is “no free lunch” in all aspects of life and that includes some type of undesired side effect or health risk from a drug which addresses and resolves their specific medical problem.  To that end, people in this “Google” era who often watch television, do so on two (2) screens, with the smaller one at the ready for quick internet research, and are thus very resourceful such that they know to research for a drug’s possible side effects and/or health risks.  And they don’t want their social media platform’s 140-characters to be dominated by unnecessary disclaimers written more to protect drug manufacturer’s from frivolous lawsuits than to inform them of a drug’s dangerous side effects or health risks in the interests of public safety.

The FDA is stuck on “Form” over “Substance”; People need only Substance

      Finally, I think it is fair to say that people tend to ignore verbal or written “scrolled-down” disclaimers which stereo-typically appear toward the end of visual drug commercials and reveal every conceivable side effect and health risk of the drug in favor of continued watching of their visualization of a possible enhanced lifestyle achieved with this drug.  This is where the second of the two (2) takeaway points of this SNL drug commercial parody comes into play.  We now live in a world of “substance” in which people can easily navigate to sources of information of their choice and anything “published” as mandated by “form” is not only antiquated, superfluous and unnecessary but any information included in a drug commercial for “form” reasons, such as verbal or written scrolled-down disclaimers, is most likely going to be ignored by viewers.

      More importantly, given that the FDA presently still places great emphasis on “form” in policing its regimented and outdated rules regarding drug TV commercials, people are either being denied access to commercials which would interest them if only the manufacturer could afford producing a commercial sophisticated enough to include all of the “belt and suspenders” disclaimers required by the FDA or people are being inundated by commercials touting the same drugs from the same manufacturers who happen to be in an advantageous financial position that they can comply with the rigorous but unnecessary drug commercial requirements mandated by the FDA.

The FDA vs. Kim Kardashian & her morning sickness

      As recently as early August, 2015, the FDA again revealed its antiquated focus on “form” over “substance” with respect to the advertisement and/or endorsement of prescription or over-the-counter pharmaceutical drugs when it singled out Reality Television Star/Brand and Businesswoman Extraordinaire Kim Kardashian for her paid promotion of the morning sickness drug, Diclegis, via her popular Instagram social media account.  More specifically, the FDA actually sent a “Warning Letter” to the drug’s manufacturer, Duchesnay, after Ms. Kardashian’s social media endorsement of the drug for her own morning sickness and simply concluded Ms. Kardashian’s statements didn’t say enough about the drug’s potential side-effects and are thus misleading.  In responding to the FDA, Duchesnay respectfully insisted that these side effects are easily obtainable online through numerous websites and that Ms. Kardashian had found the drug through her own doctor to treat her own morning sickness before being approached for this endorsement deal.  But Ms. Kardashian subsequently deleted the Instagram post and in order to comply with the Warning Letter, the drug manufacturer must “correct” Ms. Kardashian’s “misleading” statement to that same Instagram audience.  It is unclear if the drug company intends to comply with this FDA Warning Letter requirement or how they intend to do so, were they to comply.

      If Ms. Kardashian had actually used the morning sickness drug, Diclegis, and presented her own opinion of the drug on her Instagram social media account without being paid or “coached” by the drug’s manufacturer, then the 1st Amendment would have protected her against any repercussions and her actions would not have fallen under the purview of any federal agency.  Similarly, since the drug company would then have no knowledge of Ms. Kardashian’s Instagram post until it was posted by her, the drug company also would face no repercussions.  But once she was paid to make such statements, the drug’s manufacturer has to make sure the information is accurate and the “advertisement” is in compliance with all pertinent FDA rules.  But in the world of social media and ever-evolving mediums, some of which only permit 140-characters, it is unrealistic to list each and every disclaimer, many of which are only listed to protect the rear end of the manufacturer from over-reaching law suits filed by disgruntled customers unhappy with the results or somehow damaged by the drug through no foreseeable liability of the drug company.  Accordingly, some disclaimers are appropriate in terms of warning the general public about reasonably dangerous realistic side effects of the drug but too many disclaimers are created by attorneys donning both belt and suspenders while protecting only the manufacturer.

The Manipulative FDA-approved Drug Commercial – “Humira”

      An example of a drug apparently properly advertised on television in accordance with FDA rules, is “Adalimumab,” better known by its brand name of “Humira.”   In full disclosure, you should know that I’ve taken this drug for treatment of my Severe Crohn’s Disease.  While the drug worked very well and exactly as advertised for a significant period of time (i.e., approximately 3-4 years), I eventually started coming down with unusually severe respiratory conditions which landed me in the hospital.  I started doing some “Google” research on the drug and I discovered that not only were serious (and possibly fatal) respiratory infections a fairly frequent occurrence among some other Humira users but the FDA issued several “Black Box Warnings” to the manufacturer of Humira, Abbott Laboratories, AFTER it was released to the general public. “Black Box Warnings” are essentially drug packaging requirements the FDA requires a pharmaceutical company to include as a bold warning on the packaging and on the patient instruction sheet of a drug if serious or life-threatening risks are associated with the drug.  They are the FDA’s most severe warnings a drug can carry before it is pulled from the shelves.

            Not only were there Black Box Warnings issued to Abbott Laboratories for the possibility of dangerous fungal respiratory conditions such as “histoplasmosis” but there were also Black Box Warnings issued to Abbott for increased risk of cancers in children and for the development of Legionella and Listeria (the Humira drug is now owned and operated by a “spin-off” company of Abbott called “AbbVie”).  There were also written communications to the general public about the serious risks of Humira and the development of the rare T-cell lymphoma, HSTCL.   At that time, a summary of all Warnings of concern to patients taking Humira was also included in a RARE “YouTube” announcement by two (2) prominent executives at the FDA.  This is no longer available on the Web but I have seen it.  I imagine the rationale behind using such a unique and new medium is that autoimmune diseases such as Crohn’s Disease typically affect people in the age range consistent with that of the YouTube user’s age demographic.  Interestingly, when I went to AbbVie’s website in preparation for writing this Post and typed “Black Box Warnings” into the Search Box, it came back with NO RESULTS.  Yet, a doctor was able to devise a very specific time-line for the several Humira-issued Black Box Warnings.  While somewhat difficult to cut through the medical jargon, the FDA’s website supposedly has a list of each Warning it has issued but in my cursory review I was only able to locate two (2) such FDA notices.  But upon closer scrutiny or written request, I am confident each FDA issued Black Box Warning can be obtained.

         The television commercial currently running regarding Humira seemingly within every dinnertime Network News Program and during every major sporting event is embedded below.

      It is approximately 1 minute and 14 seconds in length and the VERBAL side effect and health issue disclaimers begin to run at the 35 second mark and end at the 1 minute and 6 second mark.  Thus, the efficacy of Humira is on screen for approximately 43 seconds while the disclaimers are VERBALLY spoken for approximately 31 seconds.  The potential problem with this apportionment of time is that with this particular drug, especially considering how serious the potential side effects and/or health issues can be, it would seem that the 43/31 Visual to Verbal disclaimer content should be flipped.  Moreover, to more accurately represent the seriousness of the potential side effects, wouldn’t it seem to be a fairer representation of the Humira “experience” if the 31 seconds devoted to the side effect and health issue disclaimers included some VISUAL content equal in font prominence and size as the “Remission is Possible” selling-point?

      Moreover, if the FDA is true to its word about prohibiting “misleading” commercials or endorsements like that of Kim Kardashian’s above, which merely didn’t mention side effects or health issues when EVERYONE knows that EVERY DRUG comes with the potential for SOMETHING, the 31 seconds of Humira side effect and health issue disclaimers should SHOW a Humira patient FREAKED OUT because he or she has just been told they have a potentially lethal fungal lung infection, or they have a strange cancer for their age or lifestyle or that they must begin chemotherapy to treat a severe respiratory condition side effect of Humira, AS I WAS REQUIRED TO DO IN ORDER TO BE ABLE TO BREATHE & TALK AT THE SAME TIME.  After all, the beginning of the commercial SHOWS the viewer a “patient” struggling with the effects of Crohn’s Disease so why can’t the commercial do the same regarding a patient struggling with the potentially serious side effects of the drug being marketed?  The answer is because the opening shots of the woman struggling with Crohn’s Disease lures in similar patients and thus creates a demand for the drug, Humira.  Any visualization of LETHAL or LIFE-ALTERING Humira side effects would NOT HELP SALES. Accordingly, I respectfully contend that the Humira commercial, through no fault of Abbott or AbbVie since they are simply following FDA rules, is MISLEADING.

Conclusion: FDA Rules re: Drug Commercials permit Drug Companies to Legally Manipulate Patients

      The Humira television commercial is in sync with the FDA’s preposterous rules regarding the “form” of drug television commercials and the FDA doesn’t care about the “substance” of these commercials, for if it did, the Humira commercial would show a patient struggling with the side effects of Humira for the same amount of time the commercial portrays the patient struggling with Crohn’s Disease (and thus setting the stage for the miraculous selling points of Humira).  Furthermore, if the FDA truly played its role of being **responsible for protecting the public health by assuring the safety, efficacy and security of human …. Drugs …,” the 31 seconds of VERBAL disclaimers would have more substance to them so that the viewer can’t simply tune them out and focus on what they’ve already seen as the potential for them if they took Humira.  Unfortunately, the result is that many Crohn’s Disease patients then go to see their doctors and request to be put on Humira.  Some patients struggling so badly with Severe Crohn’s Disease who don’t respond to any other treatments are certainly candidates for Humira.  But Crohn’s Disease patients who have cases which are not Severe and which have yet to prove they won’t respond to other treatments are not yet candidates for Humira.  This could create a SERIOUS PROBLEM if their doctors cave into the patient pressure and Humira then becomes a drug of 1st resort when it should be a drug of last resort (with the exception of some pediatric Crohn’s Disease and Ulcerative Colitis cases).

      I don’t blame Abbott or AbbVie for what happens in gastroenterologists’ offices because they are simply taking advantage of the FDA’s rules and doing all they can within the law to market their product.  My problem is with the FDA and their archaic rules regarding drug media commercials which CLEARLY favor FORM over SUBSTANCE.  The FDA thinks it is protecting patients by making sure EVERY conceivable disclaimer is included in a commercial but in practice they should recognize how companies like Abbott and AbbVie legally manipulate these rules and create a potentially DANGEROUS situation for patients whom only care about what they SEE and not what they HEAR.  In that regard, I BEG THE FDA TO REVISE THESE RULES so that patients can no longer be legally manipulated by drug companies.

**From FDA Website

Please leave a comment if you have any thoughts about the FDA's drug commercial policy and/or the actions it took in the recent case involving Kim Kardashian's seemingly well-intended Instagram Endorsement of the morning sickness drug, Diclegis.  Please also feel free to comment about the very funny parody drug commercial by Saturday Night Live for the fictitious drug, Annuale.

Please leave a comment if you have any thoughts about the FDA’s drug commercial policy and/or the actions it took in the recent case involving Kim Kardashian’s seemingly well-intended Instagram Endorsement of the morning sickness drug, Diclegis. Please also feel free to comment about the very funny parody drug commercial by Saturday Night Live for the fictitious drug, Annuale.

Patient Centricity Pioneers

The group of 12 "patient leaders" brought together by a global healthcare company in July, 2015 at a beautiful rustic setting outside of Washington, DC  to contribute our respective experiences toward the establishment of a working definition of a "Patient Centricity" healthcare standard.

The group of 12 “patient leaders” brought together by a global healthcare company in July, 2015 at a beautiful rustic setting outside of Washington, DC to contribute our respective experiences toward the establishment of a working definition of a “Patient Centricity” healthcare standard.

      This title of this picture is misleading because it only depicts the twelve (12) patients, patient advocates, activists, caretakers, health care professionals, rare disease advocates, health advocates and community leaders (collectively, “patient leaders”) who recently took part in a ground-breaking meeting just outside of Washington, DC organized by a large, global healthcare organization aimed at defining “Patient Centricity” for the purposes of utilizing it as a future new standard by which patient care is delivered, patient products and services are designed and patient concerns are listened to, and acted upon, in creating and implementing their business objectives.

      The reality is that these twelve (12) people, of which I am one (1), represent many more around the world who are also “Pioneers” of “Patient Centricity,” three (3) of whom, for example, I can personally attest have been working at this for several years by transforming patients into legitimate “stakeholders” at their respective world-wide renowned Healthcare Conferences and Events.  More specifically, Denise Silber via “Doctors 2.0 & You” held annually in Paris, France (which now has a year-long presence in social media), Dr. Larry Chu via “Stanford Medicine X” held at various times during the year at Stanford University (which also has a year-long presence in social media) and Regina Holliday, an artist healthcare activist who began to include patients and their stories in The Walking Gallery of Healthcare and most recently at her Conference, #Cinderblocks2: The Partnership with Patients.

What is “Patient Centricity?”

      Up until now, “Patient Centricity” has been considered by many health organizations to consist simply of designing a healthcare service or solution around the patient.  Thus, when hospitals or medical practices advertise themselves as being “patient-centric,” they are trying to convey that they “stand out” because without exception their doctors, nurses and surgeons actually listen to patients and meaningfully consider their concerns and preferences before doing what they think is right to attain the best or desired patient outcome.  But I’ve always found that “message” to be somewhat disingenuous because all along that’s what I thought was occurring whenever I went to consult with a well-respected health care professional and thus I’ve wondered why it is suddenly being emphasized?  This begs the question, what was their organizational policy before it was “patient-centric?”

      Perhaps prior to the above-pictured innovative recent think-tank of patient leaders, I was a bit cynical in this regard because I have been hospitalized for Severe Crohn’s Disease at some of the world’s most prestigious institutions, each of which also boasted a “patient-centric” atmosphere.  But my experience at the most prominent one was anything but that as it was exclusively reliant on the whims of the doctor or surgeon who was treating me there.  This does not make that institution less world-renown but in my case it made two (2) particular health care professionals disgraceful human beings who cared more about their “statistics” and internal institutional healthcare analytics than they did about my personalized post-operative reaction or my repeated complaints of inadequate pain relief.  In that case, “Patient Centricity” was discarded for “Don’t listen to the Patient, I know what is best for him Centricity.”  They made me feel like I was ostracized from one of the world’s greatest hospitals all because there were complications with my surgery, which, incidentally, was my 20th or 21st abdominal surgery, so wouldn’t you think complications would surely be expected? [Rhetorical]

      Thankfully because of the relentless advocacy of the people like the 12 pictured above, their brethren in Europe whom are also a part of this particular innovative Patient Centricity initiative (see below) and through the on-going work of patient-centric leaders like Denise Silber, Dr. Larry Chu and Regina Holliday, the definition of “Patient Centricity” has become more meaningful to healthcare organizations because it may well soon become one of the most important standards in measuring the quality of both patient care and of the “patient experience” and thus substantially determine a facility’s or company’s ability to attract patients and valuable industry accreditations.  As a result, a comprehensive and universal definition of “Patient Centricity” is sorely needed and it is for this reason the 12 of us were selected to brainstorm with one another in a lovely historically preserved “Country House” just outside of Washington, DC in late July, 2015.

Why was this meeting different & thus more productive?

      Whenever every Healthcare Management Consultant makes a presentation, the following phrase is either included on a PowerPoint slide or it is uttered as part of their slick shtick:  Patients are at the core of tomorrow’s health system.  From an experienced patient perspective, that’s like saying whomever wins the 2016 United States Presidential election will have a significant impact on the world, Donald Trump is not a “thoughtful politician” or Showtime’s “Ray Donovan” character is a bad-ass.  Each of these statements evoke the same “no-brainer” revelation in the listener and require zero risk in the speaker going out on such a strong limb.  Therefore, proclaiming patients as being vital to tomorrow’s health system is both an obvious and safe prediction to make and rely upon.

      By comparison, this July, 2015 Washington, DC gathering of what this large, global healthcare organization considered the top United States “patient leaders” was unique because they bypassed the Management Consultancy-speak and went directly to the source for answers to questions which they hoped would form a working definition of “Patient Centricity.” They honestly did not know what the final result would be or if this corporate initiative would even be productive.  Witnessing it as a former attorney, it was like watching a litigator ask his own witness questions to which the attorney did not know the answers, a cardinal sin for a litigator looking to WIN.  But this global healthcare company wasn’t looking to “WIN;” rather, they were looking to LEARN.  Accordingly, they put faith in experienced patient leaders, took away all safety nets and in the process revealed their genuine interest in learning from patients what this soon-to-be very important touchstone term should mean.

      The name of the healthcare company which funded this Patient Centricity initiative is irrelevant since this is an experimental program and until these meetings create tangible programs, I think what is of paramount importance is that these meetings are actually taking place and trusted input is being sought of 10-12 patient leaders in the United States and 10-12 patient leaders in Europe.  I imagine, and hope, there will be many more meetings to apply the standard of Patient Centricity to this healthcare company’s present and future products and services but the basic “agenda” for this first meeting was simple: Create a definition of “Patient Centricity.”  Instead of taking suggestions from this group of erudite patients, caretakers, advocates and healthcare professionals, after casually getting to know one another at a pleasant informal dinner, the next morning we were separated into two (2) groups of 5 or 6 and then were asked to converse and list the attributes which described our best and worst experiences interacting with our respective health care systems.

      I had been through an exercise like this before so I knew what to expect in terms of the “process” and how the positive attributes were going to be used to ultimately craft a definition of “Patient Centricity,” then it would be compared to the results of the other group so that the entire group could then take the best from both groups to finalize a working definition of “Patient Centricity.”  While I have witnessed this type of approach attempted before, I have never seen it executed this flawlessly as the intent and genuine interests of the 12 patient leaders were perfectly aligned with the objectives of this progressive global healthcare company.  I was also amazed at how much I learned by listening to the stories of the other patient leaders as some found the best and most important attributes of their doctor-patient or hospital “transactions” to be outcome-oriented, compassion, explanation of treatment options, selection of words by the healthcare professionals, providing on-going education about their disease, inclusion of the patient’s spouse or family in decision-making, respect, follow-up care, utilization of plain English on medication labels, etc.

      Some patient leaders emphasized the importance of making patients equal “stakeholders” in the process while others wanted to include access and affordability to medication as part of the definition, particularly from the perspective of the Payors and the Pharmaceutical companies.  I tried to figure out if preferred positive attributes were somehow tied to particular diseases but each patient leader seemed to have such diverse experiences that their respective inputs transformed any predicable attributes logically associated with their diseases.  I also realized that several of the suggested attributes were more aspirational than realistic but I learned from my 11 other colleagues that inclusion of such expectations is important at this critical definition formation stage.  Most importantly, by the end of the meeting, my skepticism coming into the meeting about the significance of the establishment of a Patient Centricity standard was gone and I now look back at my “Don’t listen to the Patient, I know what is best for him Centricity” story and can laugh when prior to this meeting it’s never been a memory I wished to recall.

What is the definition of “Patient Centricity”?

       The actual wording of the definition we came up with as a group is not for me to disclose on my Blog since it is technically the property of the company who brought us all together.  Suffice it to say, once a comprehensive Patient Centricity standard is adopted by all Institutions, Providers, Participants and Payors of healthcare then patients with complex diseases or complex forms of diseases (like me) needn’t ever worry about having their seemingly abnormal concerns discarded simply because they deviate from the norm or they prove to be a much more difficult patient than the “textbook” case.   But I think you can gather from this Blog Post that I was incredibly impressed with each of the 11 other patient leaders and how, in their own ways, they fit their ideas into the conversation to ensure they counted.  There was also a great deal of mutual respect in each group so as much as we all had so much to offer, we also knew our experiences were no more or less important than those of the other patient leaders and therefore we worked very well together.

      Whether it was because we were able to “frame” the issues so succinctly or because these company executives had already been through this exercise with our patient leader colleagues in Europe, I have never seen executives so “engaged” on a number of levels (i.e., listening, speaking, note-taking, organizing, etc.) while still maintaining such a welcoming and casual atmosphere.  By the mere fact that we were listened to so intently, I am now so enthusiastic about the future and how patients will be universally treated.  It may take time for Patient Centricity to become “the” standard in healthcare but when smart progressive companies are investing in devising a thorough definition of it, something tells me I have been included in a cutting-edge and industry-leading initiative and for that, I feel privileged.     Stay tuned.

Please feel free to comment on a Patient Centricity healthcare standard.

Please feel free to comment on a Patient Centricity healthcare standard.

The Walking Gallery of Healthcare

Walking Gallery of Healthcare Jacket 387

My ridiculous pose is a byproduct of being exhausted as I had to show the front part of the Jacket and it was late at night. :)

My ridiculous pose is a byproduct of being exhausted as I had to show the front part of the Jacket and it was late at night. :)

July 7, 2015

      I am INCREDIBLY HONORED to be officially included in the Walking Gallery of Healthcare (which has representatives on five continents) by my receipt of Jacket 387, in Year 4 of its existence (as of June, 2015, there were 392 unique Jackets).  The artist and healthcare advocate behind the Walking Gallery is the extraordinary Regina Holliday.  I can’t explain her innovative concept better than her so below are some quotes of hers which I have lifted from her Medical Advocacy Blog:

“This is the fourth year of the Walking Gallery of Healthcare.  We now number 357 members walking around the world with patient story paintings on our backs.  There are 43 artists in the Gallery and all of them are listed at the bottom of this post. 

An artist or artists will interview medical professionals and lay individuals to form a patient centric narrative. The artist will then create representational imagery and paint that picture story upon the business jacket of the provider of the narrative account. The provider of the patient story aka “Walker” will wear the jacket to medical conferences and events in order to disseminate the patient story to a large group of policy minded attendees and to represent the individual patient voice in venues where they are underrepresented. Further, both artist and walker will support the spread of the story and image via social media…. Its widening appeal within the health conference community is creating a new space for patients at such events.”

     Bottom Line:  Thanks to the extraordinary and innovative efforts of Regina Holliday, The Walking Gallery of Healthcare has helped give true meaning to the phrase, “Patient Centricity.” 

Please feel free to comment on this extraordinary and innovative advocacy work initiated by Regina Holliday (and no making fun of my picture) :)

Please feel free to comment on this extraordinary and innovative advocacy work initiated by Regina Holliday (and no making fun of my picture) :)

“Patient Centricity” & treating the entire Person

      On Friday, July 5, 2015, I conducted this Video Interview with the WINNERS of the “Doctors 2.0 & You” annual Start-up Contest in Paris, France. “Can Surround,” the 1st place finisher, is a company which focuses on treating the emotional aspects of cancer patients for the purposes of healing and/or improving the effectiveness of the different medical treatments. Having spent a significant time editing this video, at some point I began to think this could be a significant development in global healthcare because it at least illustrates, and may ultimately demonstrate, that medical professionals are recognizing the “mind-body connection” in treating serious diseases such as cancer. In short, I imagine their thinking to be something to the effect of: “There may be significant medical value to treating the entire “person” and not just that “part” of the patient which is affected by the cancer.

     No-one is saying there is a definite “cause & effect” relationship between mind and body but a medical company like “Can Surround” is validating something all people who’ve had the unfortunate experience of battling cancer would agree upon, namely, it is a grueling experience on a variety of fronts which has damaging effects on not only the patient’s physical well-being but also on the patient’s emotional state. Moreover, there are many highly regarded medical studies which conclude, and prestigious medical professionals who believe, that medical treatments for cancer typically work best on the patients with the most positive or healthiest of attitudes. Admittedly, this is a difficult criterion to measure and that may slow the “buy-in” of health insurance companies on these progressive types of treatments offered by companies like “Can Surround” but there appears to be only UPSIDE in stabilizing a cancer patient’s emotional well-being. Therefore, perhaps “Can Surround” will prove this concept and then similar “start-ups” will emerge which treat the emotional components or emotional ramifications of other serious diseases and conditions like Inflammatory Bowel Diseases, Rheumatoid Arthritis, Lupus, Multiple Sclerosis, COPD, Diabetes, etc.?

     Eventually, even health insurance companies will come to realize the cost-savings and likely enhanced effectiveness of various medical treatments associated with a relaxed and optimistic cancer patient but probably only after companies like “Can Surround” replicate such results so many times that even a monkey would concede the connection between mind and body in healing, recuperating and positive outcomes of drug therapies which have less than perfect statistical success rates. But with the propagation of more and more “Patient-Centric” hospitals and treatment facilities, it seems medical professionals are acknowledging that just because a person becomes a patient with a serious disease, they NEVER stop being a “person” whose understandable emotional fragility could be the difference-maker between life and death.

     Between a company like “Can Surround,” focused on a cancer patient’s emotional well-being winning the 2015 “Doctors 2.0 & You” Start-up Contest amongst stiff competition from other medical companies offering products and services which can also “make a difference” in global healthcare and “Patient Centricity” seriously becoming a primary objective of prestigious hospitals and pharmaceutical companies, health insurers might surprise us and beat that monkey in realizing the potentially enormous cost savings and higher-than-usual success rates in treating the entire person and not just that part of the patient which is diseased.

(For more detailed information about the 2015 “Doctors 2.0 & You” Start-up Contest, please read the official Press Release announcing “Can Surround” as the Winner.)

Please share your thoughts and comments about medical treatment encompassing the "Person" and not just the "disease part of the Patient."

Please share your thoughts and comments about medical treatment encompassing the “Person” and not just the “disease part of the Patient.”

Crohn’s & The CDWP

"Patients helping other Crohn's Disease patients is often the best medicine" is why I formed the IBD Charity, "Crohn's Disease Warrior Patrol."

That’s me in the spotlight at “Doctors 2.0 & You” in Paris, France, explaining I formed the IBD Charity “Crohn’s Disease Warrior Patrol” because “Patients helping other Crohn’s patients is often the best medicine.”

     This picture is of me presenting the logic behind my formation of the 501 (c)(3) Charity, “Crohn’s Disease Warrior Patrol” [CDWP], at the recent 2015 “Doctors 2.0 & You” in Paris, France. More specifically, after reading seemingly repetitive healthcare social media (hcsm) posts by frustrated, scared or depressed Crohn’s Disease and Ulcerative Colitis patients, I thought Inflammatory Bowel Disease (IBD) patients should utilize the various hcsm platforms TO HELP EACH OTHER.

     Due to the autoimmune and incurable realities of Crohn’s and Ulcerative Colitis, even the most compassionate and dedicated of healthcare professionals can only do so much. With so many variables contributing to the broad spectrum of an IBD, an almost personalized version of the disease seems to affect different patients. But thanks to the technology-powered hcsm “grassroots movement,” Crohn’s Disease patients with the oddest symptoms or strangest flare-up triggers, for example, can commiserate with similarly peculiar Crohn’s patients from all over the world.

     The CDWP tries to MATCH these patients with one another based on a variety of commonalities so that: “Patients helping other Crohn’s patients, is often the best medicine.” This is primarily conducted at the CDWP website but the CDWP has become a mindset for patients to cling to when all the world of medicine has to offer is a kind doctor, an understanding nurse, biologics, prednisone and painkillers. Indeed, “Patients helping other Crohn’s Disease patients, is often the best medicine.”

     To sign up to be a CDWP “Warrior” who occasionally volunteers to make a phone call, initiates a Skype session with the family of a petrified child who’s not responding to the most potent of medications or visits a stressed-out hospitalized Crohn’s Disease or Ulcerative Colitis patient simply to let him or her know that we are in this together, please fill out the Veteran Patient Signup Form here on the CDWP website.  To simply show camaraderie for your IBD brethren, you should also sign up to be a CDWP “Warrior” or “Veteran Patient” because, after all, it’s the required mindset to shine despite the darkness perpetrated by the potentially pervasive effects of Crohn’s Disease, Ulcerative Colitis and all their complications, peripheral manifestations and drug side effects.

The CDWP goes Global at the recent 2015 "Doctors 2.0 & You" in Paris, France.

The CDWP goes Global at the recent 2015 “Doctors 2.0 & You” in Paris, France.

Crohn’s – “Should I stay or should I go” to the Hospital?

Crohn's Disease - Should I stay at home or should I go to the hospital?

Crohn’s Disease – Should I stay at home or should I go to the hospital?

       It’s been a while since I’ve posted but that’s because I had some opportunities to speak about Crohn’s Disease in some very cool places around the world and then, ironically, I had a very serious Crohn’s flare-up and was hospitalized at Mt. Sinai Hospital in New York City for a week or so.  I am better now so I thought I’d take advantage of this rainy-Sunday to address a VERY important issue which seems to come up every day on the different health care social media platforms.  That is, how do I know I am sick enough to warrant going to the hospital for my Crohn’s Disease or Ulcerative Colitis?  In other words, should I stay at home or should I go to the hospital?  This decision-making process has become so important to Inflammatory Bowel Disease (IBD) patient care and to health insurance coverage for same that many would say having to make this decision in a such a physically or mentally compromised state is simply just another symptom involved with managing Crohn’s Disease.

      This question is predicated on the IBD patient’s vast experience being hospitalized and thus knowing what they’d be in for in the hospital. With IBD, hospitalizations typically involve either no-brainer emergencies like severe intestinal obstructions or severe flare-ups which require intravenous treatments to avoid becoming emergencies.  Accordingly, an experienced patient typically contemplates managing the flare-up as an outpatient, which could however involve waiting around too long for various doctor appointments and the scheduling of diagnostic tests and thus this patient runs the risk of winding up in the hospital anyways, or going directly to the hospital emergency room (after seeing and speaking to their gastroenterologist so he or she is aware that a hospital admission is required) to facilitate being admitted to the hospital.

      But before deciding on which path to take, the experienced Crohn’s Disease or Ulcerative Colitis patient considers what awaits them in the hospital such as the extremely uncomfortable insertion of a Nasogastric (NG) Tube into their intestine through their nose like a human siphon, having to BEG for adequate pain relief, possibly being unnecessarily chastised by some doctors who think the diagnostic test results don’t sync up with the patient’s complaints of pain, defending their decision to be hospitalized while the skeptical, lazy doctors are waiting to be hit over the head with a diagnosis which is rarely “black and white,” dealing with young Residents who think they know it all when the patient knows more about his or her disease than the Residents do, being forced to check their dignity along with their personal belongings into those plastic hospital-issued bags, missing days of work or school or not being able to attend various personal or parental events and feeling like being locked up in some type of medical prison.

        Based on my 30 years with Crohn’s which includes over 200 hospitalizations with 50% of them being emergencies and thus no-brainers, I still go through the above “should I stay or should I go” hospital analysis and when the pain is too much for me to handle with the drugs supplied to me by my Pain Management Physician, I know it is time to get to a hospital.  When I have an intestinal obstruction which won’t abate after I stop eating and live on liquids for a few days, I know I must go to the hospital.  There are several other “indicators” which I rely upon and as I have gotten older I definitely skew towards NOT GOING TO THE HOSPITAL but I also know that as much as I loathe the hospital patient experience, sometimes it could be foolish or even life-threatening to try and “self-treat.”  In that regard, patients must recognize the indicators for THEIR DISEASE which mean they must get to a hospital.

         Let’s face it, there is a difference between being tough and reckless.  But the other day I read the below post in health care social media [it is anonymous to preserve the identities of the people involved] and I learned that no matter how experienced, tough or smart of a patient you are, the potential for Crohn’s Disease, Ulcerative Colitis or other IBDs to quickly cause life threatening situations can make any patient wrong, VERY QUICKLY.  While we fear and despise being hospitalized so much that we are comfortable assuming “some” degree of risk, sometimes, tragically, our decisions to avoid the often barbaric treatment we receive in the hospital can seal our fate, PERMANENTLY.

For those of you who are in so much pain but fear the hospital or want to avoid contacting a doctor about your symptoms, please read on. My friend’s wife died last week from an infection due to her IBD. She had been to the hospital and then ordered a follow-up with her GI doctor in ten days. She only lived 9 of those ten days. Her condition worsened when she got home but she refused to go to the ER. She thought everything would be fine when the doctor saw her [thinking] he would know what to do. The ninth day came and her daughter told her she looked like hell and she was taking her to the hospital. She passed away that evening in an Urgent Care Center. Her infection had spread to her liver, pancreas and kidneys. Her oxygen/blood levels were half of what a normal person would have. Half of her red blood cells had been replaced by white blood cells. Her husband had [also] urged her to let him take her to the hospital 3 times the week before she died and she would not go.

I get it. I hate hospitals too but, I remember the night I went to the ER and dodged death. If I hadn’t, I would not be here. It takes courage to go. It’s admitting you’re weak, but really it’s not. You are pretty brave by making the decision to get emergency treatment. I partly blame my first GI doctor for my trip. I was at his office for a routine checkup and he was pushing in on my stomach as most [GI doctors] do. It was quite painful and I tensed up, yet he kept pushing harder and harder telling me to relax. My colon was very inflamed but he pushed so hard he literally crushed it and it burst. [T]hat night, it hurt so bad I was crying. I didn’t want to go to the hospital. I didn’t want to put anyone out or bother them to drive me. I was in no condition to drive. But if I hadn’t, I would have died from septic shock or poisoning in a short matter of time. I nearly bled out after the surgery, as it was.

So, friends, don’t wait as long as I did or my friend’s wife did. This disease [can be] a serious killer. I know we sometimes wish we were dead and didn’t have to suffer, [I know,] I have. It would be so much simpler, but think about your loved ones and your friends. How would they feel if you left? Take this seriously. Nobody wants to tell your story prematurely.

          My sympathies go out to this brave patient who shared this story and to the woman who passed away and to all the people who loved her but I am thankful he was so frank in his post because it made me reevaluate my decision-making process with respect to “should I stay or should I go” to the hospital.  For example, when I returned from Europe a few weeks ago and knew I was experiencing a serious Crohn’s flare-up, my initial instinct was to simply see my long-time NYC GI doctor and go for various diagnostic tests.  But I doubled-over in pain in his office and he hadn’t seen me do that in many years.  He immediately started writing my Admission Orders and I still protested, asking for the weekend on a high dose of Prednisone to hopefully help me avoid another hospitalization.  He did not agree but because I had to go back home anyways to arrange for Nursing Care for my Mom in my absence, he acquiesced.  But when I got back home and kept feeling like someone was violently twisting my intestines and the pain jolted me from my chest down to my knees, I knew it could only get worse and I did not want my situation to become an emergency.  After being discharged a week later and reading the above Post, I felt LUCKY.

     If you take anything away from this Post, please don’t let the dignity-deafening experiences which occur in a hospital affect your “should I stay or should I go” decision to go to the hospital with Crohn’s Disease, Ulcerative Colitis or any other type of IBD.  Trust your body because it is always better to be safe, than sorry.         

How do you know when you must go to the hospital with an IBD flareup?

How do you know when you must go to the hospital with an IBD flareup?

My IBD British Brethren in London

Dear London-based IBDers:

       I will be staying in a downtown London hotel from June 7th to June 10th and if you are interested in being interviewed for a Documentary my non-profit is producing on raising global awareness of the potential severity and pervasiveness of Crohn’s Disease and Ulcerative Colitis, I would very much like to make your acquaintance and I encourage you to contact me.  My Twitter Handle is @HospitalPatient and you can email me directly from this Blog at michaelweiss@hospitalpatient.com.

     “Patients helping other IBD patients is often the best medicine.”   

        By way of brief background, my Inflammatory Bowel Disease (IBD) non-profit 501 (c) 3 charitable organization called “Crohn’s Disease Warrior Patrol” [the “CDWP“] has been working on various media projects aimed at raising global awareness of the potential severity and pervasive nature of IBDs like Crohn’s Disease and Ulcerative Colitis.  One ongoing project has been a Patient/Caregiver-Driven Documentary, “From the Patient’s Perspective …,” in which various IBD patients, their Caretakers, friends, family members and others affected by their disease share relevant insights about the medical, psychological, emotional, financial, familial, social and professional effects of IBD, its treatments and its peripheral manifestations. We believe this more mainstream method of examining the seemingly ubiquitous and personalized challenges posed by Crohn’s Disease and Ulcerative Colitis stands the best chance of reaching the most people who possibly have never even heard of “Crohn’s Disease.”  Furthermore, we also believe this Documentary best represents the simple premise upon which the CDWP is predicated:  “Patients helping other IBD patients is often the best medicine.”

Why trust ME with your IBD stories?      

        For those of you who are not familiar with my Crohn’s Disease advocacy efforts, I have had a case of “Severe Crohn’s Disease” for approximately thirty (30) years and have undergone approximately twenty-five (25) Crohn’s-related surgeries and done plenty of time in hospitals all over the United States, during my two hundred-plus (200+) formal admissions and/or emergency room episodes.  Throughout this time when my disease was at its peak of unpredictability, I had to contend with law school, business school and then, coincidentally, a variety of experiences surrounding film-making, as both an entertainment attorney and independent film producer.  When my doctors became concerned about the aggressive nature of my “obstructional” Crohn’s Disease, they sought practically every available medicinal method to stave off more surgeries.  That’s when they introduced me to the lovely world of potent immunosuppressants and immunomodulators like the biologics.  That’s also when the peripheral manifestations of my Crohn’s Disease became more pronounced and eventually conspired with the gastrointestinal effects of my disease and rendered me systemically disabled in 2010.

       In short, during the worst of it there appeared to be a logical nexus between the combination of my delayed Anaphylactic reaction to the biologic drug Remicade and the severe respiratory conditions I began to experience soon after being on the biologic drug Humira for several months such that these potent drugs caused such a severe inflammatory lung condition of first impression that I could not talk and breathe at the same time.  The resulting “shortness of breath” made me worry about each and every second of my breathing process. Many times I thought I would die in my sleep because each breath took so much effort and I was concerned I might “forget” to breathe while sleeping.

          Eventually it was my genius gastroenterologist, Dr. Mark L. Chapman, who saved my life when all sorts of steroids and super-antibiotics failed.  But it required two (2) intense rounds of “T-Cell” chemotherapy which alleviated the lung problem but, naturally, the chemo caused some other lifestyle-altering medical problems.  To this day, no pathologist in the United States has been able to identify the pathology of the two (2) surgical lung biopsies conducted on me which yielded significant amounts of inflamed, necrotic lung tissue.

        Crohn’s Disease has also caused me to undergo two (2) Cataract surgeries in my early 40s and I now suffer from such severe “Dry Eye” that in the recent past I cut my Cornea simply by blinking my eye when I awoke from sleep one night to use the bathroom.  Then last year at the relatively young age of 51, I required Left Hip Replacement Surgery.  It was successful but due to my body’s inefficient way of thwarting “inflammation,” I am still in physical therapy and battle severe pain daily.  If you have IBD and you’ve had to take several different drugs to stay out of the hospital and/or to ward off surgery, then you are intimately familiar with these challenges.  That said, I still feel LUCKY compared to other IBD patients I have been privileged to meet.

        Please understand I do not list my IBD experiences for anyone to feel sorry for me.  They are only posted here for credibility purposes.  Moreover, I look at each and every new medical problem I encounter as a result of IBD as “content” for me to share on the internet in the various health care social media platforms so others can learn about it and hopefully avoid it.   In 2001 I wrote a very successful and funny book about my experiences with such a severe (and often misunderstood/misdiagnosed) case of Crohn’s Disease called, “Confessions of a Professional Hospital Patient.”  While the book is very informative and instructive about the “hospital patient experience,” many people have told me, and told others, that it is “laugh out loud funny” and they find that shocking given the underlying subject matter.  But I’ve learned to use my sense of humor to ensure Crohn’s Disease only affects my body and not my mind.

       Thankfully, the book continues to sell and ever since 2010 I have become a full-time IBD advocate when my health permits me to do so.  In that regard, I try to contribute to active IBD social media groups every single day even if that means giving out my telephone number to a Crohn’s patient near to my age who is anxiety-ridden about his fast-approaching 30-year high school reunion because many of his friends have become titans of industry and even celebrities when “all he has done” is battle Crohn’s Disease.  I had no idea what to tell him when I gave him my number, as I share some of those same anxieties, but I knew that when we spoke we would laugh at what we’ve both been through and thereafter there’d be an unbreakable bond between us.  I hoped to leave him feeling like he’s been successful at a very difficult task, namely, managing his Crohn’s Disease and carving out a “happy life” for himself.

         Every time I interact with IBD patients, especially on the telephone, I learn something new about the disease or how to better cope with its challenges.  This always leaves me feeling an unspoken kinship with other IBD patients that: WE ARE ALL IN THIS TOGETHER.  In keeping with this patient unity objective, the “Crohn’s Disease Warrior Patrol,” dons a rather corny name because it serves both a literal purpose and the required state-of-mind to persevere.  Its actual purpose is matching experienced IBD patients with newer ones who seek disease information which even the most compassionate of medical professionals cannot convey either due to time constraints, their ethical requirement to remain objective or because of any number of many other reasons.  But the CDWP also represents the “patient state of mind” necessary to not only meet all the medical challenges but also to share with newer IBD patients what is learned during that process to offer them a “been there, done that” perspective.  Doctors can only do so much with such a mercurial disease so patients must help each other and create an environment in which: “Patients helping other IBD patients is often the best medicine.”  It took me 20 years with Crohn’s Disease to realize this and I don’t want any other IBD patients to have to wait that long to feel as good, and live as well, as is possible.  To that end, I can only hope the person attending the high school reunion gave himself the credit he deserved for so bravely managing and coping with his disease.

I want the World to better understand IBD  

            I just want the world to hear from IBD Patients.  I want the world to hear about gastroenterologists who ask their patients which biologic drug they should start with; such that the patient then posts that query in a Facebook IBD Group looking for the answer from experienced patients, each of whom have completely different DNA and also different mitigating or agitating disease factors; not to mention that each biologic drug, whether it is Remicade, Humira, Cimzia or Entyvio, is technically a DIFFERENT DRUG and is designed as such FOR A REASON.  I want to convey some of the hospital horrors such as when I wound up in the same New Jersey emergency room 3-times in one (1) week at approximately 3-AM only to encounter the same Armani-slippered Covering Doctor who got so frustrated at the inconvenience that due to his arrogance and condescending tone he refused to LISTEN to me and MISSED EIGHT (8) INTESTINAL OBSTRUCTIONS! (This was revealed the very next day when I had to travel into New York City to see my main gastroenterologist, Dr. Mark L. Chapman, and he ushered me to the only radiology practice in town which still performed the unbelievably uncomfortable “Enteroclysis” test.  But the results saved my life by prompting emergency surgery.)

        Dr. Mark L. Chapman has been my main gastroenterologist since I was formerly diagnosed in 1984/85.  He is one of only three (3) gastroenterologists trained by Dr. Bernard Burrill Crohn who’s still practicing.  Dr. Chapman is the Medical Expert for the Documentary.  Below is an example of some footage I recently shot of him.

         While there are doctors who regularly admit the same IBD patients to the same hospitals offering the same treatments indicating ZERO development of a different or, dare I say, possibly effective TREATMENT PLAN which might actually work and there are gastroenterologists who won’t sign off on disability applications unless the IBD patient exhausts every biologic drug available despite him nearly dying from previous similar experiences, there are also INCREDIBLY COMPASSIONATE medical professionals and caregivers who IBD patients interact with and I’d love to hear those stories too.  I’d also like to hear about the different ways by which people “cope” and “manage” their disease.

        I’m also always interested in what I refer to as the “Diagnosis Journey,” because with Crohn’s Disease, Ulcerative Colitis or Indeterminate Colitis, it can take a long time and involve dignity-deafening experiences because some doctors only act upon “black or white” diagnostic test results even though it has been well-established that “grey” is usually the color of the day.  These same doctors often refuse to believe a patient could accurately convey his or her symptoms to supplement these “grey” diagnostic tests because “what can they possibly know?” Call me crazy but experiencing the often painful symptoms of IBD and clutching the tiled floor in a public bathroom to brace yourself for the onset of intolerable pain does give you a certain amount of credence.   These doctors make patients “make their case” as if they are “defending their lives.”  It is then when a patient’s dignity comes into the picture and I think these types of doctors should be ashamed of themselves.

But you don’t look sick?  

        I could go on and on but suffice it to say, I simply want the world to hear about the still too often barbaric hospital treatments (like the insertion into the human body of a SIPHON to stave off the effects of intestinal obstructions, which hospitals call an “NG Tube”) and the potent medications which come with possible life-altering side effects yet they are only aimed at silencing IBD SYMPTOMS and are not developed as IBD CURES.  I am also interested in how different IBD patients deal with the financial effects of obtaining the best medical care, choose a career given IBD’s unpredictability, decide to seek pain management assistance, etc.  Most of all, if people always tell you, “But you don’t sick?”  – I want to hear YOUR STORY – especially if you’ve had a rough go of it with any IBD such that your VOICE can help other patients.

        I am writing this Post NOW because I will be in a nice downtown London hotel from June 7th through June 10th because I am speaking about Crohn’s Disease and the Crohn’s Disease Warrior Patrol at “Doctor’s 2.0 & You” in Paris, France from June 4th to June 5th.  To that end, I figured since I will be in Europe, I would LOVE to meet some kindred spirits in London and add them to the Documentary.  Accordingly, if you are interested in sharing interesting stories about IBD which further my contention regarding the lack of global awareness of just how bad IBD can get, PLEASE contact me.  My Twitter Handle is @HospitalPatient and email is michaelweiss@hospitalpatient.com.

         I look forward to meeting my IBD British brethren.

If you will be in downtown London, June 7th to June 10th, 2015, and you'd like to participate in a Documentary to raise global awareness of the potential severity and pervasive nature of Crohn's Disease and Ulcerative Colitis, please contact me.  Thanks.

If you will be in downtown London, June 7th to June 10th, 2015, and you’d like to participate in a Documentary to raise global awareness of the potential severity and pervasive nature of Crohn’s Disease and Ulcerative Colitis, please contact me. Thanks.

Doctors who don’t LISTEN

The fallacy of trusting some Doctors

The fallacy of trusting some Doctors

     I had a horrible doctor appointment today with a local well-respected Ophthalmologist.  In order to see her, I had to complete a PRE-APPOINTMENT 30-Page “Patient Information Packet.”  It included all the typical information but also demanded precise details regarding the medications I was taking, the eye surgeries I have had, CDs of any recent Head or Brain CTs or MRIs and a most accurate/succinct description of the reason I sought her expertise.  I complied even though it was time-consuming and somewhat costly. But, I assumed my diligent efforts and investment would pay off with being the beneficiary of this physician’s undivided attention and sage advice. I was a SCHMUCK.

      In short, I’ve had Severe Crohn’s Disease for 30 years and have had 2 Cataract Surgeries, an Ocular Migraine and Severe Dry Eye so bad, that my local eye doctor recently put me on the drug “Restasis” because he felt the time had come where the vision in my left eye could be compromised.  That scared the crap out of me so I resorted to the above as I felt he was venturing into territory in which he was no longer qualified to travel or at least there were doctors who presumably specialized in eye problems experienced by patients with inflammatory-based autoimmune diseases.  There are, so I made the appointment.

       I arrived at the facility on-time and an efficient technician took various measurements of my eyes by rote.  He asked me why I was there and after cutting me off before I could explain the possible pervasive aspects of my problem, he told me my Crohn’s Disease is something they don’t consider in evaluating my eyes.  Huh?  I had been CRYSTAL CLEAR with the kind folks who set up the appointment and they assured me this was the correct doctor to see given my carefully articulated concerns.  When I tried to explain how my eye had been so dry in the past that I once cut my Cornea in my sleep as I slowly awoke and merely blinked my eye, he was unfazed and kept moving forward with the tasks for which he was responsible.  I was like a pimple on his ass which wasn’t bothering him at the moment so he didn’t have a care in the world.

      He walked out of the room not saying anything and then another doctor-looking person came in and escorted me to another ocular-exam-looking room.  She placed me in the chair saying NOTHING.  I tried to ascertain who she was and what I was doing in this new room, but she apparently had the personality of a handball since she could not speak.  I understand that certain people don’t want to get “chatty” with the patients but when a patient is being moved from one room to another, by different people, and each looks at you like there is a palpable smell of “ass” in the air, I’d like some additional information.  Call me crazy.

      I waiting in the chair.  Then I waited.  Then the doctor walked in.  I could sense immediately when she came in that the ass-pimpled technician and/or the human handball must have told her I was a “difficult patient” who didn’t belong at this particular Ophthalmic Practice. She smiled with the sincerity of the last man at the disco smelling from “Old Spice” and asked me what brought me to see her. I succinctly explained my predicament and that I was concerned my local eye doctor was in over his head and/or I hoped there were specialists for this sorta stuff and I was told she practiced within that specialty.

      Her preconceived agenda was obvious as she interrupted me almost immediately to ask me how my vision was.  I told her I wished she’d let me finish because my medical concerns were more about the future given the possible progression of my Crohn’s Disease and some possibly hereditary contributions.  She didn’t listen to a word I said and instead interrupted me again and this time, in the most condescending manner, she took the opportunity to didactically “teach” me how to interact with a physician.  She said something to the effect of: “This is a conversation; I may interrupt you; you may interrupt me.”

       To myself I said, “You are a condescending a-hole.  But unfortunately you practice the specialty of medicine I need to consult with in order to better understand my medical problem such that I could devise disease management strategies so I never have to be treated so inhumanely.” But I respect doctors so I thought I would appeal to her sense of “reasonableness” and I interrupted her and respectfully explained that I would appreciate her LISTENING to my succinct story especially since it is ALL SPELLED OUT IN THE 30-PAGE “Patient Information Packet” I HAD TO FILL OUT PRIOR TO THE APPOINTMENT and she hadn’t yet even TOUCHED THE DOCUMENT and its numerous attachments!  She did not react too kindly to my suggestion and while moving back in her chair to exit the room she suggested to me that perhaps this was not a good “fit” and that I should see another doctor?

      While I SAW RED IN MY MIND, I was quickly emphatic that I was not going ANYWHERE after her office staff confirmed several times SHE WAS THE DOCTOR I SHOULD SEE GIVEN MY PROBLEM and because I had spent a great deal of time and some money providing her with precise medical information about my rather unpredictable and complex case which she hadn’t taken the slightest interest in as evidenced by her refusal to merely LISTEN to me.

         I think she was a bit surprised that I stood up to her so firmly and without one second of hesitation, so she finally started to listen.  But she kept interrupting me and NOT ONCE DID SHE LOOK AT THE 30-PAGES OF INFORMATION I HAD SUPPLIED nor did she ask what medications I was taking.  She then performed the same perfunctory eye exams that my local eye doctor had performed and proclaimed my vision to be very healthy.  Her patronizing positive emphasis was made to make me feel as if I had just gotten a kiss on the cheek from Beyoncé and noticed a special gleam in her eye indicating that, just maybe, we had that rare connection.  I was being played as she simply wanted to get through the examination without incident and I was getting angrier by the second.  I respectfully asked her for her MEDICAL ADVICE in terms of how long to take the Restasis and her response was so safely legally generic it was as if I had asked the guy at the local Hardware Store what he thought.  It was a COMPLETE WASTE OF TIME.

         The only positive occurred a few minutes later when I politely told the front office staff that I had just been treated like a piece of garbage by their physician. The office manager, Allison, took me aside and asked me about my underlying condition.  She was genuine and interested.  After a TWO (2) MINUTE CONVERSATION, she said this:  “If you were my brother, I would send you to Dr. **** because all he does is specialize in Inflammatory Conditions involving the Eye.”  THAT DOCTOR IS EXACTLY WHO I NEED TO SEE yet I had to sit through this bullshit charade.  I thanked her profusely and she gave me this doctor’s business card and even wrote the phone numbers of his new offices on the back of the card.

       I don’t understand why some doctors act so arrogantly and inhumanely when one day it is CERTAIN that they too will be patients.  This becomes even more bothersome when I have the absolute privilege of meeting doctors, nurses, nurse practitioners and physician assistants who LISTEN and want to help me and attempt to bring to bear their talents and experience to help solve or address my medical problems.  Maybe the Hippocratic Oath and its corollaries should not include something seemingly simplistic and legally motivated such as: “Do No Harm.”  Instead, the ENTIRE OATH should be: “Respectfully, listen to the patient and try to identify, and then, if possible, solve or manage his or her medical problem.  If you cannot do so, respectfully refer the patient to another doctor who can.”

Why Crohn's Disease and Ulcerative Colitis patients must help each other as Doctors tend to shy away from the "grey," weekends, holidays & ER Trips.

Please leave your comments about patient experiences with disrespectful doctors

When Doctors disappear, Crohn’s Disease Patients ONLY have each other

The grim reality for Crohn's Disease & Ulcerative Colitis patients.

The grim reality for Crohn’s Disease & Ulcerative Colitis patients, especially on weekends and holidays.

     Another weekend went just went by during which I encountered a very experienced and intelligent patient with Crohn’s Disease posing the following question to a well-trafficked Inflammatory Bowel Disease (IBD)-dedicated “Group” within a health care social media platform: “Do you think I should to the hospital?”  The question was followed with his symptoms following recent Bowel Resection Surgery during which his terminal ileum was removed. That vital information was followed by a succinct description of his most immediate three (3) experiences going to the closest emergency room (ER) for these very same SERIOUS symptoms and being swiftly discharged (after waiting an average of 5 hours each time to be seen) and told by the ER staff, “You have Crohn’s Disease, you have to learn how to accept it and deal with it.”  WTF?????

        I have been in this unenviable situation at least seventy-five (75) times when the area in and around a fairly recent Bowel Resection Surgery or Strictureplasty for my Crohn’s Disease started to cause pain and partial obstructions.  Pain can be addressed with medication but the source of the pain MUST BE DETERMINED because the brewing underlying problem could be LETHAL.  If that is the case, why are ERs around the United States so quick to discard these patients?  Granted, there is no knife in these patients’ stomachs but metaphorically they could be in a worse position.  Incredibly, I don’t blame the ER staff because they must triage patients and simply patch them up so they make it through the weekend or holiday and get to see their doctors as soon as possible.  Therefore, where are the gastroenterologists over the weekend or during a holiday when a post-operative Crohn’s Disease patient develops painful and potentially dangerous complications?

     When I was younger and was in this position, the best strategy from a patient’s perspective was to call your gastroenterologist and if he or she recommended you go to the hospital, you were going under the auspices of your doctor and that held a great deal of credence.  But with the advent of “hospitalists,” there is no longer a “personalization” to emergent patient care for those patient’s suffering from incredibly complex, chronic, incurable autoimmune illnesses like Crohn’s Disease.  This was also not a patient crying “Wolf,” nor “Uncle” at the first sign of discomfort.  This patient had endured painful symptoms for several days and his doctor didn’t seem that concerned even though they seemed to be worsening and the weekend was quickly approaching.

     What is wrong with some doctors who refuse to anticipate the type of situation this desperate patient was put in this past weekend when he essentially “crowdsourced” his decision to yet again go back to the emergency room for dangerous symptoms related to a recent Bowel Resection Surgery for his Crohn’s Disease?  Don’t they understand how the status of a post-operative Crohn’s Disease can turn on a dime?  Don’t they have any compassion for a patient who has been through several surgeries such that his word should be trusted that something is wrong?  Are they waiting for the patient to pass out from intestinal-perforation-type pain in order to take them seriously?

      Granted, I understand that some Crohn’s Disease patients have a very difficult time managing the disease, especially post-operatively when unrecognizable “healing pains” may occur or bowel habits may change and worry sets in which often sends them to the ER needlessly (and when I was younger, this did happen to me).  I also understand that ER personnel are not trained to spot or treat the nuances of the different degrees of Crohn’s Disease.  But the patient’s gastroenterologist should take more interest in the patient when he or she respectfully contacts them with a potential problem and a weekend or holiday is fast-approaching. 

 Crohn’s Disease is hard enough to manage without gastroenterologists NOT trusting experienced patients. Moreover, scheduling a future out-patient diagnostic test to resolve the experienced patient’s problem when it appears likely to be a fistula, abscess, infection or obstruction is UNACCEPTABLE.  Something has to change when an experienced Crohn’s Disease patient is so “scarred” from past 5-7-hour unhelpful ER visits that he Crowd-Sources his decision to go back to the ER when he is obviously VERY SICK and his doctor has left him with no instructions to rely upon for guidance.

    Sadly, I have come to accept this situation as just another “symptom” of Crohn’s Disease.  While this may sound like a complaint more appropriately directed at the overall United States healthcare system, IBD patients certainly know what I mean.  It quickly becomes demeaning and the patient’s input becomes determinative of care and timing of care yet too many gastroenterologists and ER doctors don’t “trust” patients with Crohn’s Disease or Ulcerative Colitis because it is never a “black and white” situation; always grey.  Too many medical professionals these days are uncomfortable “solving problems” and operating in that “grey area” so IBD patients please understand that we MUST HELP EACH OTHER.  That’s very sad and this is why, “Patients helping other IBD patients is often the best medicine.”

Why Crohn's Disease and Ulcerative Colitis patients must help each other as Doctors tend to shy away from the "grey," weekends, holidays & ER Trips.

Why Crohn’s Disease and Ulcerative Colitis patients must help each other as Doctors tend to shy away from the “grey,” weekends, holidays & ER Trips.