Crohn’s Disease & IBD – Interview w/ an Expert

USE Chapman Blog Pic July 9 2014

Chronic patients must adapt to different doctors

As a 30-year Crohn’s Disease patient, I’ve met every conceivable type of physician and encountered them on probably their (and my) best and worst days.  With such a complex and seemingly “personalized” disease, I’ve learned there’s rarely a doctor-patient “comfort zone” such that they “take you at your word” when you articulate your symptoms, as rare or strange as they may be, or when you convey your surgical scarred-substantiated veteran thoughts.  But that’s the gig with a chronic, incurable, autoimmune disease like Crohn’s so you must learn to adapt to the different personalities you meet along the way in order to quickly and effectively communicate to obtain the best possible medical care.  When you are diagnosed at the relative young age of 21, the process of adapting also most assuredly includes difficult school, work, family or life relocation decisions which translates into even more “new” doctors with whom to meet and get along with.  This was all true for me but unbeknownst to me at the time, I was lucky; my first Crohn’s doctor turned out to be “THE” Crohn’s Disease doctor.

Sometimes the “first” doctor is the “best” – who knew?

Ironically, it was my first gastroenterologist, Dr. Mark L. Chapman, who instilled in me the necessary courage and confidence to leave his “care jurisdiction” by making those life relocation decisions strictly “on the merits” and not in any way, shape or form influenced by the fear of having to find another Crohn’s Disease doctor with whom I could communicate so intimately; all because we had developed such a uniquely mutual trusting rapport.  By necessity, I tried to re-create this relationship in different parts of the United States, at different times of my life, and its been 30 years, but I’ve never found another Crohn’s or IBD doctor like Dr. Chapman who is so adept at being able to identify and treat so many of the Crohn’s “curve-balls” which initially make me bend at the knees but then wind up painting the corner of the plate as painful, frustrating or disabling strikes which disrupt my life and make me take notice of their potentially pervasive effect on my life or lifestyle.

*“From Tuscon to Tucumcari, Tehachapi to Tonapah” – “Willin’” 

Even though my life’s journey has thus far included prolonged residence in, and visits to, wonderful cities like Boston,  Los Angeles, Portland, Oregon and Paris where I encountered compassionate and expert doctors, and in my travels I’ve had bizarre Crohn’s Disease obstruction complications from the high altitude of South Lake Tahoe, California, the almost perforating pressure inside a small airplane ride from Dothan, Alabama to Atlanta and in Portland I woke up with a Delayed Anaphylactic Reaction to my last infusion of Remicade in New Jersey, I always wound up seeking Dr. Chapman’s advice because no one else could scientifically explain what had happened to me.  I also frequently encountered rare complications from my Crohn’s Disease and unprecedented side effects from the Biologic Drugs and each time they too ultimately led me back to Dr. Chapman because he was the only GI doctor with a global track record of effectively identifying such problems and devising successful treatments.   Mind you, I would extensively research these Crohn’s Disease issues trying to seek a second such opinion but the road always led back to Dr. Chapman. **“Send lawyers, guns and money.  The shit has hit the fan.”  He’s THAT doctor.

Treating severe Crohn’s Disease is a number’s game

My 100% belief in Dr. Chapman is based on logic because obtaining an accurate diagnosis and successful treatment for a challenging and incurable disease like Crohn’s whose “medical textbook” treatments for the most severe of flare-ups often causes even worse side effects is akin to a “number’s game” and the New York City Gastroenterology (GI) Practice in which Dr. Chapman is a Founding Partner has likely treated more Inflammatory Bowel Disease (IBD) patients over the past 30-50 years than any other private GI medical practice in the world.   Moreover, Dr. Chapman’s GI medical practice is the type people turn to from all over the world when the complexities of their case befuddles their local then regional then national IBD experts.

Even when TV asked, I recommended Dr. Mark L. Chapman

I always thought Dr. Chapman resembled the great character actor Brian Dennehy and for some strange reason which has nothing to do with science, that brought me great comfort whenever I was hospitalized and saw him approach my room during morning Rounds.  We would joke about it but then in 2001 when my book, “Confessions of a Professional Hospital Patient,” landed me on NBC’s “Today Show,” MSNBC contacted me about producing a “patient segment” and they wanted to interview my Crohn’s Disease doctor.

Book July 9 2014

They said I could choose any doctor in the United States.  While it does suck to have Crohn’s Disease, it was an incredibly cool feeling the morning Dr. Chapman had to shut down his very busy New York City GI Practice so he could talk about treating ME for Crohn’s Disease to an MSNBC Reporter under the  lights with the pre-Interview makeup ritual which he seemed just a tad too at ease with.

That’s the superficial background on Dr. Mark L. Chapman’s credibility as a Crohn’s Disease and IBD expert. So when a few well-intentioned but rather intense people on a Crohn’s Disease Facebook Group once challenged me on some Postings I made about a Documentary my Charity is producing about Crohn’s and IBD, I thought the best and most efficient way to answer their “comments” was to go directly to the “Source.” That Source is Dr. Mark L. Chapman and he was kind enough to indulge me in my attempt to share his Crohn’s/IBD wisdom in healthcare social media.  To that end, below is Part One (1) and Part Two (2) of my September 10, 2013 Interview with New York City-based Gastroenterologist, Dr. Mark L. Chapman, arguably one of the world’s foremost authorities on Inflammatory Bowel Disease (“IBD) based on his 50+ years of practicing Gastroenterology in one of the world’s busiest and most well-respected GI medical practices.

Note:  This is NOT Medical Advice

Part 1 – In this portion of the Interview, Dr. Chapman provides succinct explanations for the differences between diagnoses of Crohn’s Disease, Colitis, Ulcerative Colitis and even “Crohn’s Colitis.”  Dr. Chapman also explains the serious symptoms associated with having “Severe Crohn’s Disease.”

Part 2 – In this portion of the Interview, Dr. Chapman opines on the role played by the somewhat controversial medical specialty of “Pain Management” insofar as treating Crohn’s Disease and Ulcerative Colitis.  Dr. Chapman also explains what many patients believe is a strange phenomenon regarding their disease flare-ups occurring at the same time of the year; year after year; inferring some type of environmental factors might be involved with triggering Crohn’s Disease flareups.

 

*“Willin’” – lyrics by Lowell George

**“Lawyers, Guns And Money” – lyrics by Warren Zevon

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Google Glass & Surgery, Medicine & Healthcare Innovation

I’ve heard many smart technologically-obsessed healthcare professionals speak at Conference after Conference about how Google Glass will revolutionize the practice of medicine for both patients and doctors but it’s hard to take them seriously when they look like Jacques Cousteau wearing some custom-made contraption just before submerging to explore the depths of some faraway ocean which I will never visit. However, my mind was recently changed at “Doctors 2.0 & You” in Paris, France, when Google Glass Surgeon and “Explorer,” Dr. Rafael Grossmann, was kind enough to share a few minutes with me and explain what every medical expert seems to be sure of, i.e., Google Glass could be a powerful tool for “disruptive innovation in healthcare.”

By the way, the term “Google Glass Explorer” is actually a “term of art” in that these people sign up with Google to purchase Google Glass and then share their stories from using it. I applaud Google for being such a “thick-skinned” corporation focused strictly on making the best product possible and I am eternally grateful to the Medical Google Glass Explorers who are bringing to fruition all that Dr. Grossmann alludes to in this 8-9 minute Interview. Enjoy.

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Crohn’s Disease Patient Reporter back from “Doctors 2.0 & You” in Paris, France

Healthcare “Serious Games” & “Simulation” at Doctors 2.0 & You 2014

Anderson Cooper, look out!

It’s no secret that I try to “cope” with the comprehensive and systemic life-changing effects of 30-years with Crohn’s Disease by advocating for raising global awareness about this auto-immune, chronic, “broad spectrum severity” and often misunderstood disease.  I even started a 501 (c) 3 Charitable Foundation called the “Crohn’s Disease Warrior Patrol” [CDWP] to organize and implement a Patient Care Strategy to help newly diagnosed patients based on the simple adage: Patients helping other Patients is often the Best Medicine.”  In that regard, things are going well with some major announcements soon to come including the CDWP finally commencing a patient-driven Documentary aimed at raising global awareness about the potential severity and pervasive effects of Crohn’s and Inflammatory Bowel Disease [IBD].  But as I do whatever I can, whenever I am physically able to do so, I often interact with ingenious, tireless, dedicated people using innovative and entrepreneurial applications of Digital Healthcare to fight their fight against a disease, a broken healthcare system or to improve the delivery of healthcare and make it accessible to more people.  Accordingly, I can’t help but use this Blog to “report” on these people and experiences so that others not so exposed to such extraordinary circumstances can learn about them and be similarly energized and motivated.  With this mindset, I recently traveled to the 4th edition of “Doctors 2.0 & You” held in Paris, France.  I was also invited to Doctors 2.0 & You to speak about Crohn’s Disease and the CDWP as they relate to the Quality of Patient Data available in Healthcare Social Media.

Healthcare “Serious Games” Designer Evert Hoogendoorn at Doctors 2.0 & You 2014

Doctors 2.0 & You 2014 | Interview with Tal Givoly, CEO, Medivizor

Trials & Tribulations of a traveling Healthcare Reporter with Crohn’s Disease

I’ve been to many of these seemingly “cutting-edge” Healthcare Conferences but sometimes they don’t focus enough on the “Patient Perspective” when they tackle the fast-changing landscape of digital healthcare.  That oversight seems patently counter-intuitive and thus negatively skews the quality of my experience and thus it’s always of concern to me prior to attending.  My biggest concern, however, is always my health, especially with respect to Doctors 2.0, because just the mere travel to Paris, France made me very nervous as it was only a few months after my Hip Replacement Surgery and not too distant from the intense chemotherapy I underwent to treat a still-undiagnosed severe breathing/lung problem likely caused by Biologic medications I took to keep my Crohn’s at bay.  Additionally, during my last cross-country excursion to the wonderful “Medicine X” at Stanford University in California, the air pressure inside the airplane caused my bowel to obstruct mid-flight such that the first few days of “Medx” (and the remaining portion of the flight!) were very painful for me.  Then, immediately after Medx when my Crohn’s had quieted down, I tried to take advantage of being out West and visited some friends in Lake Tahoe, CA.  But within a few hours at such a high altitude (i.e., 6,500 feet above sea level), my “insides” blew up and I looked like “The Michelin Man” and knew I had again obstructed and was forced to drive to lower ground to avoid a certain hospitalization. 

Doctors 2.0 & You 2014 | Interview with Stanley Lee of DXY.com in China

Since I was scheduled to fly back to New Jersey from Reno, Nevada, I drove there to a nice, secluded well-respected chain hotel near the airport but quickly learned the hard way that Reno, Nevada is 4,500 feet ABOVE sea level and as far as my bowels were concerned that meant I was still at the top of Mt. Kilimanjaro.  So, at 5 AM, back into the rental car I went, headed toward lower ground while struggling with intense abdominal pain, all the while praying my bowel wouldn’t perforate.  Somehow I safely made it to Sacramento, CA, which is only 13 feet above sea level (I was SO thankful for technology and my ability to quickly research the closest city to Reno, NV which is at or near seal level), and I soon began to feel some relief.  My trusted, longtime New York Gastroenterologist, Dr. Mark Chapman, then over the phone instructed me to stay there for AT LEAST five (5) more days as my body would require that much time to re-acclimate itself.  As always, he was correct as it took two (2) days for the associated joint pain, extreme fatigue and, at times, severe abdominal pain to subside to the point I was able to get out of bed with energy and three (3) more days for me to feel comfortable with the thought of flying again.   

“Connected Health” w/ Uwe DIEGEL, iHealth CEO @ Doctors 2.0 & You 2014

Being amongst “THE” Global Healthcare Leaders at Doctors 2.0 & You

Going to Doctors 2.0 & You also meant my first international travel with a very expensive video camera which I would be relying upon to capture over twenty-five (25) Interviews with fascinating Doctors 2.0 & You Speakers and Attendees.  I was concerned about damaging the camera during travel and/or somehow erasing whatever footage I was lucky enough to record.  Then there was the international electricity situation which I had to rely upon to charge the camera after Day One of the Conference.  Would it damage the camera?  Would it damage the footage?  Would I damage myself trying to figure it out?!  I researched all of these issues prior to the trip but as many of you can already guess, nothing went according to plan, BUT everything worked out.  My health even cooperated although upon my return to the United States I was EXHAUSTED.  As a result, I came back from Doctors 2.0 & You with even more respect for Anderson Cooper! 

More importantly, the people who organized Doctors 2.0 & You were extremely helpful and they did a tremendous job in designing the different “Sessions” and selecting the different Speakers and Panel Moderators.  I truly felt as if I were amongst “THE” Global Healthcare Leaders as I learned about healthcare terms and topics which had never been so thoroughly discussed before at prior Conferences.  These new technology-driven terms and topics included Connected Health, Quantified Self, Preventative Healthcare, a Utopian Data Feed, Personalized Medical Research, Serious Games, Simulation, Lifestyle Medicine and Medical Gamification. I tried to take advantage of the situation by interviewing as many of these Healthcare Innovators as was humanly (and electricity-wise) possible.  Thankfully, everyone I approached kindly consented to an interview and embedded in this Blog Post are five (5) such concise interviews which I think demonstrate everything that was absolutely wonderful about the 4th edition of Doctors 2.0 & You held in Paris, France on June 5-6, 2014. 

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The EVENT that is “Doctors 2.0 & You” in Paris, France

1-Doc 20 and you May 24 2014

 

To encourage attendance at a Healthcare Conference or Event, especially one which requires substantial travel and represents itself as “THE international event in Healthcare Social Media, Mobile Apps & Web 2.O,” the Organizer must ensure it: informs and inspires attendees; provides meaningful and reasonably intimate discussion forums pertaining to new and/or more effective, efficient healthcare delivery and access methods and modalities; and organically generates a comfortable networking environment and a cerebral spectacle which at the same time both validates one’s attendance and also challenges it.

Orchestrating this nuanced recipe requires successful experience in putting together similar healthcare conferences such that long-established and globally diverse contacts and leaders in fields such as medicine, patient advocacy, technology, pharmacology, business, healthcare social media and hospital administration are eager to participate and up-and-coming healthcare entrepreneurs can’t wait to attend and demonstrate their latest innovations.  Perhaps most importantly, all of the foregoing must make both a pragmatic and creative impression on everyone so they leave “Doctors 2.0 & You” THINKING PROACTIVELY about implementing in their own organizations and lives (and in the lives of people they care about) all they’ve seen and heard during their 2-day stint in Paris, France regarding their opportunities with these new ideas, methods and technology.

Why I’m Psyched for Doctors 2.0 & You 

In preparation for writing this Blog post and with the aforementioned high success threshold for Healthcare Conferences in mind, I reviewed the forward-looking Agenda for the two (2) days [i.e., June 5th and 6th] of “Doctors 2.0 & You” taking place in Paris, France AND I perused through the voluminous Bios supplied by the globally diverse and extraordinary lineup of Speakers and Moderators.  Suffice it to say, I am excited to be a part of “THE international event in Healthcare Social Media, Mobile Apps & Web 2.O” organized by Basil Strategies, a digital health consultancy.  Denise Silber is the President of Basil Strategies and 2014 is the 4th iteration of “Doctors 2.0 & You” during which the focus is on the evaluation of digital health.  (Note:  This Blog Entry is of my own volition and in no way was it recommended or required by Basil Strategies.  I simply want people to know about “Doctors 2.0 & You” and why my attendance and responsibilities there will likely prevent me from updating my Blog for a while.)  

What I will be doing at “Doctors 2.0 & You”

My participation in “Doctors 2.0 & You” is two-fold:  1. I am one (1) of the Presenters at the June 5th Session, “ePatients and the Quality of Data,” supplied by, for example, Crohn’s Disease patients in which I show how to maximize the quality, and thus value, of such patient-generated data simply by diversifying both the healthcare social media platforms I rely upon as sources and the methods I use in obtaining that data; and 2.  I will be conducting succinct Video Interviews with as many of the fascinating folks in attendance as possible during the two (2) days so that I can help document the “Event” and then share my experiences and what I’ve learned with everyone who was not able to attend this year’s “Doctors 2.0 & You.”     

The Theme of this year’s “Doctors 2.0 & You”

Day One (1) of the 4th edition of “Doctors 2.0 & You” focuses on the evaluation of digital health. Day Two (2) gets more specific and seeks to address “what we’ve learned and which new areas are most promising.”  In that regard, set forth below are the scheduled Session Topics for each day.

Day 1: – Three (3) Session options for each 60-90 Minute “Session”

SESSION ONE

 Start-up Pitches – This start-up contest brings together seven (7) companies from five (5) Countries, working on diverse aspects of digital health, quantified self, mobile apps, etc.

Evaluating “Connected Health” – “Quantified Self” devices and Apps

“Connected Health” is a healthcare delivery model that uses technology to provide healthcare remotely.  Its objective is to maximize healthcare resources and provide efficient and effective opportunities for consumer patients to engage with clinicians while at the same time better self-manage their care.

 “Quantified Self” is essentially telling stories with data.  It occurs when patients self-track everyday life activities in order to improve their quality of life.

With the advent of technology, the proliferation of smartphones and the increased usage of Wearable Measurable Devices, these are emerging healthcare fields which warrant attention now.  Therefore, various aspects of both will be discussed by users and manufacturers and the Session will also explore what works and what doesn’t – as seen by one of the largest  Connected Health objects manufacturer in the world.

ePatients & Quality of Data – How reliable is patient-generated data in social media?  IS it more reliable coming from individuals or from online disease-specific communities?  Is there a method to maximizing the quality, and thus value, of this patient-generated data? What about patient reviews of hospitals and healthcare professionals?

SESSION TWO

Informal “Unconference” Google Glass Interaction – Diverse Google Glass healthcare pioneers briefly share their experiences and then participants get to try out using Google Glass in an informal setting.

“Disrupting” the practice of medicine through Digital?  The term “disruption” within the healthcare continuum can take on different means depending upon who’s speaking and what they are doing digitally to help manage their healthcare.  The Speakers specifically address Lifestyle Medicine, Telemedicine and the resulting NEW more collaborative Patient-Physician relationship is explored.

Impact of Social Media by Patients for Patients – Several experts explain how they established disease-specific social media communities from scratch and how social media is being used to help with rare diseases.

SESSION THREE

“Gamification” and “Serious Games” – Insights into the Dutch experience and the applications of each and both in Healthcare, for both professionals and patients, young and oldThe Dutch speakers explore important insights into the many facets of the Serious Game and Gamification such as techniques in hospitals and those used in continuing education for physicians.

Advanced eMarketing Pharma Workshop – “The workshop will examine recent digital advances in the patient journey; the pros and cons of where we are now; together with what needs to happen next such that the future ambitions of all those involved [patients, providers, practitioners, Pharma, payors and caregivers] can be realized.”

Social Media Curation (or selection of health web resources) with one of the most influential online physicians and “medical futurists,” Dr. Berci Mesko.  Dr. Mesko teaches health web curation to a variety of audiences (e.g. medical students) and he will adapt his teachings to the enrolled attendees.

SESSION FOUR

New Data on Physician and Patient Engagement – Analysis of never-before presented proprietary data on web conversations and behavior in both healthcare professionals and patients around the world.

Evaluating Digital Pharma Case StudiesDiscussion of three (3) different facets of Pharma’s digital involvement: European perspective on remote detailing [i.e., electronic visits with Pharma sales reps]; continuing education; and use of major social media networks.

Educating physicians in online communities – Exploration of techniques which enable physicians to learn best in online communities such as: in a Pharma-supported training program in an Australian online physician community; in a Pharma-supported Russian “gamifying” online physician community; and in an online physician network in Switzerland which focuses on improving skin cancer detection with an electronic dermoscopy device.

SESSION FIVE

Spanish Meet-up “Unconference” Session – Spanish speakers and conference participants are invited to meet at the end of Day 1 to share perspectives on the different sessions they’ve attended.

Twitter Demo: New Launch Tool – The company behind “The Healthcare Hashtag Project,” Symplur, will demo a new and exciting social tool.

Personal Blogging: What works, what doesn’t?   Uniquely successful, candid and prolific UK blogger, Michael Seres, whose personal blog leading up to his recent rare small bowel transplant due to Severe Crohn’s Disease is now the OFFICIAL patent blog of the Intestinal Transplant Association for patients to read before such transplants to help prepare them for the plethora of personal, physical, emotional, psychological, familial, social and professional issues, shares his perspective on which platform, which subjects, how to market a blog, integration with mainstream media, etc.

Day 2

Caregiver Perspective – Meet the parents who developed SUBSTANTIAL social media awareness about the devastating effects of pediatric stroke after their son was so stricken. “Hear the power of their message.”

Understanding the seemingly never-ending NEW digital healthcare tools - The bounds of patient and physician imaginations are being stretched with new modalities driven by the surge in both the entrepreneurial spirit and technological capabilities.

Integration of Google Glass for Surgery? Pharma? Payers? – Experienced Google Glass Explorers share their learned perspectives and Pharma and Payer perspectives are also addressed.

From Data to BIG DATA: Good for Whom?  There’s more data and more mediums than ever before so how do we make use of it to improve healthcare?  “Are we making use of it to improve healthcare?”  Relevant analysis of the #Doctors20 Twitter hashtag is provided by Symplur using latest visualization techniques.

Can Social Media Stop Colon Cancer?  Spreading the word through social media campaigns about preventative steps to stop colon cancer has concrete results and numbers.

Physician engagement, Community and Pharma – Online physician engagement is taking different forms and including diverse online communities and tools, such as China’s Weibo, a hybrid of Twitter and Facebook which is the most popular site in China, including  partnerships with Pharma. Pharma’s relation to all of these global communities and tools are examined.

Quantifying “Quantified Self”! – An examination of both the rise of mobile apps and connected objects, such as different wearables, and a prognosis of the future regarding them.  The groundbreaking speakers will: compare and contrast the United States and European perspectives; examine the interest of Wellness programs for Pharma; and contrast the Spanish and international perspectives.

Digital Pharma, Hospitals, Patients and Patient Drug Research – The effect of, and opportunities provided by, the new digital age and fast-changing healthcare technologies is examined from the perspectives and experiences of the different healthcare stakeholders. Pharma expert provides his perspective from within the industry about this digital convergence.

Mobile Health Best Practices – With the proliferation of mobile health, there are many questions about its “Best Practices.”  An extraordinary panel of experts provides their thoughts, ideas and answers.

MOOC [Massive Open Online Course] on Mobile Health: does it work?  Currently, more people have access to a mobile phone than they do to clean drinking water. Simultaneously,  health systems around the world struggle to deliver cost-effective care.  But with the advent of FREE MOOCs open to anyone with an Internet connection, there lies great promise.  The developer of the successful MOOC, “Mobile Health without Borders,” in which 10,000 students from all over the world participated, reports on his experience.

Serious Games: What results? – The founder of Games for Health Europe shares specific examples and his visionary perspective on the emerging sector of “Serious Games” and simulation for health.

A Look into the Future with @Berci – One of Europe’s most connected physicians and the world’s most notable “medical futurist” provides a fascinating look at the future of digital health.

Adieu

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“Facial Difference” & “Facial Reconstruction” – An Extraordinary Patient Advocate

The plight of the extraordinary woman, Vanessa Carter, speaks for itself in this 15-minute Video Interview regarding her 10+ year Facial Difference/Reconstruction Journey in Johannesburg, South Africa resulting from a 2004 Car Accident and offers advice for other patients facing “Facial Difference” issues.

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PLEASE Support Crohn’s Disease by shopping at AmazonSmile

Amazon Saves

 

SMILE.AMAZON.COM

 

 Because when you shop at AmazonSmile, Amazon will donate 0.5% of the purchase price from your eligible AmazonSmile purchases to the “Crohn’s Disease Warrior Patrol.”  Thank you.

Just cut and paste THESE LINKS into your Web Browser and then you will be on AMAZON.com – except you will ALSO be participating in the AmazonSmile Program.

http://smile.amazon.com/ch/46-1971577 

http://goo.gl/0cswWx  (Short Link)

Why help the Crohn’s Disease Warrior Patrol? Because we are a 501 c 3 Non-Profit Charity dedicated to Raising Awareness about the Potential Severity and Pervasive Nature of Inflammatory Bowel Diseases (“IBD”).  Here are Four (4) examples of Social Media interactions I’ve had JUST this past week which justify the need for Charities like the Crohn’s Disease Warrior Patrol.

Is Crohn’s Disease a mental disease?  A young but inquisitive newly diagnosed Crohn’s Disease patient posed this question on a Facebook Group as if his doctor had told him HE WAS TO BLAME FOR HIS MEDICAL TROUBLES.  I felt terrible for this teenager because that is EXACTLY what I went through during my “diagnosis journey” when a Shrink I had been seeing at the age of 22 or so called me in the hospital after I had suffered an Intestinal Obstruction and was hospitalized for 10 days and placed on extremely powerful narcotic painkillers.  After confirming I was now feeling better, he said, “DO YOU SEE WHAT YOU DID TO YOURSELF NOW?”  I pulled the phone out of the wall and once I was healthy I went back to the Shrink and got ALL OF MY MONEY back under the rationale that he was not qualified to treat a patient suffering from Crohn’s Disease.  It’s been almost 30 years, 20 surgeries and 200 hospitalizations later with my case of Severe Crohn’s Disease and I can attest to the fact that it can be a severely painful autoimmune disease which can also be disabling and so pervasive in one’s life that it has mental, emotional, financial, social, familial and professional effects. Almost forgot, it is also INCURABLE.  Accordingly,  Crohn’s Disease CAN cause a variety of mental disorders because coping with it proves to be isolating, lonely and too often misunderstood even by those who love you most.  For example, this is how I lost a close friendship shortly after being diagnosed just past my college days:   “I can’t believe you can’t come to my wedding on Sunday; we were out partying LAST NIGHT and you looked FINE, now you are in the hospital?  I don’t believe it.”  When that disbelief or “but you look fine” repeatedly occurs in different forms, in different forums, over and over again, despite you crying in pain and being left destitute from medical bills, it can make you go F’N CRAZY. 

Overheard conversation from one girl to another in a high school bathroom by a Crohn’s Disease patient named “Jane” as she was busy attending to her urgent bodily functions in a stall in the same bathroom:  “Don’t use that stall after ‘Jane’ because she has ‘that’ disease and it is disgusting.”  I recently came upon this also in a Facebook Group and it broke my heart but as I wrote the girl who shared this incident with us, these types of stories quickly reveal the character of the ignorant people who don’t understand that in Life, no-one comes away unscathed by disease and adversity.  To have Crohn’s Disease in high school is certainly challenging but it does make the person wise beyond their years and they learn to use their Crohn’s almost like a “BS Detector” when they encounter male and female relationship issues as they get older.  I’m lucky like that because I have a core group of friendships most of which are 30 to 40+ years in the making.  “Lucky” and “Crohn’s Disease” in the same sentence seems like an oxymoron but that’s what these horrific “bathroom stories” teach you when you are fortunate enough to find friends like mine.  But ignorance is rampant in the Crohn’s Disease and IBD worlds as even in dating, I have heard stories from beautiful, smart and funny women about men who were turned off by their Crohn’s Disease because they thought it was CONTAGIOUS.  It most certainly is not but it shocks me how such a potentially SEVERE AUTO-IMMUNE DISEASE can be SO MISUNDERSTOOD.  In any event, Crohn’s Disease patients spend their lives turning lemons into lemonade, physically and mentally.

Television’s Dr. Oz did a rather in-depth segment on his TV Show and emphatically concluded “Irritable Bowel Syndrome” (“IBS”) is caused by STRESS when any science-based physician or institution like THE MAYO CLINIC will beg to differ.  Stress can make ANY medical condition worse and it can also trigger a condition which a person is scientifically vulnerable to but STRESS DOES NOT CAUSE IBS; it is a REAL SCIENTIFIC MEDICAL CONDITION.   For those who are wondering, the difference between IBS and “Inflammatory Bowel Disease” or “IBD” is that IBD involves INFLAMMATION and is an INCURABLE AUTO-IMMUNE DISEASE such as Crohn’s and Ulcerative Colitis whose treatment medications counter-intuitively come with side effects as challenging as the IBD itself.  I am not aware of the scientific numbers but it may be reasonable to assume that some or many people initially diagnosed with IBS go on to getting IBD simply because it can be a natural progression and/or the more serious IBD was misdiagnosed initially.  That said, people suffering from IBS nevertheless can suffer GREATLY.  But whether it is IBS or IBD, it doesn’t help the global understanding of these VERY PAINFUL conditions/diseases when a popular Television Doctor trivializes constant diarrhea, painful constipation and paralyzing, agonizing distention.  It is bad enough when a patient’s own doctor tells him or her that THEY ARE CAUSING THEIR IBS or IBD that syndicated broadcasting of such a falsehood only makes patient mental coping problems more prevalent.  Thankfully, however, there are WONDERFULLY KNOWLEDGEABLE and COMPASSIONATE Gastrointestinal DOCTORS who make Dr. Oz look like a shyster driven by a fame agenda.

A 51-year old woman I know who’s suffered from Crohn’s Disease for approximately 35 years (i.e., “Sandra”) was recently hospitalized via the emergency room near her home in Biloxi, Mississippi.  Her condition was so serious that she was transferred to a better-suited hospital in New Orleans.  She apparently had a few VERY PAINFUL “strictures” around her J-pouch and required surgery ASAP to fix them.  I met this lovely woman on-line in some IBD-related Facebook Group a few years ago when she was trying to help other patients with answers to their Crohn’s questions based on her vast experience.  But the more I got to know her, I learned that she had no family and she lost her home and belongings (including all of her medical records) in 2005’s Hurricane Katrina which virtually wiped Biloxi, MS off the map.  Now disabled, this woman has thus far been unable to obtain Social Security Disability (“SSD”) even though she worked and paid into it for over 20 years because she cannot afford to go for the doctor appointments and diagnostic tests needed to medically substantiate her current SSD application.  So when I heard she was all alone in a New Orleans hospital facing surgery, I turned to the power of Social Media and with the help of her friend Kathleen Fox Polizzi within a FEW HOURS a tremendously compassionate volunteer (i.e., Robin Kingham) with the Louisiana Chapter of the Crohn’s and Colitis Foundation of America (“CCFA”) had visited her twice and people from around THE WORLD were sending her “good luck” texts and whatnot.  Then I tracked down Robin Kingham and asked her if she would be so kind as to drive Sandra from New Orleans back to her home in Biloxi, Mississippi, when she was discharged from the New Orleans hospital?  Robin beat me to the punch and explained she already planned on doing that 2-3 hour drive as a surprise to Sandra.

So, with the help of people like Kathleen Fox Polizzi and Robin Kingham, the Crohn’s Disease Warrior Patrol is making progress.  To sign up to be a Warrior  or a “Patient-in-Need,” please visit our website.

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Contrasting Neurologists – The Ridiculous to the Sublime

Neurology April 13 2014

When stricken with a challenging medical condition, most people seeking the opinion of a referred-to medical specialist, such as a Neurologist, assume each will reach the same conclusions, conduct the same exams, and apply the same thoroughness and attention to detail in treating the patient with dignity, compassion and respect. Au contraire, as my recent experience proves with respect to Consultations with Two (2) Neurologists my Mom and I recently interacted with to treat my Mom’s condition of “Left Homonymous Hermianopsia” (“LHH”) which was correctly diagnosed by a Neuro-Optometrist while my 78-year-old Mom recuperated in a Rehabilitation Facility (“Facility”) from Double Knee Replacement Surgery.  In laymen terms, LHH is the loss of half of the field of vision on the same side in both eyes.  Therefore, in both of my Mom’s eyes, the left side is seriously compromised and this causes “blind spots” and/or she doesn’t always see or recognize things which quickly approach her like a close relative coming over to kiss her hello.  Apparently, it occurs as a result of a stroke or a traumatic brain injury from a fall and it also includes tormenting, but seemingly very specific, cognitive difficulties with respect to the judgment of “spatial” relationships.  As a result, my Mom’s “depth perception” is not calibrated correctly and this affects her ability to perform many daily tasks such as driving, cooking (and in her day she was a GREAT Cook!!) and even walking 10-feet from the car to a favorite local store I always drive her to in order to complete simple household errands.

The day-to-day effects of “Left Homonymous Hermianopsia”

I live with my Mom so I have known for 2 years or so that something was “off” about her as her depth perception at times seemed odd and she suffered occasional “spatial incidents.”  Those spatial incidents included suddenly falling down when the gradient of a concrete walkway increased by only an inch, going to the car’s rear door when I would pick up her at the supermarket when she should have opened the front passenger door, and being unable to sign her name on, or often even near, a designated line.  Then there is the short-term memory loss which starts out as forgetting where keys are left and soon includes the inability to work the TV Remote Control.  Mind you, my Mom has remained competent throughout this time and I still enjoy talking to her more than anyone else on the planet.  But, at unpredictable times, it has been frustrating to have an engaging and profound conversation with her about politics one minute, only to witness her complain the next minute about a beautiful functioning Dresser being broken because she was unable to “slide” a dresser drawer into it perpendicularly instead of horizontally.   Accordingly, if you spent 10 minutes with my Mom, you’d think she is a firecracker for her age with a quick wit to match but any additional time with her would surely reveal this tantalizing problem with “spatial relativity.”

 Diagnosing “Left Homonymous Hermianopsia” in my Mom

All along I thought her depth perception problems logically had to be attributed to her vision so during her recent knee surgery and subsequent physical rehabilitation when several nurses at the hospital and then at the Facility asked me if I knew my Mom had vision problems, I asked the Facility’s eye specialist to exam her.  Apparently, within only a few minutes, he was able to diagnose a rather large “Cut” in her Left Field of Vision and suggested a Brain MRI to confirm his suspicion of LHH based upon additional anecdotal information he had acquired from me, other members of my family and the staff at the Facility.  I then contacted my Mom’s long-time Ophthalmologist to obtain all of her medical records and he told me we needed to see a Neuro-Optometrist to confirm a diagnosis such as LHH.  Coincidentally, the Facility’s eye doctor was also a Neuro-Optometrist.  Therefore, the family treatment plan was to compare the new Brain MRI to another from approximately a year ago (as we tried to look into this depth perception problem then but the MRI was basically normal “for her age”) at this Neuro-Optometrist’s  office shortly after her discharge from the Facility.  We did all that and the diagnosis was confirmed by this Neuro-Optometrist with his adamant referral to a neurologist as to “Why” this happened and “How” it could be treated.  We never witnessed my Mom having a Stroke, but it is possible she had one.  We had seen or been around her when she fell, but no particular fall seemed worthy of an emergency room visit, which we were told was generally the benchmark for such a fall to cause LHH.  We left this Neuro-Optometrist’s office feeling good about at least having a Treatment Plan to help my Mom and consulting with a Neurologist was obviously the focus of that Plan. 

The Comfort of a Formal Diagnosis

As explained in previous Blog Posts of mine, “Diagnosis Journeys” can be arduous, expensive and emotionally challenging.  Knowing this and how my Mom must have been struggling the past two (2) years or so, it was comforting to have a formal diagnosis and then even my Mom came on board and began admitting her silent struggles whereas up until this point she was reluctant to seek a diagnosis for fear of something much worse being discovered.  More specifically, she had been married to my Dad for over Fifty (50) years and he passed away in 2008 from a confluence of serious heartbreaking medical conditions which culminated in Sleep Apnea-induced Dementia such that the combination of heart and lung problems from two (2) bouts with Lymphoma, Chemotherapy and Radiation had done such damage that the Dementia destroyed his quality of life.  His systemic physical and psychological pain was simply too much for any man to withstand especially when he was unable to love his healthy loving wife and best friend of over 60 years in a manner consistent with the way he felt about her.  My Dad was one tough customer and I thank him for passing onto me his resiliency trait but there was no consolation for my Mom and that’s why she was reluctant to learn what “Father Time” had possibly done to her mind and/or body.

 Looking for the “Right” Neurologist

While LHH sounds rather tame in terms of medical conditions to live with, I can tell you from living with my Mom that someone must be around her during most of her waking hours to make sure her condition doesn’t cause unexpected physical harm to her.  This may not be true with other LHH patients but when she’s 100% healthy, I like to refer to my Mom as being “frequently wrong, but never in doubt” and it is this determination and confidence which worries us about leaving her alone.  It is also one of the many reasons why I love her so much.  So, we began looking for the “right” Neurologist for her.  But how does one do that these days with so much more additional information available via the Internet such that one need not necessarily rely upon Word-of-Mouth recommendations?  Moreover, the Neuro-Optometrist who correctly diagnosed my Mom had suggested a few neurologists in his absolutely thorough treatment of her. Those things being said and also living in Northern New Jersey with relatively easy access to New York City doctors, there is always the temptation to find “the best” and those doctors are usually located in major cities such as New York City.

Having much experience myself with a variety of serious medical problems for the past 30 years due to my battles with the chronic, autoimmune and incurable Severe Crohn’s Disease, I decided to contact one of the smartest, most professional, kind and compassionate doctors I knew and asked her whom she would send her mom to if she were stricken with this condition.  Thanks to this pulmonologist, we quickly got the name and contact information of that neurologist and took the soonest available appointment which was approximately 3-4 weeks away.  For the sake of making this Blog Post about the underlying problem and not about a specific neurologist, let’s refer to this female doctor as “Neurologist #2.”  But the day-to-day stress of managing the LHH was intense and taking a toll on everyone so other family members had similarly qualified a few different neurologists located in the Metropolitan New York/New Jersey area so I began looking them up on the different Physician Rating websites.

We figured my Mom would need two (2) neurological opinions anyway so it made sense to pursue a second neurologist.  Sure enough, one of the doctors recommended by a family member had GREAT ratings on these Physician Rating websites and they were also similar to the ratings of Neurologist #2 who we were seeing in a few weeks.  That seemed to signify the end of our neurologist search so we called this other neurologist (“Neurologist #1”) and he had an appointment available only a few days away.  We took that appointment figuring it would at least provide some psychological comfort and we would learn more about my Mom’s condition prior to our appointment with Neurologist # 2 whom we figured would become her Treating Neurologist based upon her affiliation with a very prestigious institution and by virtue of the manner in which we were referred to her (that is, by my excellent and compassionate pulmonologist).

The Appalling Neurologist #1 Experience Begins

 Excited to get some answers, we got to the doctor’s offices early.  They say you don’t get a second chance to make a first impression and he failed that test when my Mom, still recovering from her Double Knee Replacement Surgery and relying on a cane or a wheelchair, when necessary, had to navigate a STEEP uphill parking lot with just her cane and leaning on my shoulder because it had no close handicapped parking and no accommodating wheelchair access was available, as it usually was at the doctors’ offices my Mom frequented.  Please also note that I am slowly recovering from Hip Replacement Surgery so my Mom’s reliance on me to traverse this “hill” was almost too much for ME to bear. I thought this steep uphill patient parking lot was odd especially since as a highly touted neurologist, much of his patient population had to be older people or disabled patients who desperately needed these physical accommodations.  However, not wanting to “judge a book by its cover,” we proceeded into his “office” which was a cheaply converted house with MINIMAL patient amenities.  The walls were old, the floors seemed ignored for years and the doctor’s office was more appropriate for a civil employee at a local, quiet municipality.  But, the man was highly praised on-line as a neurologist so I kept encouraging my Mom to be positive.

Neurologist #1 – “So why are you here?”

After exchanging pleasantries sitting across from the doctor in his medical office/exam room yet devoid of any medical equipment such as an x-ray illuminator, impressive medical textbooks or even a patient exam table, I politely explained my Mom’s diagnosis of LHH and simultaneously handed the doctor the CD results of the two (2) aforementioned MRIs as well as their respective written ONE (1) PAGE diagnosis reports along with the detailed written analysis and diagnosis from the Neuro-Optometrist.  After giving this CRUCIAL information no more than a cursory “acceptance” acknowledgement, the doctor placed the information “package” on his desk as if I had given him yesterday’s newspaper and looked at my Mom and I and said something substantially to the effect of: “So why are you here?”

I was surprised by his question given that we were explicitly told to see a neurologist and I was also annoyed at his dismissive attitude which indicated we were somehow bothering him by our mere presence in his office/exam room.  After all, I thought, he accepted the appointment knowing my Mom’s diagnosis and I assume he was going to accept payment from Medicare for the services rendered during the appointment so you’d think he’d at least exert some effort to earn his money?  My skepticism aside, I could also feel the “hope” slowly leak from my Mom’s face as if this extremely cold interaction was indicative of the beginning of the end of her active life and charming personality as she knew it to be but I ignored my instinct to physically “school” this doctor on the proper way to treat patients and I quickly and succinctly explained the essence of the information I had given him.  He listened but each time my Mom interrupted me to elaborate on her own story to better demonstrate her symptoms, he literally gave her “the look” as if to say, “It’s bad enough I have to deal with your son talking at me, lady [a/k/a “his PATIENT”], so why don’t you keep your mouth shut so we all can get out of here sooner?”

Neurologist #1 – Treatment Plan: “Same Time, Next Year”

When I was done speaking, he told us that all we could do was schedule an MRI in a YEAR and then come back to see him so he can ascertain whether or not the LHH had gotten worse.  He did not say what he would do if that happened; he just flippantly suggested we do this despite my Mom and I telling him about her day-to-day challenges with this condition and how a doctor specializing in diagnosing this condition had been adamant that we see a neurologist to understand why the condition occurred and how it could best be treated to at least improve my Mom’s quality of life.  That’s when I started feeling more than a little patronized by this doctor who should have retired to play golf if he had no interest in HELPING or LISTENING TO HIS PATIENTS.  I remarked that I found it strange he took our appointment knowing my Mom had LHH but asked us why we were there and also told us the ONLY TREATMENT was to have annual Brain MRIs and then pay to see him again for what amounted to, no medical advice.  I was thinking I could have had the same experience visiting my friend Eric, and he’s an attorney, or my friend Rich, who runs an Office Painting business.  Call me crazy, but such a qualified referral from a Neuro-Optometrist who had been DEAD-ON in diagnosing my Mom with a very complicated condition warranted a more substantial Treatment Plan from a neurologist than the mere scheduling of an annual encore performance of NOTHING.

Sensing my FURY with his complete CONDESCENDING BULLSHIT, Neurologist #1 reluctantly started explaining the science behind LHH and that my Mom must have had a Stroke in order to be in this condition.  We explained that we witnessed no such event nor did she fall so severely so as to cause such a traumatic brain injury.  Without inquiring into my Mom’s lifestyle or history of falls, and thus based on nothing but a coin flip in his mind, he maintained she “had a stroke.”  I asked if there were any additional diagnostic tests to prove that, and more importantly, I respectfully inquired if there were any tests or medications to help prevent her from having another stroke, if she had one in the first place?  With not one muscle changing in his face, he just said, “No.”  I responded, “Is there ANYTHING to be done to determine her present state of mind?”  He looked at me as if I had just ruined his tee time and went on to administer the most unscientific spur-of-the-moment Dementia Test I had ever heard of or witnessed and I was somewhat familiar with them from my days of practicing law and representing “alleged mentally incompetents.”

Neurologist #1 – Dementia or “Left Homonymous Hermianopsia?” – Flip a F’n Coin

Again, the doctor did not move from behind his desk nor did he refer to any paperwork when he started asking my Mom fairly simply questions to test her memory retention skills.  He asked her to remember 3 simple words in a specific order and continued asking her “time and place” questions.  She did well with her answers and she also was able to recall the three (3) words without any problems but then he drew a simple rectangle on a piece of paper and placed it in front of her and asked her to replicate it.  Since my Mom was an artist at one point in her life and could paint beautiful landscapes and portraits from scratch, in my mind, this was a significant test.  She drew a 1-2 inch straight line and kept going over it with the pen thinking she was creating a rectangle when all she was doing was drawing a very BOLD 1-2 inch line.  Based on our detailed conversations with the Neuro-Optometrist who diagnosed her with LHH,  this was evidence of how severe her LHH problem was with respect to spatial issues such as drawing a rectangle and making sure the overall shape was correct and the opposing lines were generally parallel with one another.  Despite my Mom’s obvious poor performance on this spatial part of the spontaneous test, the doctor was un-phased and then said something to the effect of, “Okay, so we are done here, right? You’ll contact my office in a year or so and we’ll do another MRI of your Brain.”  He then began to get up from his chair.

THE WORST DOCTOR CONSULTATION I HAD SEEN IN 30 YEARS

My Mom thought she had just witnessed the movie trailers with a film feature sure to follow but the doctor got up to leave giving off the impression of finality similar to end credits as they begin to roll down the screen.  She started to verbalize more specific examples of her experiences with LHH and he turned around and looked at her like he had heard enough as if she had been a loser on a TV Game Show who wouldn’t leave the contestant’s chair when asked to do so.  For a few seconds, I felt very sad as I could feel my Mom’s world coming apart at the seams but my outrage took over at this doctor’s disgusting behavior toward his patient, my Mom, and how that repulsive behavior could unfairly affect my Mom even though all she had really witnessed and experienced was THE WORST DOCTOR CONSULTATION I HAD SEEN IN 30 YEARS with my chronic, incurable and severe disease which has caused me twenty-plus (20+) surgeries and two hundred (200) or so hospitalizations.

As the doctor left the room and my Mom and I were left to pick up the medical information we had brought to help facilitate the doctor’s understanding of my Mom’s situation, I quickly changed my focus to my Mom and concentrated on making sure she forgot about this douchebag as soon as possible knowing there was nothing I could do to make this doctor act like a professional physician.  I apologize for my choice of spicy language but there are no other words to accurately convey what occurred with Neurologist #1 or to describe him in his professional capacity.  We left the office but as I carefully traversed down the parking lot hill with my recently replaced left hip to pick my Mom up at the top, near the entrance to the office, I was getting angry that this doctor was going to be paid by Medicare for what had just taken place when he should have been reported to the New Jersey State Board of Medical Examiners for both his inept Treatment Plan and the condescending manner in which he had treated his patient.

After helping my Mom get back safely into our car, I went back into the converted home office and saw Neurologist #1, already dressed to leave, joking around behind the counter with his Office Manager. They looked at me as if I had come back to find lost eyeglasses and I said firmly, “My Mom’s diagnosis is, what it is, but all you did in that excuse for a Consultation was remove all Hope my Mom and I had built up in anticipation of this meeting with you.  Your Treatment Plan makes no sense and if someone treated your mother in the same patronizing manner as you treated mine, you’d be incensed.  How you received positive reviews on Physician Rating websites is beyond me.”  I then turned around and returned to the car and comforted my Mom.   Thankfully my Mom is perceptive enough to realize what she had just experienced so we proceeded to “turn the page” and waited for her appointment with Neurologist #2.

Neurologist #2 – Finally, a THOROUGH and Compassionate Professional

While we were not set to meet with Neurologist #2 for 2-3 weeks, when I made the appointment I had asked the Office Manager to call us for an earlier appointment if another patient cancelled.  Almost like a sign from above, we received that phone call 3 days after the above “Consultation” with Neurologist #1 and were scheduled to meet with Neurologist #2 the next day, Saturday.  Wait, a doctor who works on Saturdays?  As I said above, you don’t get a second chance at making a first impression but this time that first impression was of a dedicated and compassionate doctor who tried to be available when she was most needed by her patients.  I again gathered together all of the diagnostic information referred to above and brought it to the Consultation.  We parked in a handicapped parking spot (my Mom has a Handicapped Placard) and since the entrance to the doctor’s office was a bit of a walk, we easily got a wheelchair for my Mom and wheeled her to the office via the wheelchair ramp.  For this Consultation, I did not need a Walking Stick just to get out of the parking lot.

Neurologist #2 to Neurologist #1  – “From the Sublime to the Ridiculous.”

After filling out various medical and insurance forms while this doctor reviewed the same exact diagnostic information I had given to Neurologist #1 only to watch him cast it aside to ask us what we were doing at his office, Neurologist #2 gently came into the Exam Room and introduced herself to my Mom.  She immediately demonstrated her specific knowledge of my Mom’s condition and then sat down and listened to me, my sister and my Mom succinctly describe her LHH condition.  She asked questions to verify different facts and then she proceeded to conduct a thorough “sensory” exam of my Mom by literally evaluating her nerves’ reactions from head to toe.  Whenever she came across what appeared to be an abnormal reaction, she noted it in my Mom’s chart but then a few minutes later retested that part of her body to make sure of any abnormalities.  Neurologist #2 was gentle with my Mom in both the way she touched and listened to her.  Compared to my Mom’s experience with Neurologist #1, this experience was sublime and the other ridiculous.  Now I know the true meaning of the phrase: “From the sublime to the ridiculous.”

Neurologist #2 – The Exam AND Consultation

At the appropriate time, the doctor was kind enough to entertain questions from each of us and her answers revealed her intentions to perform a COMPLETE WORKUP of my Mom to determine the cause of the LHH and simultaneously start Occupational Therapy to help my Mom combat the day-to-day challenges caused by the condition just in case that is her only recourse or a part of the ultimate Treatment Plan.  In response to our concerns about the culprit being a Stroke and us wanting to prevent future such occurrences since we never witnessed it, the doctor immediately, politely and compassionately “ordered” my Mom to take a Baby Aspirin every day.   She then explained the various diagnostic tests she wanted my Mom to have and asked me to make sure she hadn’t already gone for these tests within the past year since Medicare would not pay for the test under those circumstances.  Those tests are an Echocardiogram and a “Vasc Carotid Duplex, Full.”  The doctor also tested my Mom’s blood for various minerals, B12 and B6 and made sure we were going for a more comprehensive blood test regarding her cholesterol and sugars for which she would have to fast.  My Mom’s Internist had prescribed such a blood test and I had indicated we intended to go for it on Monday.

Immediate Post-Exam Follow-Up with Neurologist #2 / #1 – Nothing

We must have spent more than 30 minutes conferring with Neurologist #2 then left with a laundry list of tests, procedures and occupational therapy prescriptions to follow-up on whereas the Consultation with Neurologist #1 consisted of a 15-minute conversation and the only follow-up required was calling back in a year to schedule another Brain MRI.  I almost forgot, we also left the office of Neurologist #2 with HOPE and SMILES.  More specifically, as we checked out of the office of Neurologist #2, I stopped by the Office Manager’s desk and she handed me several documents.  One was the prescription for Occupational Therapy and another was a 4-page “Clinical Summary” of my Mom’s exam which specifically enumerated both the “Health Issues Reviewed” during the Exam and the currently proposed “Treatment Plan” which included the list of the aforementioned prescribed tests and activities.  When we left the office of Neurologist #1, all we had to do was remember to contact him IN A YEAR TO SCHEDULE ANOTHER BRAIN MRI.  He did not prescribe Baby Aspirin to help prevent another Stroke, if, in fact, one had occurred; nor did he express any interest in examining my Mom’s nerves, heart or Carotid Artery.  Neurologist #2 also scheduled a follow-up exam for approximately one (1) month later at which time she planned to conduct the Cognitive Test which, according to the Office Manager, is standardized and based on written questions and observations used by the doctor each time she conducts such an evaluation.  Neurologist #1 “made up” his Cognitive Test of my Mom on the spot.

Conclusions

Some Doctors Suck & Some Doctors Don’t Care – just like in other Professions

Just like in ANY profession, some doctors are bad at their job and some simply don’t care.  For traditional reasons and because of rote human nature, we don’t expect this in the practice of medicine but as the above proves, it does happen.  Healthy people having to suddenly address a medical problem after many years having never gone to a doctor, or having never been hospitalized, typically don’t ever expect doctors to be lacking in humanity or humility, so for THEM, Physician Rating website grades provide valuable information from which to make choices of physicians.  I pity them because as the above proves, GREAT physician website grades do not make an even good physician.

Word-of-Mouth Physician Referrals are more Reliable that Website Ratings

The fact that Neurologist #1 received GREAT reviews on several Physician Rating websites is exactly why I think such Doctor Rating websites are unreliable.  There are too many unknown variables to render such Doctor Ratings accurate.  Who knows, Neurologist #1 may have received terrible personal news immediately prior to my Mom and I walking into his office and/or he simply didn’t like me?  Maybe Neurologist #1 had phony patients provide the aforementioned Ratings?  I don’t know the answer to those questions but I do know that in my experience as somewhat of a “professional patient,” rating doctors on an objective scale is like devising a rating scale for male or female “attractiveness” or “good-looking-ness.”  Different characteristics carry different weight to different patients just like a woman who is a “9” to me might be a “4” to someone else, and vice versa.  Accordingly, please be wary of Physician Rating websites and try to use social media to network for “Word-of-Mouth” physician referrals because the elaboration of subjective discourse regarding a physician-patient “transaction” will enable you to determine whether or not that physician is appropriate for what you seek and/or need.

Be mindful of the Psychological effects of exposing Patients to Apathetic Doctors

As for the “extraordinary” work performed by Neurologist #2, it is actually commonplace amongst the many WONDERFUL Physicians who listen to their patients and actually care about them. It only seems “extraordinary” when compared to the listless, arrogant, patronizing and condescending work ethic of Neurologist #1.  In that regard, please always keep in mind the psychological effects of exposure to apathetic professionals like Neurologist #1. It’s one thing to remain unemotional to ensure that a patient receives the best possible care but it is an entirely different matter when a neurologist is so indifferent he forgets to “prescribe” something as simple as Baby Aspirins when a patient with LHH presents with the propensity to have Strokes.

Pay attention to the “Little Things”

Please also pay attention to the little things like Neurologist #2 seeing patients on Saturdays or Neurologist #1 not caring about his patients’ safety by building a parking lot more suitable to mountain climbers than to patients with Double Knee or Left Hip Replacements.  (By the way, it is my understanding Neurologist #2 routinely sees patients two (2) Saturdays every month and has been doing that for some time.)

The “right” Physician for a Patient isn’t necessarily the “best” Physician

Finally, the “right” physician for a patient is not always the “best” because in my Mom’s case, for example, I know she wants a doctor who will listen to her and who will be compassionate with her.  For whatever reason, she also prefers a female because at her stage in life she thinks it is more probable she will obtain such care from a female physician.  I know my Mom’s hypothesis is WRONG and that she can receive gentle, compassionate care from a male physician but this is what makes her comfortable and provides her with the “hope” she now needs to battle a very complicated medical condition.

I trust Names are not necessary in this Blog Post to appreciate the learning points of my recent experience with these Neurologists

This was an emotional Blog Post for me to write and I did not feel well while writing it but I think it is important to share what can be learned by comparing and contrasting my REAL experiences with these two (2) VERY DIFFERENT Neurologists.  While I have not named Neurologist #1 in this Blog Post, I usually believe in comic Jay Mohr’s edict to “put your name on it” whenever making complaints but I don’t want to compromise my Mom’s care with Neurologist #2 by purposely “outing” Neurologist #1 when I could just as easily communicate the learning points from these experiences without divulging names.  I hope readers can understand that.

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Adjusting to Ostomy through physicality of playing Hockey

1-Berlcak and Weiss 1

 

April 4, 2014

I recently had the privilege to conduct a Video Interview with the soon-to-be-announced winner of the 2014 “IBD Heroes Award,” Mr. Andrew Berlack.  This Award is being funded by my Non-Profit Foundation, “Crohn’s Disease Warrior Patrol,” [The "CDWP"] because we want to highlight POSITIVE stories about people with Crohn’s, Colitis and any other Inflammatory Bowel Disease to provide much-needed INSPIRATION living with IBD requires on a daily, hourly and often minute-by-minute basis.  There will be more 2014 IBD Heroes because we want it to be dynamic so that when we find a great story we can share it and showcase that “IBD Hero.”  It looks like the only limitation will be my ability to edit and post the video interviews with the winners!!!!   

I don’t want to spoil the formal announcement of Andrew Berlack’s remarkable story but I think its message is SO INSPIRATIONAL on several different levels that I couldn’t resist providing this “teaser”:

Andrew Berlack WAS a Federal Law Enforcement Officer (he carried a weapon, etc. and was a real Police Officer) and then he got Crohn’s Disease and ultimately had his entire rectum removed and had an Ostomy put in its place.  When he was still working as a Police Officer, but suffering terribly from the unpredictable hospitalizations and bouts with Crohn’s Disease, his fellow police -men and –women donated to him some of their vacation days to cover the growing amount of his sick days to stave off their accumulation from disqualifying him from being a Cop – that’s how special this guy is.  And it gets better …

He was nevertheless forced into filing for Federal Disability and spent the next 4-5 years learning to live with his ostomy before he considered his next step in life.  Most people do this by experimenting with going to different public places with friends or by eating diverse foods.  Not Andrew.  He chose to assimilate to the world of being an Ostomate by PLAYING ICE HOCKEY.  It turns out the “physicality” of hockey tested his ostomy to the extreme and those positive experiences of once again “feeling normal” gave him enough confidence to move forward with his Life Plan (he also got MARRIED during this time period) such that he began working a few hours a week and kept a fire burning for one day returning full-time to Law Enforcement.

Being “consistent” and holding down a physically-demanding job with the ostomy took a few years for Andrew to adjust to but those worries paled in comparison to those which required him to sharpen the tough and reactionary mindset required by any law enforcement position.  When I interviewed him, I got the feeling his ubiquitous visualization of 100% positive ostomy outcomes on the physically-demanding hockey rink helped him overcome any such worries but there were practical obstacles which couldn’t be scaled with the help of a slap-shot.  The most significant of which involved the weight and snug fit of the typical uniform belt worn by law enforcement officers as it conflicted with the space needed for his ostomy to lie still and uninterrupted. But one night, completely by chance, Andrew saw a policeman on television wearing all his necessary gear on his suspenders.  It took me a while to grasp the visual he was describing but suffice it to say, horizontal was no good and vertical was life-altering for Andrew as it fulfilled whatever gear requirements he had to carry while preserving the necessary space for his ostomy so as to avoid any messy accidents.

The fire burning inside him was satiated at first by working a few hours each week in Retail Shopping Centers in “Loss Prevention” policing shoplifters.  But once he learned of the different way to “wear” his belt,  he was transformed back to a life of potential normalcy.  In that regard, Andrew most recently got a job as an “Armed Protective Agent” for a private security company where his various law enforcement assignments include protecting government witnesses and the like.  He is not “back” on the police force YET but he is back working and helping enforce the law and living out his dream of protecting people which he thought was lost due to his Crohn’s Disease and the ostomy.

Using our Minds to Teach our Bodies

I am presently organizing some National Hockey League (NHL) surprises for Andrew as his “IBD Hero” Award and you will hopefully hear about it through various promotional efforts but I found the power of his mindset as strong as any medication I have ever taken in my 30 years with Crohn’s Disease.  I was also amazed he got married during the middle of his acclimation to the ostomy and while being technically “Disabled.” That proves there’s hope for fools like me who stop dating when “the shit hits the fan” for fear of harming what otherwise might be “the relationship” I’ve been seeking my entire life.  That got me to thinking how Andrew’s story is inspirational on a variety of levels and thus I defer to readers of this Blog Post to take from it what you need in order to overcome the obstacles of Inflammatory Bowel Disease which you face and resume your life pursuits.  The life dream may be a little different after a diagnosis of IBD but the fire can burn a long time when we use our minds to teach our bodies.  leave a  comment  BUTTON

4 Tips for Helping You Cope with Breast Cancer

Breast Cancer March 28 2014

This guest blog on breast cancer help was written by ShareCancerSupport.org, a non-profit organization dedicated to helping women facing breast and ovarian cancer. For more information, visit their website.

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A breast cancer diagnosis can be scary, and it rightfully should be. If you or someone you know just got this heartbreaking news, you may be wondering how you will go on, and what to do from here. Cancer and its correlating treatments can bring about both emotional and physical changes, and here are a few ways to help you cope with these changes and the thoughts, feelings and emotions which often accompany them.

 Talk About It

Whether it’s to a friend, family member, a pastor, rabbi, co-worker, or your own personal God, talk about what you are feeling and going through. Don’t struggle and keep your thoughts, feelings and emotions to yourself because it will make you feel “healthier,” or at least more “normal,” if you let them out, and get them off your chest. In that regard, scream, cry or do whatever you must in order to get those sensations out. Keeping them inside your body will do you more harm than good, and by sharing these thoughts, feelings and emotions you will be giving your loved ones their desired opportunity “to be there for you.” It will also get rid of a great deal of anxiety when you share your feelings with someone who listens to you.

Live Life One Day at a Time

With all that lies before you, it can seem overwhelming trying to think about what will happen in the future. Therefore, take time each day to do things that make you happy, and be around positive people who love you. Focus on making it through one day at a time, and not trying to think about what will happen next week, month, or year.  Just put “one foot in front of the other” to get through difficult days.

There will also be days when you can’t do anything but cry; and you need to understand that’s “ok” due to the overwhelming nature of your diagnosis.  This reaction is a perfectly normal response to coping with something so huge.  More importantly, never be ashamed to let people see you cry. You are human and have emotions like everyone else.

Take Care of Yourself

If you feel like going to a movie and going shopping do that! If you feel like curling up on the couch with a good book, that’s great too. Take advantage of offers you get for help around the house, with childcare or a meal. Eat a healthy diet, and take all your medications as prescribed. If you are tired, make sure to rest, and never try to push yourself to do something you truly aren’t up to doing.

Remember You Are Not Alone

Last, but not least, always remember that you are not alone in this. Thousands of women every year get this terrible diagnosis, and there are support groups everywhere which can help you find people to talk to.

My 1984-1985 “Diagnostic Journey” to Crohn’s Disease

Crohns March 24 2014

 

 

 

 

 

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Due to various painful ramifications of my recent successful Hip Replacement Surgery, “I didn’t have time to write a short letter, so I wrote a long one instead.”  Mark Twain 

Mind, Body & Spirit vs. Damn the Torpedoes

In my most recent Blog Entry I described the “Diagnostic Journey” as the necessary undertaking patients must initiate to make sense of their serious, abnormal, debilitating and unrelenting medical symptoms and doggedly pursue the proper diagnosis and successfully treatment pursuant to some CPT or HCPCS insurance code while the world of traditional medicine doesn’t recognize their symptoms as reflective of ANY such insurance codes and health care professionals characterize their palpable complaints as stemming more from their mind than from their body.  Accordingly, powerful and pervasive psychological doubts can creep in from patient exposure to repeated conclusions by the most respected and erudite of medical professionals that what appears as real to these patients as the need to breathe is invisible and thus of no physical consequence.  Due to the societal pedestal upon which most doctors are placed by the patients’ friends, colleagues and loved ones, these doubts logically can spread to the counsel of these patient confidantes and then the Diagnosis Journey itself could be compromised.  It is at this point when lonely, counterintuitive self-assuredness intersects with seemingly proven scientific hopelessness and the patient’s mind, body and spirit must agree to move forward, damn the torpedoes and commence the “Patient Diagnosis Journey.”

The Support of my Parents & “Available Time” fueled my Cause

In 1984 when I faced such painful, unpredictable, systemic and often bizarre symptoms, I was just a naïve 21-year-old and it didn’t make sense to me that a person could suffer as much as I was with palpable and obvious medical symptoms yet doctors couldn’t help me. Moreover, when doctors realized they couldn’t help me they openly donned my sincere, desperate and at times severe complaints as apparent “made-up” problems to seek attention.  It was as if by stumping them, they resented my having challenged their medical expertise and experience.  For some reason, their sheer arrogance and what I perceived to be “meanness” at the time only strengthened my resolve to figure out the cause of my dire situation.

My determination sounds cool and tough but the reality is it all would have been for naught if I did not have the unyielding support of my parents.  That support came in various forms and included coming to doctor appointments with me for moral support, helping me with the health insurance paperwork, paying for much of the costs incurred on my Diagnosis Journey and literally holding my hand and telling me “everything’s going to be okay” when I was in the fetal position on the bathroom floor trying to manage the increasingly severe abdominal pains most times I felt a bowel movement coming on.  Additionally, I was single and just out of college at the time so there were few obligations I couldn’t put off or postpone to pursue the correct diagnosis and treatment for my medical problem.  That said, it occurred at a time in my life when I was supposed to begin some type of professional career but I hadn’t yet figured that out and my unpredictable health issues made temporary jobs the best fit for me.

What Happened to Me in 1984/1985, Shouldn’t Happen NOW

During my Diagnosis Journey, I became astonished at the narcissistic and rote manner in which most doctors performed their job.  For example, the more specialized the doctor, the more they seemed interested in only validating their learned expertise by telling me with big scientific words what my symptoms did not indicate; as opposed to listening to me as a person and trying to apply their formidable medical experience and talents to assess my medical problems, no matter how atypical they appeared.  In fairness, it was 1984/1985 and I think the doctor-patient dignity and respect disparities have substantially changed due to the proliferation of health care social media and the democratization of most healthcare “transactions” such as the doctor-patient diagnosis/treatment discussion in the Exam Room.  Perhaps more importantly, it is the ability of patients to almost instantaneously swap stories and symptoms with other patients from all over the world which has created a technology-powered “Patient Movement” which has empowered patients with incredibly valuable information to help with all diagnosis and treatment situations.

I caution these newly “Empowered Patients” to nevertheless always be respectful of all Health Care Professionals because it is mutual respect which will create the “collaborative” relationship they seek, especially with respect to diagnosing and treating chronic, autoimmune or rare diseases, when “listening” is the most productive tool in the Exam Room.   There are many other ways patients can now utilize health care social media platforms such as Facebook Groups, Google+ Hangouts, TweetChats, Podcasts and Skype sessions but I leave that discussion for another Blog Entry.  However, just knowing the many ways in which patients can now be aided in being diagnosed and treated helps me sleep at night knowing that another child or young man won’t have to go through what I did in 1984/1985 to be correctly diagnosed and treated with Crohn’s Disease.

My Diagnostic Journey w/ Crohn’s Disease – A Foretelling Childhood?

It was 1984 or so and I had just made it through four (4) years of college foolishly thinking having a hangover was how everyone felt when they woke up in the morning.  I always had stomach “issues” going back to my childhood but they never became “systemic” (i.e., they never affected other body parts or systems) as eventually I was always able to connect them back to either indulging too much in alcoholic beverages, eating greasy foods late at night or, eating food which, for some reason, did not “agree with me” or slowed down my digestion to the point where I would get “distended” or visibly “bloated” and have to lie face-first on my bed for a few hours to combat the pain.  As I found out later in life, my parents were well aware of my stomach problems ever since I was a baby as they had great difficulty finding baby-formula which I was able to properly digest.

I also learned during a recent chat with my Mom while interviewing her about her role as a “Caretaker” for a Documentary my Nonprofit Foundation, Crohn’s Disease Warrior Patrol, is producing about the potential severity of Crohn’s Disease, that as a baby, on occasion, I would need physical “assistance” from my pediatrician with secreting bowel movements from my body. According to my Mom’s best recollection, occasionally I would scream and cry for hours with a different and more serious type of intensity and she’d take me to the pediatrician where he would examine me and notice a bowel movement “locked and loaded” but too shy to come out.  His forceps then aided what should have been a natural process and I would be fine for many months.  I wonder how he billed insurance companies for that!!!

Additionally, now that I think about it, my first general doctor diagnosed me in high school as having a “slow motility” problem because I was often constipated and, as explained above, became painfully distended.   But there was never a reason given for the causation of the slow motility.  I also remember that symptoms typical of seasonal allergies would affect me year-round and be unpredictable.  The worst of these allergy symptoms was the fatigue which would overtake me to the point where I would need to suddenly sleep at fun family dinners.  My Dad would yell at me to wake up because it was impolite and he figured it was the result of some shenanigans my friends and I had taken part in the previous night.  But I had no control over the sudden onset of the fatigue which made me feel like I had just taken the drug “Benadryl.”

At some point my folks took me to an Allergist and I participated in several diagnostic tests but the conclusions were always vague compared to the specific results my friends received when they learned they were allergic to dogs or cats or pollen, etc. and they had to go back to the doctor every 2 weeks or so for allergy shots.  I always thought that was so inconvenient until a well-respected allergist told me and my Mom after his close analysis of the allergy tests he administered that I would only be free of my symptoms if I lived in some foreign country (I think it was Brazil) because whatever he thought I was allergic to was not grown there.  Unfairly, based on that lone experience, I equated allergists with voodoo doctors but as it turned out, there is some environmental component to my Crohn’s Disease.

Back to How it all Began – Four (4) Wisdom Teeth Extracted

In and around 1984, it was common to have all four (4) Wisdom Teeth extracted at the same time.  I had some type of painful infection or swelling in one of the wisdom teeth so my Mom found me a top notch oral surgeon and during the consultation he convinced me to have all four (4) wisdom teeth out at the same time, especially since I “was a healthy young man.”  While it was performed by an oral surgeon, it was such a common procedure amongst my peers that setting it up and then discussing it with my friends felt as innocuous as anything performed during a routine dentist appointment.

Seriously Swollen & Inflamed “Chipmunk Cheeks”

After the Wisdom Teeth surgery, I woke up the next day and looked like a chipmunk with VERY swollen cheeks.  I had anticipated this “look” and even took some very funny self-deprecating pictures which today would have made their way to Facebook and ruined any chance I had at future employment.  Well, not exactly, as I’m sure I had a future dressing up as a promotional Disney character waiving prominent Sales Signs in front of automobile dealerships to highlight weekend sales to the rubber-necking drivers. Anyhow, after being good-naturedly mocked by everyone within walking distance of my house, I began to experience some pain in and around the gum areas where he had operated but it was tolerable with the pain medication I was given.  Again, this was consistent with every similar oral surgery I had heard about from my friends.  But after the gum pain had resolved in a few days, my cheeks were still very swollen and this was an outlier which kept me in my house for much longer than I had expected.

Nurse “Captain Obvious”

Approximately a week after the wisdom teeth surgery, I remember going for the initial follow-up exam and prior to the oral surgeon entering the exam room I noticed “concern” on the faces of the nurses.  Each was observing me like a laboratory rat until the one loquacious youngest nurse commented that she had never seen someone’s face still so swollen one (1) week after the surgery.   The others appropriately looked at her with contempt for sharing such a potentially litigious professional observation.  The oral surgeon was not as forward as Nurse “Captain Obvious” when he first saw my super-swelled cheeks as he made some funny comments about them to diffuse the strange type of tension which was discernible in the room.  After examining me more closely, he told me everything looked fine but because the swelling was still on the extreme side, he was putting me on a course of antibiotics strictly as a precaution to guard against an infection.  He didn’t specifically explain the inflammation and by the casual way in which he handled things I just assumed this had happened to other patients and that Captain Obvious was just inexperienced.

THROBBING Cheek Muscle “Rebound Pain”

The antibiotics seemed to be working in terms of reducing the swelling in my cheeks but they were causing me a continuous upset stomach.  Since I only had a few days left of the antibiotics, I figured I would ride it out and tolerate the stomach pain for the benefit of being able to show my face in public and simultaneously conclude my interactions with the oral surgeon.  However, just around the time the swelling in my cheeks had receded and returned to normal, I began experiencing a seemingly “phantom” pain as the muscles in my cheeks came alive like a developing California wildfire suddenly turned fierce by the Santa Ana winds.  It literally felt as if someone had stretched my cheeks as wide as possible and kept them stressed for a significant time period such that now my cheek muscles were throbbing as a result of having been over-extended for so long.  Based on my inability to sleep or do anything but hold hot compresses against my cheeks, I thought this unrelenting pain might be indicative of a more serious problem or infection so as I was initially instructed by the oral surgeon about any complications, I went back to the oral surgeon to seek treatment for this latest development.

NSAIDs not for me due to “Bad Stomach”

Ever since I was a teenager, anti-inflammatory drugs were never an option for me because I had tried some popular over-the-counter brands a few times for common sports injuries but they always caused such severe stomach pain that my general doctor who was aware of my “bad stomach” advised me to never again take “NSAIDs” [i.e., non-steroidal anti-inflammatory drugs].   His stern warning about over-the-counter drugs seemed strange at the time but I do recall it came after an emergency room visit when my abdomen had become dangerously “distended” from me taking several NSAIDs so that I could play in some basketball tournament with a severely sprained ankle.  I had advised the oral surgeon of this at the get-go just as I did all new health care professionals before they began treating me since NSAIDs had become quite popular both as a pain reliever and to reduce inflammation and it was unusual that I could not take them.  If any doctors questioned my sensitivity or they nevertheless tried to convince me to try a new NSAID, I invited them to contact my general doctor who had been treating me since I was a young boy.

I thought about this as the oral surgeon explained this cheek muscle pain to me as a minor consequence of him having to use a surgical device to hold open my mouth for the duration of the wisdom teeth surgery. Instinctively, he suggested that any over-the-counter Anti-Inflammatory medication (i.e., NSAIDs) would handle the pain.  But then he remembered I couldn’t take NSAIDs and he assured me not to worry as the pain would go away shortly when the cheek muscles “recovered” from the trauma of having been stretched by a mechanical device for a few hours.  He also again prescribed some typical post-operative antibiotic just in case an infection was developing.  But this was a different anti-biotic because I had complained to him about how upset my stomach became from the last antibiotic he had given me.

Narcotic Pain Medication for Painful Inflammation

The oral surgeon had answered all of my questions but I found it strange he was offering no medical relief for my non-stop throbbing pain, which he caused and which was preventing me from going to work for a few days.  I thought to myself, “Maybe he’d let me stretch his mouth open for 3 hours so he could understand the intensity of the pain I was dealing with?”   In any event, I thanked him for alleviating my fears about the pain being indicative of a more serious problem and asked him for more narcotic pain medication so I could function as a productive person at my new job in New York City while my cheek muscles returned to their normal respective resting places on my face.  I also commented that this cheek muscle “rebound” pain was worse than the inflammatory pain from the surgery.  But before I could finish my sentence I could see the oral surgeon make a face as if he thought I was crazy or driven by some other agenda. To illustrate his point, he commented that I was the only person who had complained of this pain being so severe since anti-inflammatory drugs seemed to alleviate the pain.  I then reminded him that I couldn’t take any NASIDs and I could see him slowly begin to understand my situation as he began to commiserate with me.  He then even attributed my inability to take NSAIDs as the reason why my cheek muscles hurt so much.  Still, he was not writing a prescription other than the one for antibiotics and I wasn’t leaving his office until he did.

It seemed as if he thought I should not require pain medication for the inflammation in my cheek muscles since no other patient had required it despite the fact that he knew they were aided by NSAIDs, and I was not.  Accordingly, I just stared at him waiting for the prescription and I ignored his facial expressions conveying his obvious thoughts that I was somehow trying to string out a Percodan or Percocet high.  He relented after he realized I wasn’t budging and without looking at the Percodan prescription to determine the amount of pills, I thanked him for treating me in such a personalized manner.  Since I didn’t know how long this cheek muscle inflammation would last, I deferred to his professional judgment and was prepared to trust him that it would be a very short period.  I then hoped this was the end of my relationship with the oral surgeon even though he was a nice man.  I was just tired of the hassle of going back to him and also having to substantiate my need for different medical treatment than other patients for what was a relatively common medical procedure.  (Unfortunately, I would soon have to get used to life-long complications from routine medical procedures and begging doctors for help regarding pain from inflammation because 30 years with the autoimmune and inflammatory Crohn’s disease made no medical procedure “routine” and it also left me unable to normally fight inflammation and this made virtually every similar interaction with healthcare professionals just as awkward, difficult and dignity-defying.)

Wisdom Teeth Inflammation, Take 2 – “2nd Verse, same as the 1st”

They say “you meet the same people on the way up, as you do, on the way down.” So, a few weeks later, when, without provocation, I woke up and the LEFT side of my face looked like I had just gone through another multiple wisdom teeth surgery, I was glad I had left the oral surgeon on such good and respectful terms. As I recall, my last communication with his office was over the phone when he had to switch me again to a different antibiotic as the one I was taking for the cheek muscle pain was causing intolerable stomach pain.  I was not in pain this time from the swollen cheeks but I again looked like a chipmunk so it certainly fell within the “complications” department necessitating a phone call to the oral surgeon regardless of how much time had passed since the initial surgery.  But when I called his office about yet another swollen cheek problem related to my surgery, I think they thought there was something wrong with me mentally because it seemed impossible for my cheeks to swell up again to chipmunk-level almost two (2) months after I fully recovered from the wisdom teeth surgery.  Reluctantly, the receptionist put me on hold so she could speak to the oral surgeon to figure out when he could see me.

At first she came back with an appointment in 3-weeks’ time but then I carefully explained to her that I looked EXACTLY AS I DID THE DAY OF THE ORAL SURGERY and I wasn’t waiting 3-weeks for whatever infection brewing inside of me to cause me even more problems.  I also asked her rhetorically how many of his patients had such serious inflammation in their cheeks two (2) months after the oral surgery.  She politely placed me on hold again, and after another consultation with her boss, the receptionist now had an attitude and sternly said the “doctor” would squeeze me in later that day but I must be prompt otherwise he would not be able to see me for a few days.  Her attitude bothered me because if this were her, she’d be crying and threatening to sue but I needed THIS particular oral surgeon to witness and exam my mouth and cheeks so I complied with her marching orders.

“The Boy in the Plastic Bubble”????

As I traveled into New York City from Queens, New York, my mind raced after the worst possible medical situations and it concluded that I might be turning into the “Boy in the Plastic Bubble.”  My oral surgeon was certainly surprised by my appearance but he played it down thinking I simply had another infection. He began giving me stronger antibiotics partly to help me get better and, I suppose, also to cover his ass, in case I did not.  Over the next few days, however, he again had to keep changing antibiotics because one hurt my stomach more than the other.  This abdominal pain was also a new feeling as it felt like my stomach was RED-HOT and “agitated” such that anything I ate or drank triggered a “punch in the gut-like” pain.  For what it’s worth, I was also beginning to experience noticeable knee pain and complete lethargy would “come over me” unpredictably and make my legs feel like they weighed 1,000 pounds, just as it had when I was a kid at some fun family dinners.

I had no idea what these other symptoms had to do with the wisdom teeth extraction but something strange was going on inside my body yet it was only visibly manifesting itself in the form of embarrassing inflammation of my cheek on the left side of my face.  I had an “Invisible Illness” with a “tell” of occasionally swollen cheeks.  If the Internet had existed at the time, my desperate Web MD searches might have convinced me I was really a fish or a bird only disguised as a mammal.  Regardless, I again trusted this oral surgeon’s simple/logical explanation mostly because I wanted to, as his explanation was less frightening than mine, which was fueled by my fertile imagination which had begun to conjure up a rare incurable immune system disease which would require me to wear a space suit to communicate with friends like in the TV-movie, “The Boy in the Plastic Bubble.”  Eventually, however, after the swelling of my left cheeks had completely resolved, we figured I had been on enough cumulative antibiotic medications to stave off even the most resistant of oral infections so within a few weeks, which I thought was our last meeting, I finally received a clean bill of “dental” health.

Wisdom Teeth Inflammation, Take 3 – Time to see a Medical Doctor

A few weeks after my clean bill of health from the oral surgeon and feeling like Frank Sinatra only to soon be publicly exposed as Jerry Lewis, I woke up on a Sunday morning and the right side of my face had swelled just as it had when I initially had the wisdom teeth surgery.  This was now 3-4 MONTHS since the surgery and it was the 2nd time since the actual wisdom teeth surgery that my cheeks had gotten so inflamed.  First it was the left side and now it was the right side.  My new friend, “inflammation,” wasn’t ready to leave yet.  When I visited my oral surgeon this time he thought I was either a Vulcan or one of his colleagues was playing a practical joke on him in the spirit of the classic TV show “M*A*S*H” when “Hawkeye” and “Trapper” secretly shortened the length of their prank victim’s pants making him think he was somehow still growing as an adult getting taller each week and then 2-weeks later taking-in his pant’s waist size making him think he was also gaining weight at a precipitous pace.

Feeling like a “Leper” for the 1st Time

This top-notch New York City oral surgeon now didn’t know how to treat me and that’s when my LONG, costly, depressing and lonely journey to being diagnosed with Crohn’s Disease first officially “left the station.”  It’s also when I first remember feeling like a medical “leper” as the look in the eyes of this most erudite and confident of oral surgeons exposed his genuine concern for me.  I left his office with some rote physician referrals which ranged from other oral surgeons to gastroenterologists to “TMJ” specialists but the sadness in his eyes made me want to call the United States Centers for Disease Control and Prevention (“CDC”) as I feared I had contracted some rare disease which they kept track of to protect the health of the world population to report my condition!  But at least I didn’t have to take any more antibiotics because at this point I was spending just as much time in the bathroom as I did out of it due to the painful irritation from the different drugs.

Finding Hope amongst Heartless Physicians

This unpredictable pattern of my cheeks alternately suddenly swelling from one side of my face to the other remarkably continued for several more months puzzling every “specialist” who professed at our initial consultation how he or she would soon diagnose my problem and return a sense of normalcy to my life. The list of specialists included other oral surgeons, neurologists, infectious disease doctors and rheumatologists.  Some specialties seemed inappropriate for my overall situation but each came with trusted recommendations whether they were to treat a particular symptom or to diagnose and treat the underlying cause of my medical problem.

In furtherance of their respective specialty, each doctor prescribed one drug or another to help achieve their hypothesized results.  But their well-intentioned theories all proved wrong and the drugs were either unsuccessful or they only ramped up the “angry gut” pain I had initially attributed to ingesting the broad array of antibiotics for treatment of my oral surgery woes.  Additionally, upon failing to help me, practically every doctor subtly shifted the blame TO ME as if I were responsible for not complying with their projected diagnoses and treatment theories.  Only a few compassionate physicians made sure they personally expressed their sincere regret that they couldn’t help me and then genuinely wished me luck on my Diagnosis Journey.

Reflecting upon the “cold” encounters with the heartless physicians, I remember frequently going to bed at night terrified and crying about my apparent hopeless situation and the inimical professionals I might have to rely upon for hope moving forward.  But I quickly grew tired of feeling like a “victim” because it just wasn’t in my personality and I’d be damned if I let disinterested 3rd parties make me feel that way.  I decided to think positively about the often inhumane experience of being brought to one selfish medical professional after another who cared more about their “diagnostic batting average” than my health.  So I focused on the kind physicians who did everything they could to help me and then tried to comfort me when they were unable to do so.  There was a lesson to be learned during this part of the Journey which helped me move forward.  That is, no matter how bleak a situation, you could always find hope, “in the strangest of places, if you look at it right.” [Lyrics to the song, "Scarlet Begonias," written by Robert Hunter and Jerry Garcia.]

Hiding in Bathrooms to bear down on Pain is not Conducive to Friendships

At this point I also began experiencing unpredictable periods of “explosive” diarrhea (sorry to be so graphic but, it is, what it is) and the pain in my stomach had transformed into more of an intense cramping pain which would often escalate to unprecedented levels making me cry with absolute fright until I was able to have a bowel movement.  Going to the bathroom with the expectation of having a bowel movement was now like anticipating “giving birth” and the labor pains were these cramping increasingly severe abdominal pains which made me feel as vulnerable and uncomfortable as a person could feel.

The pain was significantly relieved once I had a bowel movement but sometimes it took up to Ninety (90) minutes for the food and gas to pass through certain areas of my intestines or small bowel.  During that unbelievably painful time period I would hide in bathroom stalls to “bear down” on the pain so nobody would see me cry or make the strange faces which naturally evolved from trying to silence such terrifying suffering.  When it happened at friend’s houses, they began to think I was a weirdo and the invites to hang out came less and less frequently.  My Diagnosis Journey was now affecting my friendships and that caused me emotional pain similar in intensity to the physical pain which kept me hiding out in bathroom stalls. I was a physical and mental wreck.

The Patient Empowerment of Pain

Despite many very knowledgeable doctors concluding there was nothing wrong with me, the tear-inducing, absolutely terrifying and embarrassing bowel movement pain never stopped.  In fact, it actually got worse as I took the different medications prescribed by each aforementioned specialist who tried to help me.  I never distinguished between the possible effects of different foods because everything I ate seemed to wind up causing the bowel movement pain so at times I stopped eating completely for a day or two out of fear of the eventuality of pain.  I simply needed a rest from worrying about where I would be when that pain began.  But then I would remember the alternating inflammation of my cheeks and I gave up controlling the pain through my diet.

It just never crossed my mind that my diet could trigger the “labor pains” especially since every doctor I saw focused on my immune system and the worst of the abdominal pains seemed to occur during or just after a round of antibiotics or other prescribed drugs.  Notwithstanding the bizarre habits I had acquired as a result of worrying about the pain, the severity of the pain actually reinforced my will to continue on my Diagnosis Journey.  It did the same for my parents as I cannot imagine the emotional pain they felt when they repeatedly saw me on the bathroom floor in the fetal position communicating via primal screams with nothing they could do to help me.

Having learned from the often humiliating experiences with the doctors who tried to blame me for my medical troubles when their respective theories proved incorrect, the vivid memories of lying on bathroom floors crawled up into the fetal position in such severe pain always rushed to the front of my mind each time a doctor subsequently tried to blame me for my medical troubles or they questioned my veracity or intentions.  I dreaded that pain but ironically it had empowered me with the confidence and determination to handle whatever adversity came my way going forward during my quest to find out what was wrong with me.

Systemic Symptoms Grow & The Plot Thickens

My list of symptoms now grew to include vision issues, unexplained rashes all over my body, arthritis-like joint pain and more frequent bouts of extreme fatigue.  I also noticed that when my seasonal hay fever allergies kicked in, all of its symptoms intensified, especially the fatigue. This reminded me of my childhood allergy experiences but there was no feasible answer then, and I hadn’t yet found one now.  More importantly, my body’s response to my allergies now included a gastrointestinal response such that my bowels would over-produce gas and cause my gut to become so “distended” to the point where I felt like the “Michelin Man.”

This “Michelin Man” symptom sounds funny but it was HORRIFICALLY PAINFUL as the gas either stayed inside me and triggered those severe cramping pains or it was forced out of me with such pressure that it felt as if I was passing gas AND basketballs such that my rectum became so sore I could barely walk.  It was also obviously socially embarrassing and I recall on more than several occasions my Dad having to come to my job to pick me up and drive me home because the slightest movements triggered these painful and embarrassing symptoms.  I hid in my office or cubicle until he arrived.

It’s easy to share these symptoms on my Blog thanks to the proliferation of health care social media (“hcsm”) and the positive effect it has had on global awareness of my disease.  To that end, if my Diagnosis Journey took place in 2014, I am sure I would have met people on Twitter, Facebook or Google+ who had experienced similar symptoms and I then would have quickly recognized my symptoms as being related to some type of inflammatory bowel disease.  But in 1984/1985, I couldn’t articulate these symptoms without sounding like a hypochondriac at best; and insane at worst.

So my parents and I had to “take a step back” and approach the overall situation logically and consider the unsuccessful theories of the various specialists and the increasing gastrointestinal symptoms and their severity in light of the wisdom teeth debacle.  After careful consideration, we concluded that the wisdom teeth surgery may have been a diagnostic diversion even though it obviously triggered my underlying medical problem.  Therefore, we decided to focus on the gastrointestinal symptoms and locate an experienced gastroenterologist.  We also decided that, if necessary, he or she would coordinate my interactions with any other medical specialists.  Finally, a “Plan” was developing and an answer had to be in sight.  But which Gastroenterologist should we see?

The Cutting-Edge Gastroenterologist & a Hyperbaric Chamber

My Mom and Dad asked everyone they knew who’d ever had an encounter with a GI Doctor (i.e., a gastroenterologist) to recommend someone for me.  This included friends, and friends of friends, who suffered from ulcers, spastic colons or hemorrhoids.   They also solicited the recommendations of my general doctor (or primary care physician) who by now was familiar with my various bizarre symptoms and likely systemic problem or disease. Despite our methodical approach, it was still difficult to find a gastroenterologist who would take me on as a patient when all of my problems seemed to start as a result of having all four (4) wisdom teeth removed at the same time. After a few false starts and filling out several voluminous Patient History forms for doctors I would never see again, the winner of the “Who Gets to Put their Finger up my Ass” Sweepstakes was a Long Island, New York doctor who had the personality of a handball but the apparent credentials of a genius GI Doctor.

During our first consultation in his office, I noticed Genius GI Doctor practically ignored me and paid most of his attention to my parents.  I guess he figured they’d be paying his bills but I thought he crossed a line when he began to rely on my Mom’s well-intentioned animated depiction of where on my abdomen it hurt when I ate certain foods.  As soon as she finished talking and gesticulating with her arms to make her point, I firmly, but respectfully, told the doctor to please address ME, since I was his patient.  I didn’t blame my Mom because she was just so stressed and trying to bring this GI Doctor up-to-speed ASAP but despite my adult-like respectful edict, I could tell Genius GI Doctor thought I belonged at the “kids table” even though I was 21 or 22 years old and frightened by all that was happening to MY body.

We spent almost an hour in his office telling the doctor all about how the wisdom teeth surgery and the subsequent alternating cheek inflammations seemed to start my medical problems and they had subsequently become “systemic” and always involved my abdomen, in one way or another. He listened patiently enough to my parents to justify his steep Consultation Fee but I‘m not so sure he “heard” them and he certainly ignored me because without even examining me his first conclusion was that I needed a few sessions in a “hyperbaric chamber” where more pressurized and pure oxygen might help repair my compromised immune system.  He was emphatic about the hyperbaric chamber but it felt as if he didn’t believe me when I told him how painful the abdominal cramps were because I couldn’t imagine a hyperbaric chamber addressing this problem which was slowly ruining my life.  I carefully conveyed this concern to him but he was looking “through me” and just waiting for me to stop talking before he reiterated his focus on the immediate immune system ramifications of the wisdom teeth surgery and the need for me to start hyperbaric sessions as a key successful treatment of my medical problems.

Dealing with a Stubborn, Arrogant Physician and Worried Parents

We were given a few days to digest the GI doctor’s treatment recommendation so my parents and I took advantage of the time to research the medical usages of hyperbaric chambers.  In short, it was our understanding that hyperbaric chambers were then being used as an option of last resort to help serious drug addicts or alcoholics who’s abusive lifestyles (through needle-sharing, bottle-sharing and the hard life of living out on the street) had ruined their immune systems to the point where they could not heal from the mildest of illnesses or medical stresses.  THAT was not me and I did not appreciate being looked at in such a way.  Genius GI Doctor must have concluded there was something “sketchy” about me based on the bizarre alternating cheek inflammations arising from the wisdom teeth surgery.  What was worse, Genius GI Doctor, due to his impressive credentials which came along with his “conclusion,” had now planted some doubt about me in my parents’ heads and I had to reverse that to keep them on my side as I desperately needed their support on my “Diagnosis Journey.”

 Standing Up for Myself with a Doubting Doctor

I did not like this GI doctor but I didn’t have the heart to ask my Mom and Dad to spend more time and money finding me another GI doctor. Therefore, we returned for the follow-up appointment after a week in which I suffered through several severe bathroom “episodes” and I told the doctor there would be no hyperbaric chamber because I was not a drug addict or an alcoholic and I resented him classifying me as such.   He looked at my parents confidently assuming they would agree with him that I was in denial but they backed me 100%.  Further, I asked Genius GI Doctor if there were any blood tests I could take to immediately prove I wasn’t a drug addict or an alcoholic because I wanted to move on to finding out what was wrong with me.

I had “partied” a bit in my college days and like all young adults graduating college at the time, I had experimented at different times with “social drugs” but I was a collegiate athlete still in excellent physical condition, that is, except for my “bad stomach” and feisty cheeks  Whenever I thought about getting “high” with my friends as a way to escape for just a few hours from my medical problems and thus far unsuccessful Diagnosis Journey, the possibility of that cramping, severe pain in my gut scared me so much, I had even abstained from “social” alcohol and stopped drinking soda fearing either would aggravate my stomach and cause that terrible cramping pain.  I guess you could say I was “Scared Straight” – from even drinking soda!

Genius GI Doctor took me up on my offer but with obvious skepticism and he immediately administered a variety of expensive blood tests that day in his office.  It seemed as if I was being administered a Lie Detector Test of sorts since in the doctor’s opinion my bizarre symptoms did not seem to match up with my verbal account of the story.  A few days later he called me with concern that some of my blood counts were abnormally too high and some were too low which typically meant I was fighting some type of infection or inflammation and/or I might also be bleeding inside my bowel.  The topic of drugs and alcohol never came up again and to this day I have never heard the term “hyperbaric chamber” mentioned by a physician.  I knew my body and was confident I was healthy and didn’t belong in a hyperbaric chamber but I wanted those blood tests performed on me more to boost my parent’s confidence in me after all the doubt Genius GI Doctor had possibly instilled in them when he attacked my character without scientific cause.  After all, without my parents’ support in 1984 and 1985 during my Diagnosis Journey, I might have suffered for several more YEARS before being properly diagnosed with Severe Crohn’s Disease.

Right Diagnostic Tests but Wrong Conclusions

Genius GI Doctor’s concerns about my blood work prompted him to perform a few abdominal-focused diagnostic tests on me.  These tests included a GI Series, an Endoscopy and a Colonoscopy.  He seemed to believe me now, but then again, he still had the personality of a handball so it was hard to tell what he was truly thinking.  Nevertheless, he was clearly “covering all bases” to hopefully provide an explanation for my symptoms and I was glad someone was being so genuinely interested and comprehensive about my medical problems.  Unfortunately, and for reasons I will never understand, all of these tests were essentially negative besides showing minor “sores” and “abrasions” in my small bowel and duodenum.

Granted, these abdominal conditions required medical attention and medication but my blood work seemed to indicate much more serious conditions but these traditionally accurate tests concluded there was nothing substantially wrong with my bowels or intestines which would explain my continued complaints of a severe cramping pain, unpredictable diarrhea, joint pain and extreme fatigue.   Looking back, I also never had a fever or significant weight loss and I think every doctor who examined me put too much emphasis on their absence as symptoms almost as if they were integral ingredients to a serious systemic gastrointestinal diagnosis.

Based on my understanding of the typical symptoms of Crohn’s Disease, fever, weight loss and loss of appetite are usually a part of “flare-ups” but in 30 years with Crohn’s Disease, I have rarely had any of them accompany a flare-up.  Much about my symptoms or absence of symptoms was atypical for common gastrointestinal diagnoses beginning with the recurrent cheek inflammations to the lack of significant weight loss as I somehow kept up my athletic build.  I was often too tired to exercise but when I was able to work-out or play ball, I lost myself in it as a coping mechanism for all I was going through.  That made me look “fit” and not nearly as sick as I honestly portrayed myself to doctors.

I remember feeling unlucky that these tests did not portray the realities of my day-to-day struggles but then it just didn’t feel right to wish for serious symptoms to be revealed by these tests.  Who knows, I could have been diagnosed with Colon Cancer if the right symptoms appeared during these diagnostic tests.   It was a strange feeling hoping for medical corroboration of my symptoms and simultaneously praying nothing too serious showed up on my tests.  On the one hand, I’d feel lucky if my complaints were validated but on the other, I’d be devastated if I were told I had some incurable disease.   They say not to wish for things because you might just get them and that’s the mental approach I tried to maintain.  After all, who wants symptoms of an incurable disease?  However, nothing in my life would change without medical evidence which explained my symptoms.

“It’s All in Your Head” – Hello Shrink

Nevertheless, my parents and I were devastated when these invasive diagnostic tests were negative and wondered if they were simply administered at a time when whatever disease I had was inactive. The GI Doctor did not share my optimistic approach and was forced to conclude I was physically fine.  Sensing my grave disappointment, my parents initiated a meeting with Genius GI Doctor to determine what I could do next to get to the bottom of what was wrong with me.  They had seen me scream and cry on the bathroom floor too many times to question my pursuit for an answer and treatment so they went into this meeting thinking there must be a GI specialist I could see who could perform different tests.  I felt the same way.

Feeling Hopeless, Losing my Composure & Perceptive Parents

Perhaps Genius GI Doctor needed to witness one of my “flare-ups” to be similarly motivated because during the meeting he all but called me a liar and rather confidently concluded I was someone who craved the attention of being sick and he did not appreciate me wasting his time.  His suggested solution, which this time he directed at my parents as if I was actually sitting at that kid’s table, was for me to see a Psychologist. He was all but calling me a bullshit artist in front of my parents and I started to cry in his office.  The combination of my feeling hopeless and hating this doctor and all the previous doctors who doubted me, overwhelmed me and I completely lost my composure.

There is nothing more frustrating than feeling such severe palpable pain and experiencing obvious abnormal medical symptoms like the recurring cheek inflammation episodes only to be told it is “all in your head.”  Through my tears in the office, I could tell my parents were now also put off by the arrogant style of Genius GI Doctor.  Despite the underwhelming results of the objective diagnostic tests, they were not satisfied with his “Psychologist conclusion” after all the bathroom “episodes” and extreme lethargy periods they had seen me go through.  They also recognized how my Diagnosis Journey had begun to compromise some of my most prized friendships yet I never flinched in my pursuit of an answer.  Since I was a kid, my friends meant the world to me so I guess my parents were quite perceptive as to the physical and emotional toll my medical problems were taking on me because I would never jeopardize certain friendships, but I had done exactly that.

As my Dad was speechless masking his utter frustration and empathy for me, my Mom politely inquired about additional different diagnostic tests but she was abruptly shut down by Genius GI Doctor before she finished her sentence.  He did, however, add that he was certainly available in the future if my symptoms changed or if I had a medical emergency.

We left his office shocked by the reality of my medical symptoms yet the inability for them to be diagnosed.  While prefacing their opinion that they did not at all agree with Genius GI Doctor, my parents suggested I give deep thought to seeing a Psychologist because I was going through a great deal and could certainly use the professional support.  I had zero interest in seeing a Mental Doctor when my physical problems were getting so severe that I was afraid to leave my house for fear of having that severe, cramping abdominal pain at work, in school, on the train, etc.  Besides, I wondered aloud rhetorically, “How could a Psychologist help me with that?”

My parents had no response but I could tell I needed to exhaust this option if only to show my parents, and biggest supporters, that I was willing to try anything to get to the cause of my medical problems.  We also agreed that I would soon see another highly recommended infectious disease doctor but that experience proved more futile than the one with the Genius GI Doctor as he didn’t take me seriously at all and practically laughed me out of his office telling me I should be thankful I don’t have problems which required his care. All I could think about when we left his office was whether this infectious disease doctor would appreciate having his sick, petrified child treated in the same imperious and condescending manner?

Wasting Time with a Psychologist

I chose a local psychologist so that it wouldn’t dramatically affect my life schedule. Our weekly appointments were held in an office attached to his home which had a separate entrance.  Initially, he appeared to be a nice, kind older gentleman who treated me with respect.  But from day one, I could tell he was hell-bent on blaming my “Type A” personality for causing my abdominal problems.  To support that initial “diagnosis,” he would often ask me leading questions regarding how I resolved disputes or coped with stress and he somehow always found a way to connect my assertive personality with the stomach pain I was experiencing.  Some days I would come in explaining how I spent the entire previous night lying on the bathroom floor in agony with severe abdominal cramps.  As I spoke, he listened intently simultaneously jotting down his observations but no matter what he wrote, his verbal conclusion was always that my intense personality was to blame for my medical problems.  If I didn’t have the confidence of my convictions and wasn’t empowered by the fresh memory of my pain to laugh at his poorly veiled attempt to manipulate me, I might have left his office thinking I was to blame for all I had been through the past year or eighteen (18) months.

Passive-Aggressive Manipulation by a Psychologist

With clock-like precision as if he had planned it from the beginning of the week’s session, a bell would ring signifying the end of the fifty (50) minute session just as I was ready to respond to his insulting and condescending insights. I had heard of the term, “passive-aggressive,” but never knew what it meant until my dealings with this Psychologist. I even tried to look up its definition in a dictionary but it was clearly one of those things you had to experience to understand.  In that regard, I understood it quite clearly ever since I met this man and I despised being treated in such a manner by a professional who has the ability to shape minds and influence a person’s decision-making especially after all I had been through since the wisdom teeth surgery.

Accordingly, in what I believe was our last “professional” session, I started the session by “respectfully” accusing him of manipulating me in a passive-aggressive manner to make me think me and my personality were the cause of my medical problems just because they had not yet been substantiated by medical doctors. I paid special attention to my “tone” as I wanted to come across as calm and confident as opposed to the patronizing manner in which he spoke to me.  I also did not want to appear desperate even though I had no idea what I was going to do after I “fired” him.

I also asked him if he thought my “Type A” personality had caused my cheeks to get abnormally inflamed after the wisdom teeth surgery and subsequently recur  on different sides of my face, weeks and months later.  I never raised my voice or became disrespectful to him in any way.  I stayed true to my intentions and hoped he respected my frankness such that he’d finally address me “man-to-man.”  Unfortunately, what I thought was a courageous gesture by me was treated as if I was making polite, irrelevant inquires about his pet.  He just looked up from his notes with the same deceptive smile he had worn since the first day we met and ignored my direct questions.  When he started to speak he asked me why I felt the need to question him as if the content of my question was of no concern to him.

Until we meet again Mr. Manipulating Psychologist

I told him I wanted answers to my questions since they addressed the exact reason for my presence in his office.  I was not interested in playing some  psycho-babble game with him as I was seeking answers to my underlying medical problems while he was manipulating my now desperate Diagnosis Journey for money.  Finally, his deliberate silence and then patronizing tone and phony smile were too much for me to bear and I firmly, and again, respectfully, demanded answers to my questions, but this time in a louder tone.  Naturally, time ran out again as his “session clock” alarm bell went off.  Without skipping a beat, he closed the notebook in which he had been recording his observations about me, stood up and with a smile on his face said something to the effect of, “I think that was a very productive session and next session we’ll pick it up just where we left it.”

Since my efforts to get direct answers from him were a complete waste of time, my frustration got the better of me and I got closer to him to ensure he LISTENED to everything I had to say.  He was a little intimidated by the rage evidently showing from the way in which I had confronted him and I told him I did not respect or like him from the get-go because before he even met me he had concluded that my medical problems were “in my head” or the result of my intense personality, when at that time, he knew nothing about me.  He just smiled in an effort to diffuse the situation and said something like, “We’ll pick that up as well next time.”  We sure did, as you will shortly see.

Taking A Break from the Diagnosis Journey

Longer story short, I took a break from seeing the Shrink after that last encounter because I was tired of his condescending attitude and made-up mind about me.  I also thought it was a waste of my time and money, both of which I desperately needed to continue my Diagnosis Journey.  I had kept my parents in the loop the entire time so they acknowledged my good faith attempt at seeking Psychological Counseling.  In retrospect, it was just the WRONG Psychologist because I have since seen many friends and patients benefit tremendously from the wonderful effects of Counseling but it/he just didn’t work for me.  So I decided to focus the next few weeks on my job and tried to live as if I no longer had these medical problems.  Naturally, my impression of a Pollyanna didn’t last long but at least I was able to focus on my job and my Diagnosis Journey was temporarily placed on hold.  I feared the repercussions, but then again, I was having “flare-ups” while actively engaged in the Diagnosis Journey so I didn’t see the the difference except the prioritizing of my job which had been “second chair” to my medical problems for quite some time and I needed to solidify my professional position. I also thought maybe it was time to let things “come to me” for a change instead of chasing the wrong doctors or taking the wrong medications.

How my Diagnosis Journey affected my Professional Life

It was a normal work day, late afternoon at my first significant job in New York City and a colleague’s birthday was being celebrated.  I didn’t know most of these people very well because while I had worked there a little less than eighteen (18) months, I kept to myself because my medical problems had created what others might have thought was “special treatment” so I wanted to “keep my distance” and not reveal too much information since I was still in the dark about it.  But the office fostered a nice atmosphere and I felt like I belonged and was anxious to see where the opportunity led.  My medical problems had wreaked havoc on my professional life in terms of the time off I needed to get well or to manage the increasing systemic symptoms. But the owners of this business liked me and understood my unsettled situation and they even let me work from home when I needed to.  As long as I completed my work on time, no questions were asked.  I was very appreciative of their understanding and when I was able to work without medical interruptions, I came early, left late and worked hard. I also made sure that when I worked from home, I always accomplished significantly more than what was expected of me. But even under those flexible circumstances, I knew I was low on the totem pole and any additional extended absences or the continued need for the flexibility to work from home would force them to terminate me due to the precedent it set and the subsequent likely unwanted similar requests from other employees.

Flavored Popcorn leads to my Diagnosis Destination

After a productive day of work, I put my medical troubles away and decided to partake in this colleague’s birthday festivities.  I remember I nursed a beer while I tried to be very careful about what I ate for fear of initiating a “flare-up” at the office.  At the time, flavored popcorn had become quite popular so this “hip” New York City business had every popcorn flavor available.  I was never a big popcorn fan but everyone was talking about the flavored popcorn and with a little prodding from a pretty co-worker who was my only true friend there, I sampled a few different flavors to “fit in” and everything seemed to be fine.  Approximately 20 minutes after I had eaten the first popcorn flavor, I began to feel an extremely painful sensation I had never experienced before as it felt like my intestines were “twisted.” It mimicked the severe cramping pain I was familiar with so I was able to smile in-between cramps but when the cramps were at full strength there was no facial expression I knew of to mask my pain or fear because if the pain got any worse I thought I would pass out or my stomach would burst. In another 10 or 15 minutes, the severity of the pain quickly intensified even more as I imagine the other popcorn flavors were similarly affecting my intestines so I quickly found the office bathroom and prayed for a bowel movement so that the pain would ease or leave my system completely.  Unfortunately, it didn’t work like that and devising that genius plan was the last thing I remembered happening at the office party.

Being Hospitalized directly from an Office Party is not a good Career Move

Apparently, I was rushed by ambulance to the closest hospital and after the Office Manager had contacted “my loved ones,” my out-of-her-mind in fear Mom called good old Genius GI Doctor begging for his help and he was kind enough to quickly contact a close GI colleague of his who had privileges at the hospital and he made sure I was well taken care of.  When my Mom explained to Genius GI Doctor what had happened, he assured her I would be fine and he also told my Mom to tell me that he wished me well.  That was nice of him.  What I do remember is being “handled” by EMT gentlemen back at the office and going in and out of consciousness.  Each time I was awake I couldn’t help but scream about the pain. It felt like my intestines were sure to explode with each successive cramp.   Thankfully they kept giving me medication for the pain and each time they did, I fell back asleep.

I imagine I was sedated and/or sleeping for 2 days or so because the pretty co-worker visited me in the hospital a few days later and she provided a blow-by-blow account of my afternoon/night at the office.  Listening to her account of my actions at this office made me cringe but I could tell by the tone in her voice that she and my co-workers were concerned about me and I had done nothing wrong.  I also had a little crush on my pretty co-worker and now it felt like the feeling was mutual.  I even joked around with her that I had been trying to get her alone so we could really talk and nothing else worked so …  Probably a cute or funny line under the proper circumstances but certainly not effective lying in a hospital bed in a basically see-through hospital gown with an “NG Tube” running through my nose into my stomach to slowly siphon out anything in my intestines.

She went on to tell me she knew I had gone to the office bathroom because I had excused myself from talking to her to go to the bathroom but she never saw me again and wondered where I was.  For some reason that jolted my memory, and with her assistance filling in some of my memory holes, I started to remember I was lying down in the bathroom for a long time and to avoid the embarrassment of another co-worker seeing me in such a compromised state, I did lock the door. But the pain became so intense that I passed out and was unresponsive each time someone tried to figure out why they couldn’t get into the bathroom.   After several people tried to use the bathroom but couldn’t, the Office Manager came over and heard NOTHING coming from the bathroom and then my pretty colleague publicly remarked she hadn’t seen me since I went to the bathroom.  It quickly became obvious that it was ME in the bathroom and I was in serious medical trouble so they broke the door down and found me passed out lying on my left side in the fetal position.

Diagnosis & Validation by a Crohn’s & Colitis Foundation (CCFA) Brochure

I had suffered an intestinal obstruction which was brought on by the popcorn.  The pain was so severe that I was heavily sedated for a few days before they could even perform various diagnostic tests to figure out why I obstructed from the popcorn.  These situations are treated much differently these days but in 1985 I was given shots of the powerful narcotic Demerol every 3 hours and I was a zombie for several days.  I also had an “NG Tube” placed into my intestines through my nose to siphon out all the fluid above the obstruction to lessen the pressure which was causing all the pain.  The hope was that the continued combination of not eating or drinking, the insertion of the NG Tube and around-the-clock intravenous steroid drugs to decrease the inflammation in my intestines would alleviate the obstruction so I could tolerate drinking various foul-tasting radio-graphic fluids so the doctors could perform the necessary diagnostic tests.  This process took 5 or 6 days and then a day or so later my new GI Doctor came into my room and told me and my parents that I had a classic case of an incurable, autoimmune, Inflammatory Bowel Disease (“IBD”) called Crohn’s.

Each word of the diagnosis was shocking and scary especially since we couldn’t even spell the name of disease and had never heard of it.  Then the doctor handed my Mom and I a pamphlet published by the CCFA which explained the various symptoms of Crohn’s Disease and it was like reading a description of all I had experienced the past 18 months.  From the inability to fight inflammation to the unpredictable exhaustion to the intolerable severe cramping pain during a flare-up, I strangely felt validated by this very scary description of a disease I now had to contend with for the rest of my life.  Also, as it turned out, eating popcorn is one of the most dangerous things to do with Crohn’s Disease because the intestines can’t digest it and as a result they become painfully inflamed.  To that end, I have never eaten Popcorn since that day almost 30 years ago.

But just as my Mom and I had finished discussing the amazing similarity between the CCFA pamphlet description of Crohn’s Disease symptoms and the symptoms I had as a child and then for the past 18 months as an adult, the hospital room phone rang.  Amazingly, it was the Shrink.

“Do you see what you did to yourself now?”

The Shrink had heard I was rushed to the hospital by ambulance and at first expressed his sincere concern and then made sure I was alright.  I was friendly and appreciative of his call.  But after the pleasantries were concluded and he had confirmed I was okay, he asked rather sternly, “Do you see what you did to yourself now?”  Having just been validated by the CCFA brochure and been diagnosed by every conceivable diagnostic test with an incurable, painful, autoimmune disease called Crohn’s, I was INCENSED and I ripped the phone out of the hospital room wall.

After I recovered for a few weeks and had read all I could about Crohn’s Disease and IBD, I made another appointment to see the Shrink.  His office treated me like a returning patient coming home to the sage prophet but little did they know I was returning to get a REFUND of all the money I paid to see him as he had no business treating patients with Crohn’s Disease because he obviously knew nothing about it.  The day of the appointment came and I calmly greeted him and sat down.  He went directly into his mellow passive-aggressive attack on me and I firmly told him to “Shut up.  I want ALL my money back for each of the sessions you ‘counseled’ me on because you are unqualified to counsel people who have Crohn’s Disease or any other type of Inflammatory Bowel Disease.”

He contemplated my statement as if it were a suggestion and told me it’s good to express my thoughts even if they are antagonistic.  I reiterated I wasn’t kidding and I told him that I would report him to his State Licensing Board if he did not refund all of my money within 30 days and/or if I heard he took on another Crohn’s Disease or IBD case without legitimate proof that he took some type of official continuing education class about treating such patients.  I stood up to leave and he went to shake my hand but I refused and left.  My complete refund arrived in my mail box two (2) weeks later.

Thanks Mom and Dad.  :)