Tag Archives: Humira

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

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

© 2014 CDWP  /  Copyright 2014  /  CDWP  All Rights Reserved

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Treating Pediatric Crohn’s & Ulcerative Colitis Patients

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

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

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

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

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© 2014 CDWP

Copyright 2014 CDWP – All Rights Reserved

Meet a Member of the Crohn’s Disease Warrior Patrol

Ashlee Adams January 25 2014

 Please meet the newest Member of the Crohn’s Disease Warrior Patrol (the “CDWP“), Ashlee Adams of GetBetter.com.

If YOU would like a **Tax-Deductible $25.00 CDWP t-shirt, please visit the CDWP website or Tweet me @HospitalPatient.  Thank you.

You can view pictures of other CDWP Members at the below social media websites – where everyone looks as pretty as Ashlee :)  :

Flickr

Pinterest

** The Crohn’s Disease Warrior Patrol, Inc. (the “CDWP”) is a 501 (c) 3 Non-Profit Charitable Organization dedicated to Raising Awareness about the potential severity of Crohn’s Disease and Ulcerative Colitis.

Crohn’s Disease, Chemotherapy & “Humira”

MAW PPP Dec 4 2012

Where Have I Been?

It’s been a while since I’ve “blogged.” I don’t like to share my thoughts with the world when I am depressed nor do I share them about my “day-to-day” unless they involve something interesting, inspirational or instructional to me and to people around the world living with, and trying to manage, some form of chronic illness.  I don’t care how I come across in the entry just that I honestly share my health and chronic illness experiences with others for their betterment and hopefully for the betterment of healthcare, in general.  While I compile and battle through my “lessons learned,” I encourage you to read other blogs and watch other videos to diversify your knowledge. Crohn’s Disease can be devastating and puzzling and I certainly don’t have a monopoly on the most effective ways to deal with it.  But I have to live life in order to obtain my perspective and that’s exactly what I’ve been doing.  IMHO, sanity with Crohn’s Disease and chronic illness is all about maintaining Perspective.

As for writing from a depressed perspective, I think it would make for an entry too skewed toward the negative and that’s just not fair for me to represent, given that many, or at least some, people look to me for inspiration and I am a positive person such that it is against my nature to write something that would be depressing for the rest of time on the Web.  Complaining about the cards you’ve been dealt in life is akin to crying in a poker game about your hand while playin’ with John Wayne, Robert Mitchum and Paul Newman, circa’ “The Cincinnati Kid.”  I say, “Take it like a man [or woman] and play the cards you’re dealt.”  Worse that can happen is you will be immortalized like the aforementioned gentlemen.  It may be a painful, lonely and boring life, but you will inspire so many and at your funeral the worst people can say is that you were a “Stand-Up Guy [or Gal] who tried to help many.”  And there ain’t nothin’ wrong with that.  I’ve given a few eulogies in my life and being able to call the deceased a “Stand-Up Guy” who helped everyone he came into contact with made everyone in the audience smile.  In such a sad and often tragic setting, that’s pretty cool.

But, that said, I do get depressed but I try to stay away from the computer when that happens.  I find a move theater more therapeutic in such an instance because what’s better than getting immersed in someone else’s crappy life, marveling about how Bruce Willis and Harrison Ford never seem to age or how bizarre some aging beautiful, but woefully insecure, Leading Ladies look in High Definition?  I leave the theater feeling fantastic about all my scars.  So, for those of you who battle chronic disease, it’s okay at times to be depressed.  It is just my opinion not to Post at that very moment.  If you need to write for therapeutic purposes, by all means do so, just hold it back for 48 hours so you and your inner Editor can make sure it conveys your true intentions and not your secret yearning to be dealt a new set of life cards, for Robert Mitchum will find you and kick your ass back into reality.  But if after that 48-hour “Waiting Period” you still think it has value as a Post; go for it and it will stand on its own for all the world to consume. Those are my own self-imposed rules as “Managing Editor” of this Blog, just in case the boys are keeping track on how I’m handling he cards I’m dealt.  OK, Cincinnati?

 Why?

I’ve been reticent the past few weeks/months about my personal details because life has been difficult and I wasn’t sure how to handle or share it.  I guess I find it easier to tell a story after I’ve been through it so I can point out my mistakes, share my successes and learn from both.  Otherwise, a blog can become a verbal “real” Reality Show and I tried to TiVo “Crohn’s Disease” last night and not much came up (but I SWEAR that someone in Los Angeles, CA has been working on a Reality Show for people with chronic diseases).  I can’t ask anyone to understand that but I try to avoid making my life a “reality show” unless sharing medical happenings in real time is paramount to the story I want to tell because I write this Blog for the purposes of helping people looking for “something” to help them make sense out of living with chronic illness, especially an illness so odd, badly “marketed” and misunderstood as Crohn’s Disease and other Inflammatory Bowel Diseases (“IBD”).

The only exception to this is when I am battling a uniquely severe Crohn’s Disease “flare-up” which I think would help others, a long hospitalization for anything (since being a hospital patient is an experience like none other) or going through the process of Chemotherapy (which is just brutal and these days can affect MILLIONS all over the world).  Unfortunately, I’ve added the Chemotherapy exception because I have had to go through it for the second time in 2-3 years for a yet un-explained lung disorder or disease which, after a surgical lung biopsy, keeps coming up as me having “necrotic tissue” [i.e., dying tissue] in both lungs for which some of the most respected medical institutions in the United States have yet to explain despite their best of intentions to try and help me.

I’m working hard toward getting such an answer but that “journey,” like most in healthcare which seek answers to unprecedented questions, is proving to be a long, dark and lonely journey. (Just so you know, this lung “problem” causes Severe Shortness of Breath such that I must live like fictional aging/sickly character “Hyman Roth” in the film “Godfather II” so as to not aggravate my lungs and I also get intermittent “fever attacks” of 105 degrees of temperature.  I get such severe headaches from the 105 fever that I usually start to hallucinate.  But they go away after 6-8 hours so basically they remind me of the fun nights at college.  Still … .)

The Fine People you meet along the Way

As part of my journey, this spring I found a remarkable female Pulmonologist in New Jersey who might just be the most competent and thorough doctor I have ever met (sorry Dr. Mark Chapman but she’s much easier on the eyes that you are as a Brian Dennehy look-a-like!).  She’s the quarterback of my situation (but with Crohn’s Disease likely a part of the problem, Dr. Chapman is directly involved) and that now includes infusion of the chemotherapy drug, Cytoxan, once a month for six months by another extremely smart Hematologist/Oncologist.  But, all of my doctors agree that at some point SOON I must go to National Jewish Health, the number ONE respiratory hospital in the United States.  The slight complication is it is located in Denver, CO and the high altitude there will make it even more difficult for me to breathe.  That’s why the Chemotherapy already started in June, 2013 and the kind folks in Denver, CO have also started the screening process so they can soon see me for at least a week and hopefully diagnose what no one else has been able to do.  Then everyone can discuss the proper current treatment and any after-care medication. I don’t worry about anything and just trust my cards, I mean,  my doctors. 

Why?  Really.  I think, it’s the Biologic medication, Humira

In MY OPINION based on MY EXPERIENCE (that’s MY lawyer-speak to protect me from getting sued for all that I own, which, when you think about it, isn’t much at all but I disdain wearing suits and going to court), I think this rare and complicated lung problem I have has something to do with, or is directly caused by, the Biologics drugs I took for my Crohn’s Disease, most notably the drug “Humira,” the one I was on for the longest period of time. I never had respiratory problems before I started Humira and only suffered SEVERE hospitalized respiratory problems AFTER I took Humira.  To figure Humira has nothing to do with my lung problems is like not understanding the concept of physical attraction after spending just a few moments with the beautiful and engaging actress Rachel McAdams and then going home to your Mom and not having that same almost animalistic feeling.  But then you see a picture of Ms. McAdams again and “the fire inside” instantly lights up.  This before and after, or “ipso facto, as jurists might refer to it, means, “by the fact itself.” Now let me try it in a sentence:  I took Humira for my Crohn’s Disease for a rather long period of time and ipso facto I have a severe lung problem. It is damn possible if not likely or logical.

Respiratory Problems are noted as potentially FATAL Side Effects of Humira (i.e., Fungal Lung Infections) but Humira is SO NEW that the manufacturers, Abbott Laboratories, and the Food and Drug Administration (“FDA”) simply don’t know for sure whether that is true for every Crohn’s Disease patient, if there is a predisposed patient genetic component to contracting such side effects nor do they know which respiratory problems are exactly to blame for such Humira side effects.  However, upon first learning of such frequency and severity of Humira side effects, the FDA issued its “STERNEST” regulatory admonition called a “Black Box Warning” which required Abbott Laboratories to comply with the contents of the Black Box Warning by listing “disclaimers” about these side effects on the Humira “packaging.”  This is seemingly a solid regulatory plan but, like almost everything else in life, the devil’s in the details, and in reality, what is, and what is not, listed on the “packaging” of Humira is negotiated by Abbott and FDA lawyers.

Okay, that’s life and each party has legitimate business and regulatory interests motivating its negotiating strategy but when is “packaging” ever of consequence to a Crohn’s Disease patient eagerly anticipating his or her last opportunity at successful treatment of going into Remission when all other conventional drug therapies have been exhausted?  Do they sell Humira in supermarkets like shampoo where savvy shoppers can compare packaging labels between such potent Biologics?   This scenario was keenly recognized by the FDA and in an attempt to reach as many patients as possible with an important Humira-related Black Box Warning, the FDA went where most patients go, i.e., to YouTube.  Thankfully, the social media dinosaur that is the FDA had the smarts to have its high-level executives read the aforementioned Black Box Warning on YouTube.  For this, I commend the FDA on their efforts to reach as many Crohn’s Disease patients as possible with such social media activism.

Banks & Sub-Prime Lenders /Pharma and the FDA?

While Pharmaceutical (“Pharma”) lawyers and drug lobbyists in good faith attempt to comply with the FDA’s latest “sternest” warnings about early or current patient possible frequent and severe side effects of Humira, they are paid to negotiate or “influence” them down such that they are minimally legal compliant with the FDA’s “stern” warning so as to not negatively or adversely affect the drug’s allure to prescribing doctors and desperate patients as the “Miracle Drug” they portray Humira to be on their TV Commercials.  The FDA, on the other hand, is motivated to bring a drug like Humira to market because it “possibly” provides an answer to incurable illnesses and struggling patients with no other choices.  But is the FDA “pressured” to “come to the rescue” perhaps prematurely?  Is that wishful and well-intended premature approval or Pharma financially-fueled possibly premature approvals for drugs like Humira?  The philosophy behind this match of Pharma and the FDA’s regulatory authority is not all that different from that forged between Banks and Sub-Prime Lenders a few years ago which ultimately almost brought down the ENTIRE United States and possibly WORLD economy.

Who Represents Crohn’s Disease Patients at FDA Humira Regulatory meetings?

 “Let’s Make a Deal” Game Show Host Monty Hall could probably better explain what actually goes on behind closed doors between the FDA and some Pharma companies looking to quickly bring a drug like Humira to market. But who represents the Crohn’s Disease patients during these negotiations which are potentially rigged against the Crohn’s Disease patients themselves?  To that end, a gregarious and smart doctor I met at a speech I recently gave in New York City tried to explain this to me by advancing the notion patients have every right to be at such FDA “regulatory hearings” as they are given “Advance Notice” in the Federal Register.

Given this “Advance Notice,” I asked him how many patients showed up at the last FDA Hearing regarding expanding the approved usage of Humira to certain Ulcerative Colitis (“UC”) cases and he said NONE.  But he added there were at least 37 doctors in attendance each of whom presented cases of the use of Humira in UC cases which resulted in positive outcomes with no side effects.  I remarked the UC patients on Humira who developed Ovarian Cancer, Lymphoma, Liver Damage and Lung Disease must have missed that edition of the Federal Register.  He looked at me with a condescending look likely thinking, “Oh well, just another bitter patient,” until I explained to him that patients read the Federal Register about as frequently as he reads the pornographic magazine Jugs – although given my luck I may have coincidentally been wrong!  Seriously, the FDA got it right when they turned to YouTube because these days educated chronic disease patients congregate on various health care social media platforms and by posting important Humira Black Box Warnings on YouTube, the FDA will eventually reach the affected/interested patients. But the Federal Register?

Humira TV Commercials – a Patient Education Program?  NOT!!!!

Have you seen Abbott’s omnipresent Humira Network Television Commercials?  Does a level of FDA-induced “candor” described above come across or is Humira marketed more like an Erectile-Dysfunction drug promoting the possibility of regaining a certain positive lifestyle?  Does that accurately explain what Humira does for Crohn’s patients?  Does it adequately explain the patent risks?  The video portion is glamorous for 30 seconds or so but the 30-seconds or so of fast-talking voiced-over side effects Disclaimer is downright frightening when you focus on it.   Listen next time.  Also, aren’t you also curious, how Abbott Laboratories reacted under such intense Regulatory scrutiny about Humira by the FDA?

Despite the FDA also issuing at least some serious aspects of these Black Box Warnings to the manufacturers of the two (2) other popular Biologics given for Crohn’s Disease, namely, Janssen Biotech, Inc. for the drug “Remicade” and UCB for “Cimzia,” Abbott Laboratories was the only one which, in response, implemented a multimillion  dollar US Network Television Commercial Blitz.  Here it is: Humira for Severe Crohn’s Disease.”  It seems almost as if Abbott is afraid Humira will soon be taken off the market and they have to make as much profit, as fast as possible.  By the way, Janssen and UCD did not at all change the commercialization of their respective Crohn’s Disease drugs. If anything, they both increased their Patient Education Programs, a patient-friendly logical step.

This is the game played between Pharma and the FDA so as to appear legally compliant but to protect Pharma shareholders from patient lawsuits for side effects which aren’t somehow covered by the broad generalized disclaimed ones conveyed to patients by lawyered-up marketing language used by Abbott in all of its promotional materials.  Given my experience, the FDA is LOSING this game and they are letting Abbott possibly falsely influence a passive United States TV audience of millions.

Again, I commend the FDA for trying to regulate this drug at each and every turn but with health care social media turning into “word-of-mouth” on steroids, they can’t keep up with the effects of a multimillion dollar Humira TV ad campaign.  More dangerously, I think the FDA got snookered a bit when these Biologics were first approved and issued to patients.  There have been too many severe and frequent side effects which additional research time and drug modification could have avoided – in my opinion.

But, Humira does help MANY Crohn’s Patients w/ NO Side Effects

Call me crazy, but it is entirely possible that I might just be a Crohn’s Disease patient (possibly one of many) with a Humira-caused respiratory problem which both the FDA and Abbott have never seen before.  What else would explain a side effect from such a NEW drug not being detected by such prestigious institutions as the Pathology Department at The Mayo Clinic?  Before the drug companies insulate themselves from liability by including every possible “expansive” side effect word in those “voiced-over” TV side effect disclaimer warnings, they must first convince the FDA they are serving a disease constituency of Crohn’s patients with a SAFE drug for whom there is no cure and thus, this is their last hope.   In that regard, I must note here that for MANY Crohn’s patients, Humira works as designed with few or no side effects.

But for MANY Crohn’s patients like Natalie Quinn (simply judging from her YouTube Video), Humira either did not work or it caused such severe life-altering side effects that she’d been better off living with Severe Crohn’s Disease, without ever taking Humira.  More importantly, many of these Severe Crohn’s Disease patients who have unsuccessfully taken Humira wind up with conditions and diseases much worse than Severe Crohn’s Disease, including death.

By way of the REAL LIFE  EXAMPLE bravely submitted by Natalie Quinn to YouTube in a Video entitled, “What Humira did to me!!!!!,“ PLEASE WATCH IT BECAUSE IT reminds me of the FURY of Crohn’s Disease, the potential severity of Humira side effects and how incredibly lucky I am to simply have breathing problems as a possible result of both. 

People, PLEASE start paying attention to this phenomenon of Miracle Drugs like Biologics and Humira being fast-tracked by the FDA and THANK people like Natalie Quinn who are the TRUE heroes who battle Crohn’s and all it involves every waking hour of their lives.

Future Postings

 This Blog started out as a hobby for me but has wonderfully turned into something much more.  I have so enjoyed hearing from other patients and I have learned a great deal from their stories.  In that regard, I intend to update the Blog as events warrant but please be patient with me as the Chemotherapy is difficult and gets me so fatigued I can barely keep my head up at the computer screen.  I’m also trying to capitalize on the extraordinary early adoption of the “Crohn’s Disease Warrior Patrol” and candidly, THAT is what gets me excited every day because “People helping other People truly can be the best medicine.”

Please keep reading and SHARING YOUR COMMENTS BELOW.  Thank you.

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Crohn’s Disease & Use of Biologics Drugs like Remicade, Humira & Cimzia

MAW PPP January 28 2013

In my 30 years with Crohn’s Disease, I am asked more about taking these “Biologic” drugs than any other aspect of the disease. I imagine that’s a good sign because it means the conversation is turning towards potentially successful treatments and possible remission BUT with these advancements comes risks in the form of potential extreme Side Effects. That said, I created this Video as an informative, realistic & positive account of the effects & efficacy of Remicade, Humira and Cimzia in treating Crohn’s Disease.

How the Video is Organized

The Video is organized as follows:

 1.       What are Biologics?

2.       The Science behind Biologics.

3.       What are the specific Biologic Drugs used for Crohn’s Disease?

4.       When are Biologics used to treat Crohn’s Disease?

5.       How are Biologics administered (and how quickly do they work)?

6.       What are the Side Effects of Biologics?

7.       Biologics Side Effects vs. Biologics Efficacy?

 My Current Plight with Biologics Side Effects

For those interested in my current plight with Side Effects from having taken Remicade, Humira and Cimzia (although I was on Humira the longest period of time), I developed a rare Lung Disorder which manifests itself as severe Shortness of Breath coupled with intermittent “Fever Attacks” of 105.  It first started in 2011 and then it was diagnosed as the rare lung disorder, “BOOP,” i.e., Bronchiolitis Obliterans Organizing Pneumonia.  The initial Treatment Plan was 60 mgs of Prednisone for ONE (1) YEAR but my body did not respond and I wound up having success with the Chemotherapy drug, Cytoxan. 

After a few months of Cytoxan in 2001, I thought I was done with BOOP but it appeared to return in early 2013.  However, despite having the same symptoms, a recent surgical lung biopsy revealed my lung tissue was “dying” but the Pathology Departments of several hospitals, including that of The Mayo Clinic, were stumped as to the reason.  Thankfully, I have a smart and proactive Pulmonologist who, in consultation with my longtime Crohn’s Disease Gastroenterologist, is starting me on Cytoxan while they prepare a submission of my Medical Case to the “National Jewish Health Center” in Denver, Colorado, as it is rated the top Respiratory Hospital in the United States.

 But am I truly suffering from Biologics Side Effects?

No medical professional will say for sure whether my lung problem is due to my experience with the Biologics in treating my Crohn’s Disease.  But logic and medical wisdom seem to be pointing in that direction.  After all, when experienced pathologists come across what they label as extensive “necrotizing granulomatous inflammation” in both lungs yet they cannot explain why, it would seem the latest rather potent Crohn’s Disease “miracle drugs” have something to do with my respiratory problems especially since it is respiratory problems which dominate the serious and numerous Humira Side Effects listed on the drug’s container box as required by several “FDA black box warnings.”

 Many Crohn’s Disease patients have no choice

My problems with Humira notwithstanding, I can’t ever forget that I took the drug when I was out of options and Biologics offered me HOPE.  I had exhausted all conventional drug treatments and the mere chance that Humira or Cimzia could get me back some quality of life made my decision to take Biologics a no-brainer.  For a few years it actually worked and with the exception of occasional severe joint pain, it would be fair to say my Crohn’s Disease was in Remission because of Humira and/or Cimzia.  But then routine bouts of Bronchitis turned into frequent hospitalizations and Pneumonia was right around the corner.  Even though various Social Media postings clued me into the connection between Biologics and Respiratory Problems such that I discontinued the Biologics, the cumulative amount of Biologics in my body must have been too much as a 2011 CT Scan of my lungs prompted a Thoracic Surgeon to warn me that I should be prepared for a diagnosis of Lung Cancer after he soon performed an emergency surgical biopsy of my lungs.  He even deemed it an “emergency” biopsy because he feared I might soon lose the ability to breathe on my own and that would make performing the biopsy much more complicated. 

 The price & reward of “Hope”

Perhaps HOPE came at too high a price for ME but that is not the case for MANY Crohn’s Disease patients who suffer NO SIDE EFFECTS.  In that regard, I wish them well when they are faced with this same decision and I am truly optimistic about future NEW Crohn’s drug treatments, Biologics or otherwise, because I think Researchers and Scientists have learned a great deal from patients like me who took Biologics.  To that end, if my struggles help even one child battling Crohn’s Disease who has exhausted the conventional drug treatments, then I submit this Blog Post with a HUGE SMILE.  :)  

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Crohn’s Disease, Humira, FDA, Respiratory Problems & “BOOP”

2013-03-26 19.12.03

What Exit in New Jersey are you from?

This picture of MY ROOM IN THE EMERGENCY ROOM (”ER”), taken by me on Tuesday, March 26, 2013, from a New Jersey Hospital’s Emergency Room (“ER”), was demanded to be deleted from my phone by that hospital’s security personnel as they escorted me out of the ER, after I was forced to remove my own Intra-Venous Line (“IV”) causing my blood to squirt so high it almost hit the ceiling,  No door, no curtains, no privacy; no HIPAA compliance since I was barely being treated; just a gurney, under an Exit Sign, in a hallway in the ER, where I was essentially IGNORED for 5-7 hours.  My medical problems had dehumanized me to the point where some might say I was now just a lyric in a great Bruce Springsteen song like “Jungleland” where song characters agreed, “they’ll meet ‘neath that giant Exxon [i.e., Exit :) ] sign, that brings this fair city light.”  If that doesn’t typify the stereotype about New Jersey, …

These days, Emergency Rooms Render Triage Medicine on Steroids

Ironically, and in retrospect, this Exit Sign was fitting as a description for a bad experience in the ER of a New Jersey (“NJ”) hospital given all the NJ Turnpike Exit jokes which have come to unfairly define New Jersey in the lexicon of the public’s awareness.  However, please try and understand I am not identifying the specific NJ hospital because I don’t think that’s fair since I must have caught it on a busy night and my condition is extremely complicated such that a bad experience was certainly possible, as it is with ANY emergency room  visit in hospitals all across the United States.  After all, emergency rooms in the United States are designed to render triage medicine.  But due to ERs being overtaxed as sources of Primary Care for many Uninsured patients, the ER triage medicine model is on steroids out of bare necessity to keep serving its respective local communities.  If the New York Yankees slugger Alex Rodriguez is any example of what happens to steroid users over the long run, it is no wonder why our ERs are consistently providing unsatisfactory “consumer” results.  Still, in Forty (40) years of going to hospitals and emergency rooms, this was BY FAR my worst experience in over 200 hospitalizations and ER trips.  But just like there exists a Bruce Springsteen, Jon Stewart and Frank Sinatra to extinguish the stench from every “Jersey Shore” and “Housewives of New Jersey” entertainment industry venture which somehow permeates the mainstream’s consciousness, this experience with a NJ hospital and emergency room does not reflect the typical NJ medical interaction.

The Patient Consumer in a Hospital Emergency Room

Now that I’ve set the stage for this ER debacle and provided some context for my experience, please note this will be a two (2)-part Blog Post with this first one adding the necessary medical context for my ER trip so that you understand the seriousness of my situation and thus why I was so disappointed in how I was treated.  Part 2, which I will post shortly, will detail the “consumer” side of things which prompted me to call my credit card company to cancel the $100.00 ER fee I had to pay pursuant to my Health Insurance Plan.  More specifically, just as I might revoke a credit card charge to a shady automotive repair shop which I thought had ripped me off, I did the same with this $100.00 ER charge as I believed the services rendered to me were almost non-existent and I thought it was unreasonable to pay for being either mistreated or treated like an animal.  I don’t blame any one person in that ER but my experience made me re-think how I must use a hospital ER moving forward.  I hope you come to the same conclusion after reading my story. But before detailing what happened to me in the ER on Tuesday, March 26, 2013, it is important that you understand WHY I went to the ER.  Please trust I will make this part of the journey as interesting and entertaining as possible.

Brief Medical Background regarding my Crohn’s/Lung Condition

In order to best comprehend my contention that I was treated like an ANIMAL inside this NJ Hospital’s ER, it is necessary to share with you some pertinent personal medical details regarding my condition since it is a repeat of something I went through during the beginning of the spring in 2011.  As many of you already know, I have been battling the autoimmune and incurable Crohn’s Disease for almost 30 years.  I was diagnosed in and around 1984 when there wasn’t very many treatment alternatives other than surgery for my case of severe (and aggressive) “Obstructional” Crohn’s Disease.  As a result, as of today’s date, I have endured approximately Twenty (20) + abdominal surgeries and over Two Hundred (200) hospitalizations/trips to the ER.  I have also had several other serious surgeries related to, or caused by, the autoimmune aspects of my Crohn’s including, but not limited to, spine fusion surgery, two (2) cataract surgeries and knee, nasal and toe surgeries.

In approximately 1998, after I believe first being formally approved in 1988 as a “group” of “Anti-TNF Agent” drugs by the Food and Drug Administration (“FDA”), the FDA began approving certain specific brands of these drugs to help place Severe Crohn’s Disease patients into remission.  Without getting too scientific, these  “TNF inhibitors” or “Anti-TNF Agent” drugs caused TNF inactivation and that has proven to be important in controlling  the abnormal inflammatory reactions associated with autoimmune diseases like Crohn’s Disease where the abnormal reaction causes the body’s immune system to attack itself, rather than the cause of the inflammation.  The identification of the role of the “TNF” in the inflammatory response of patients suffering from autoimmune disease and the development of drugs to mitigate or control the TNF response were considered major breakthroughs in the treatment of incurable, autoimmune diseases.  As a group, these Anti-TNF Agent drugs are referred to as “Biologics.”

Introduction to “Biologics”

My first experience with Biologics was with the drug, “Remicade,” and it worked VERY WELL, at first, but then I needed the drug infused every 6 weeks instead of 8 and then I soon needed twice the dosage, until I started to develop signs I was allergic to it.  My doctors then watched me very closely and pre-medicated me with steroids, as they infused what would be my final dose of Remicade.  Unfortunately, within 48 hours of that Remicade infusion, I developed what can only be referred to as a “Delayed Anaphylactic Reaction” when my throat began closing and I was rushed to the hospital to be pumped up with even more steroids to counteract the allergic effects of the Remicade.  Please note this does not happen to many Remicade patients and I know MANY such Crohn’s Disease patients who are still on Remicade and feeling GREAT.  Anecdotally, I am also aware of many Pediatric Crohn’s Disease patients who do VERY WELL on Remicade.  In my case, however, as the Remicade had staved off what appeared to be an impending serious Crohn’s abdominal surgery, once I stopped the Remicade I soon thereafter turned up in the operating room.

Enter, the Biologic drug, “Humira”

Post operation, my doctors were concerned about me being on no medication to help thwart off any possible Crohn’s recurrences because my Crohn’s Disease had been very aggressive and each time it flared the possibly of surgery was all too real yet I had very little small bowel left.  Therefore, a year or two later I was put on the next “invented” Biologic Agent drug for Crohn’s, namely, “Humira.”  From a layperson’s perspective, and as it was explained to me, the differences between Remicade and Humira appeared to be that Remicade was discovered/developed using mice proteins whereas Humira was more pure and based on human proteins so that a patient allergic to Remicade might have much better success with Humira.  Humira was also an injectable drug as opposed to an infused one so it offered a greater degree of control over one’s life and lifestyle and that made it even more appealing to patients.

However, Humira came with many Medical/Legal Disclaimers about side effects including possible severe Cancers and lethal Respiratory Side Effects.  At the time I started taking Humira (approximately 2005), I assumed these Disclaimers were included in the drug’s labeling because there now existed some historical real patient data and a bunch of pharmaceutical (“Pharma”) lawyers were simply being thorough and candid in provided new Humira patients with as much patient data as possible. These Disclaimers were subsequently substantially strengthened in August, 2009, to reflect the Cancers which were occurring in Crohn’s patients using Humira such that the FDA issued the Pharma-dreaded “Black Box Warning Label” to reflect the possibility of Lymphoma being a side effect of taking Humira.

Humira, the FDA and YouTube

Beginning in November, 2009, some of the most serious changes in the Humira label came when the Black Box of the label was strengthened to include a serious risk of “opportunistic” respiratory infections including “Histoplasmosis” and “Bacterial Sepsis,” along with the risk of lymphoma and other cancers in children and young adults. The FDA even utilized YouTube in an extraordinary measure to convey these risks to Health Care Professionals and to Patients via THIS Video.  The Humira label was subsequently strengthened even further in response to DEATHS which were occurring from rare but fatal Fungal Lung Infections in Crohn’s patients using Humira. The FDA again used THIS Video and YouTube to convey the dangers of these Fungal Infections.  Leukemia was also subsequently added to this list of known serious side effects of taking Humira for Crohn’s Disease.  Despite this pattern of increasing risks of cancers and fatal respiratory side effects, someone in the marketing department of Abbott Laboratories, the manufacturers of Humira, apparently didn’t “get the memo” from the FDA as TV commercials celebrating the success of Humira placing Severe Crohn’s Disease patients into remission increased and started replacing Erectile Dysfunction drug commercials as the most rotated and parodied drug commercials on TV.   WATCH the TV Commercial HERE.

How Humira affected me re: Respiratory Side Effects

This began to affect ME approximately 12-18 months after I started Humira when I began to experience such severe and unpredictable joint pain that it felt as if I were a Voodoo Doll being pricked by a sadistic arch rival from high school.  The sudden onset of the joint pain was often so extreme that I could be walking and talking one minute and then laid out on the sidewalk the next.  However, my Crohn’s Disease seemed to be in remission so I was “okay” with the tradeoff of 50 daily trips to the bathroom now supplanted by being pricked with sharp needles all over my body by a guy named Skippy from High School just because one night I made out with his ex-girlfriend. :)  But, Skippy’s presence in my life was quickly replaced by recurring and increasingly intense bouts of Bronchitis and Pneumonia.  I, like most other people with compromised immune systems, had suffered from occasional respiratory infections and whatnot but since starting Humira whenever I got Bronchitis it almost always turned into Pneumonia and then the symptoms would be so bad I had to be hospitalized.  That had never happened before.

It is one thing to be 45 and hospitalized for recurrent Severe Crohn’s Disease but it’s entirely a different story when you begin to cough up blood and run fevers as high as 105 to the point where your gastroenterologist insists you be hospitalized.  This happened several times until I started researching it in the wonderful world of health care social media when I learned that other Crohn’s Disease Humira patients were experiencing the same severe respiratory problems.  The difference was, according to them, when they discontinued the Humira; the respiratory problems soon thereafter disappeared.  Shortly after recovering from my latest hospitalized bout with an epic case of Pneumonia, I asked my gastroenterologist if I could stop the Humira in hopes of alleviating these respiratory problems which were becoming far too frequent and disabling.  He acquiesced but insisted that I soon thereafter start taking the newest Biologic drug called “Cimzia” because he didn’t want me on no possibly “preventative” medication, again, given the aggressive nature of my Crohn’s and due to the fact that I didn’t have much more small bowel to donate to a surgeon.  I agreed.

Cimzia

Literally a few weeks after stopping Humira, my lungs felt normal and it seemed I had gotten back the strength to run, play tennis, chase women, etc.  I didn’t want to start the “Cimzia” until I knew for sure if stopping the Humira made that healthy difference in my lungs.  To truly trust such a conclusion, however, I needed to be methodical in my approach.  I therefore abstained from taking Cimzia until I was sure I had conducted a “controlled experiment.”  I also wasn’t so eager to jump back into the world of Biologics and thus took my time beginning the Cimzia.  After several months going medication “commando,” I was convinced I had isolated the Humira as the probable culprit for my hospital-grade respiratory problems so I was enjoying getting back to playing tennis and chasing women.  I started the Cimzia in and around 2009 after my tennis game had improved and I was again content that I was clueless about women.

Suffice it to say, the medical progression to Cimzia was analogous to changing from Remicade to Humira and it was also injectable so my lifestyle was improving and I was optimistic about my future.  But after only a VERY short while on Cimzia, the unmistakable “Skippy” joint pain and respiratory effects I had experienced while on Humira had come back, and this time they came back in spades.  It was unclear to me if my respiratory problems were caused by the cumulative effects of being on Humira for a few years or if they were triggered by an allergic reaction to the Cimzia, which I had just started.  (Subsequent to my respiratory problems relevant to this Blog Post, in July, 2012, the FDA again turned to YouTube to distribute THIS Video with their Black Box Label Warning for Cimzia due to DEATHS that were occurring from Fungal Lung Infections.)   

The Beginning of BOOP and Severe Lung Problems

It was spring, 2011 and I began to come down with strange spikes of 105 fever which would last but a few hours and go away on its own.  Then I developed Bronchitis which turned into Pneumonia and that began my “Darkness on the Edge of Town” as I had to go to local New Jersey hospital emergency rooms because my breathing became seriously labored (and I lived nearby in NJ).  The first few times I was admitted for tests and to determine the most effective antibiotic to treat my severe respiratory symptoms but soon it appeared I possibly had a strain of Pneumonia that was resistant to drug therapy.  In time, however, one of the antibiotics seemed to work and I was discharged but only to head directly into NYC to see my 30-year Crohn’s Disease doctor who is the most experienced and smartest physician I have ever encountered.  Yes, I had a pulmonary problem but given the respiratory problems associated with the aforementioned Biologics I had taken for my Crohn’s Disease, I knew this current medical fiasco was predicated on, or somehow connected to,  my Crohn’s Disease treatment history.  To that end, he first tested if I was allergic to the Cimzia but I was NOT.  Nevertheless, given my rather extreme and recurrent respiratory problems, I had no choice but to discontinue the use of ALL Biologics.  I was again going medication “commando” with my Crohn’s Disease and my NYC doctor was very worried.

Having recovered from a dangerous case of Pneumonia for which I was hospitalized in NJ several times, one day I walked a few feet to the mail box to pick up my mail and my sudden shortness of breath caught me by surprise and I passed out.  When I awoke, I couldn’t breathe and talk at the same time.  Trying to take a deep breathe was like sucking as hard as possible on a toothpick-sized straw.  I got scared very quickly and called my Internist who recommended I see a certain local respected NJ pulmonologist.  That doctor was kind enough to see me that day and as I struggled to breathe walking only the 50 feet from my car to his office, he merely tested my blood/oxygen levels and deemed me FINE.  I almost had to use sign language to communicate with him as I couldn’t catch my breath from that 50 foot walk but he just smiled and said I must have a heart problem so I should see a Cardiologist. From my perspective, it felt as if I had brought my dry cleaning into the dry cleaning store yet the owner of the dry clothing store was telling me I had to bring my jacket and shirt into the bagel store across the street in order to get it cleaned and pressed.  Let’s just call this doctor the “dry cleaner” because unfortunately he was a recurring character in this 2011 story.

The 2011 BOOP Emergency Room Visit

Luckily a friend of my family is a cardiologist and he saw me immediately after the dry cleaner had somehow misconstrued my simultaneous inability to talk and breathe as the new pulmonary endurance standard for the Olympic athlete.  The cardiologist did not concur with the dry cleaner and was SERIOUSLY CONCERNED about my inability to multi-task in this manner and after confirming my heart was fine he ordered me to go to the emergency room at a prominent NJ hospital very close to where I lived at the time.  This was also the same hospital I had been in and out of with my recurrent respiratory problems and seemingly drug-resistant Pneumonia so everyone knew me but I’m not so sure they were happy to see me as I was very scared and frustrated.  The anxiety which accompanies the inability to breathe is very much like the feeling a 9-year old Little Leaguer gets the first time he collides with the catcher and has the “wind knocked out of him.”  It feels as if you’ll never be able to breathe again and all you can do is wait for your body to “reset” itself.  But at 9 years old, you are unfamiliar with this process so it’s frightening.

At 48 years of age, I felt the same way each time I had to re-visit an emergency room and go through my medical history with a nurse.  My inability to consistently breathe and convert the process to an involuntary bodily function was not “kicking in” and talking only made it worse. Fear of the unknown is as traumatic at 48 as it was at 9 years of age although ice cream seemed to help when I was a kid.   Now it was just successfully flirting with an attractive nurse all the while lying to myself that she’s laughing at my jokes because I’m very funny. But what jokes?  I couldn’t carry on a conversation about my medical history AND also breathe.  Since I’m no Brad Pitt, without those jokes I was again, “running into the catcher.”

Anyone know a good Dry Cleaner?

The ER head physician was also familiar with my case and if memory serves me well, she didn’t know what to do for me since an apparent well-known pulmonologist at the hospital who was the on-call pulmonary specialist that evening had already deemed my lungs as being FINE.  (My luck, this was the dry-cleaner. I was not impressed, or in agreement, with his conclusion and I respectfully made that known from the get-go.  After all, it was counter-intuitive to think I did not have a respiratory problem when I couldn’t breathe and my heart had checked out just fine.)  Thankfully, routine ER flat x-rays showed something strange in my lungs and despite the cost to the hospital of performing a CT Scan on me and the associated blow to the dry cleaner’s ego, they had to perform more diagnostic tests to confirm the dry cleaner’s diagnosis that my respiratory system was just fine and that my inability to breathe was being caused by some other medical problem.  As I also recall, the cardiologist I had seen suggested that I be tested for a Blood Clot in my lungs due to the recurrent Pneumonia I had been dealing with so that test was also conducted.

The Definitive May, 2011 BOOP CT Scan

It was a rather intense and long emergency room visit but when the CT scan results came back I went from being some pain-in-the-ass patient to what they were referring to as a VERY SICK YOUNG MAN.  I knew that because I looked at my patient chart and saw that written in one of the margins.  If I only knew who wrote it I would have demanded an explanation and fired that doctor but I was unable to do so.  Based on the physician personalities I had to deal with, it could have been one of five doctors.  I didn’t think it was very compassionate to write such a mendacious statement which would affect the opinions of all health care professionals who would subsequently read my patient chart.  But I also knew I was perceived to be very sick because they had now formally admitted me to the hospital.  Having finally found some peace and quiet in my own room, I had briefly fallen asleep only to be woken up by a small army of doctors surrounding my bed, which included the infamous dry cleaner.  His face was located within striking distance of my left foot and I felt like doing a “Karate Kid” on his face but an authoritative thoracic surgeon sharpened my focus to eye level when he said he needs to perform lung biopsy surgery on me ASAP while I am still breathing and not on a Ventilator.  Huh?

The Journey to the Correct BOOP Diagnosis Begins

He was very nice and I liked him immediately even though he told me I might have lung cancer.  I’m funny like that; I evaluate “new” people by their sincerity rather than by the content of their dialogue.  I believe in the old adage to only believe what you see and not what you hear.  I also won’t play poker with a guy named “Doc” and I won’t eat at a joint call “Mom’s.”  I look for “tells” that might come in handy later.  Anyway, this thoracic surgeon explained to me that they saw a great deal of damage in my lungs and needed to find out what was going on so they could devise a treatment plan.  Normally they would simply perform an endoscopic-type procedure called a bronchoscopy and go in through my mouth but in this case they needed larger biopsy sizes and the doctor again explained that I might soon be on a ventilator so they needed to formally operate.  That word “ventilator” kept coming up almost as if they were talking about someone else.  All they while, the dry cleaner was nodding his head in approval of everything said by this erudite and experienced thoracic surgeon and I felt like looking at him and saying, “Really?  Where the “f**k” was your diagnosis when I presented at your office not being able to breathe and talk at the same time yet you deemed me fit as a fiddle?”

Patient Engagement kicks in

Instead, my brain woke up and I engaged the thoracic surgeon in an intellectual discussion about how I came into the hospital with Crohn’s Disease but now might have Lung Cancer having never been a smoker?  He then started asking me if I had ever been a coal-miner or if I had lived in certain parts of Ohio and it began to feel like I was being PUNKED.  Back then I was an Entertainment Attorney and a Film Producer and the closest I had come to a coal mine was watching a documentary about one on TV.  He apologized for the grim nature of his questions but he explained that they suspect I had “foreign materials” in my lungs and they had to figure out how that happened.  That’s when I recalled all the Humira Black Box Label Warnings and I knew I needed to somehow get my NYC Crohn’s doctor into the conversation.  When I brought up the possibility of the Crohn’s drugs possibly contributing to whatever lung problem I had, that’s when the dry cleaner decided to speak and he incorrectly, but very confidently, explained that one thing had nothing to do with another.  I just smiled because it beat crying as I knew dealing with this problem was going to be two-fold.  That is, I was going to have to deal with the medical problem AND I was going to have to obtain my medical care from a pulmonologist who understood this connection and I assumed finding that person was going to be difficult to do.

The Lung Biopsy Surgery for BOOP

The lung surgery went fine but the post-operative debriefing with me was surreal.  I did NOT have Lung Cancer but the thoracic surgeon admitted to me that he had seen damage to my lungs he had never seen before and he had been operating for MANY years.  I admired his candor and liked him even more for being straight with me but I was worried.  Again, there were at least 8 doctors surrounding my bed and the conclusion they were prepared to make, subject to clarification of the biopsied parts of my lungs being confirmed by a Pathologist, was that I had a rare form of Pneumonia called “Bronchiolitis Obliterans with Organizing Pneumonia,” better known by its acronym, “B.O.O.P.” Once the word BOOP came out of the doctor’s mouth I could tell by looking at the faces of the other doctors that they had never treated a BOOP patient before and were only familiar with it from a textbook.  My suspicions were confirmed when the dry cleaner said to the bagel store owner (another clueless pulmonologist at my bedside) that 40 mgs of Prednisone for one year should do the trick.  Given my vast experience unsuccessfully taking 40 mgs of Prednisone for my Crohn’s Disease and my substantial difficulties breathing, I remember thinking, “That might work for his dog, but it was not going to work on me.

The Post-Operative Discussion & firing the Dry Cleaner

As the discussion continued and I began to absorb my new reality.  It felt as if my head was swirling around 360 degrees because I am quite familiar with Prednisone and its myriad of side effects from my Crohn’s Disease and being on it for a year would be catastrophic in so many ways.  Further, Prednisone never seemed to work on my Crohn’s Disease, as demonstrated by the high number of surgeries I had to endure, and I was equally perplexed by the relatively low daily dosage of 40 MGs because that dose never worked for me when I had inflammation in my small bowel and here I was not able to breathe and talk at the same time so I asked for an explanation.  The straight-shooting thoracic surgeon explained there was a mathematical formula to figure out the daily dose and then the overall dose would be carefully weaned down in calendar quarters over the course of said one year.  But he then acknowledged that given my medical background, my Crohn’s Disease, an already compromised immune system and an ineffective history with Prednisone, 60 MGs was, in his opinion, the more appropriate daily dose.  He them tempered that opinion with a declarative statement that he would not be “treating” the BOOP but the gentlemen standing around my bed would be and therefore it is their call.

Confronting the Doctors who didn’t LISTEN to me

I thanked the thoracic surgeon but said he was not entirely accurate because I want the dry cleaner out of my room and off my case because he will not be treating me.  That pretty much set the stage for my relationships with the NJ pulmonologists who had seen me to-date and who had completely missed this BOOP diagnosis.  Please understand that missing a diagnosis never bothered me if I felt the doctor was trying to help me.  Even mistakes don’t bother me if the intent was to help me and I am not too badly damaged as a result.  In this instance, however, I was seriously annoyed at the callous manner in which my symptoms were ignored by each of these doctors.  It was as if they knew better but chose to rely on statistics that given my NY/NJ/LA  background, I couldn’t possibly have BOOP or “foreign materials” in my lungs.

But with my history with Crohn’s Disease, Biologics and the FDA’s rather pronounced Black Box Label Warning for Remicade, Humira and Cimzia, they should have been asking me different questions when I first presented at their respective offices and/or in the emergency room with repeated serious bouts with Pneumonia.  In my experience of almost 30 years with an autoimmune disease like Crohn’s, I have built up tremendous credibility with doctors because I know my body and I don’t like being sick.  Yet, because BOOP is so “rare,” these NJ pulminologiosts just assumed I was crazy or somehow seeking attention.  Now I had the opportunity to vent my frustration with them and for the purposes of going into battle with BOOP with a a sound mind I felt it necessary to share my disappointment in them, with them.  Much like a star basketball player “playing” the refs in one game anticipation of his next more important game or series, I was also doing this to ensure that I would be treated differently going forward.

Besides, in my mind I was already at the Lincoln Tunnel on my way to see my trusted NYC Crohn’s doctor so he could get in the loop and recommend a NYC pulmonologist who he could work with in getting me through this most unexpected of nightmares courtesy of the combination of my Crohn’s Disease, Abbott Laboratories, Humira and the FDA.

My NJ Pulmonologist – Personality & Bedside Manner of a Handball

It took a few days to heal from the lung surgery and it was VERY PAINFUL so all I could do was have people make phone calls for me to my NYC doctor since I could barely speak.  As soon as I was strong enough to get into NYC, I met with him and he gave me the name of a female NYC pulmonologist and I made a projected appointment with her while I followed the directions of a different NJ pulmonologist (i.e., the “bagel store” owner from the NJ hospital who also surrounded my hospital bed but only listened to the thoracic surgeon share his findings so we never actually spoke while I was hospitalized).  As I was to find out after consulting more closely with him, he had a passive-aggressive personality and not only did he NOT acknowledge the connection between my Crohn’s, having taken Humira and developing BOOP,  but he had the personality and bedside manner of a handball.  Clearly, I had no palatable options at the time so I tried to stay positive while I battled a possibly life-threatening condition with the hope that my NYC doctors would figure out the best solution to my problem.

Notwithstanding this doctor aggravating me to no end with his lack of confidence in anything I contributed to the conversation, but his patronizing and passive-aggressive style of feigning listening to me was insulting my intelligence.  Yet, I knew there was nothing to do but take the 60 MGs of Prednisone until I was better situated with a NYC pulmonologist who would collaborate with my NYC Crohn’s doctor.   So, I just feigned my interest in his every word but just made sure he never deviated from the 60 MGs of Prednisone protocol.   I was approximately one-month into the 60 mgs of Prednisone regiment when my appointment with the NYC pulmonologist came up.  Coincidentally, this prickly and rude NJ pulmonologist managed to insult my mother so disrespectfully during one of my last appointments that I stopped him from talking about me (she was temporarily out of the room) and respectfully requested that he apologize to my Mom upon her return to the room.  He looked at me like I had just delivered his lunch and was asking for a $100 tip.  Accordingly, he blew me off yet I persisted.  He apologized to her. At that moment of his patronizing apology to my Mom, I put all my trust in the NYC pulmonologist who I hadn’t even met yet.  If my NYC Crohn’s doctor recommended her, she was going to be good enough for me.

The Concept of “The Second Opinion” – it’s like the Seinfeld “Reservation”

Having already made up my mind that I had to change doctors, I told this NJ Pulmonologist  that I was getting a second opinion in NYC and there was a good chance I would stop seeing him because I needed a doctor to work with my NYC Crohn’s doctor and he clearly did not believe in that Crohn’s Disease connection.  I was trying to be as non-confrontational as possible but then he did something I have never seen a doctor do up until then, or since.  He asked me if HE could talk to this NYC pulmonologist BEFORE I SAW or SPOKE TO HER so he could bring her up-to-speed.  His suggestion was so bizarre that it caught me off guard but my instincts formed words and they sounded very much like this:  “Doctor, the whole point of getting a Second Opinion is to seek objective input into a situation that would benefit from ANY additional clarification.  Therefore, any communication between you and this potential new NYC pulmonologist would taint her perspective and put me back at square one under your care, and with all due respect, I no longer want to be under your care.”

Then I smiled as I caught myself since I had revealed that he was actually being territorial about me being his patient.  Did he really care about me or did he just not like to lose patients?  I wished the former but knew it was the latter based on his actions, especially the way in which he treated my Mom.  Then I got annoyed at his passive-aggressive approach and I explained to him the example the comic Jerry Seinfeld uses when describing the concept of the “Reservation.”  I was trying to lighten up the moment so he would drop it but he actually took me serious and said he watched “Seinfeld” and asked, “What was I referring to?”  I just laughed and firmly told him he is NOT to contact this NYC pulmonologist (as I had already given him her name).  He then seemed to admit “defeat” and said I will need to get all the films and reports organized so that the NYC pulmonologist could make the most informed decisions “and that could take a while,” as if he were rooting against me making any progress by going to see a NYC pulmonologist.

I sarcastically told him his “negativity and clear interest in my best medical interests are duly noted” but I had already complied each and every diagnostic test including the films, reports and all the blood work.  He looked at me as if I had just run the 4-minute mile in Clogs.  He apparently was so accustomed to being “in control” that he was amazed a patient actually asserted himself.  I genuinely thanked him for his help up until that point but did tell him that our personalities did not mesh and I need them to, in order to be treated, especially to take on a battle like this one.  I then left him and his God-complex for some Pizza joint as being on 60 MGs of Prednisone for one month is like being pregnant.  You eat, what you want to eat, when you want, and where you want.

Meet my NYC Pulmonologist

I very much liked the NYC Pulmonologist and from the get-go she and my NYC Crohn’s doctor were on the same page regarding the BOOP having a significant tie to my Crohn’s and the Humira or other Biologics.  I tend to see Humira as the primary culprit of my respiratory problems because I was an avid athlete all my life until I started taking Humira.  It was also during the time on Humira that I began to be hospitalized like a 90-year old for what should have been simply bedridden Bronchitis events.  In any event, the only known effective course of treatment for BOOP was the 60 MGs of Prednisone for one year tapered over calendar quarters, so there wasn’t much for this new NYC pulmonologist to do other than monitor me but there was something about her bedside manner and genuine care for my plight which simply made me feel good.  This intangible quality would become incredibly significant because after a few months on the Prednisone my body began to deteriorate even further.

For example, I contracted a serious case of regular Pneumonia for which I had to be hospitalized twice and I also had Pleurisy for which the pain was “off the charts.”  Luckily, I’ve seen a well-respected Pain Management Doctor for several years due to all of my medical maladies and he was able to control my pain.  It wasn’t just the Pleurisy; it was the contrasting feeling that the pressure of a Piano was always on my chest when I tried to breathe and occasionally I would get dagger-like pains in my lungs from the Pleurisy. With the Pleurisy, the daggers became unmanageable, even with medication. The Prednisone’s typical but myriad of side effects also caused extreme joint pain and by the fourth month I had gained 45 pounds so everything was intensified.

The Turning Point – August, 2011

Throughout the entire time, the NYC pulmonologist stayed in close contact with my NYC Crohn’s doctor and my blood count was monitored routinely.  But, when I got regular Pneumonia after four (4) months of being on such a high dose of Prednisone and had to be hospitalized in NYC for the second time (approximately August, 2011), it was clear something had to be changed as my breathing and pain were not getting better yet the side effects from the Prednisone were causing tremendous additional systemic medical problems. One night during that August, 2011 stay at Mt. Sinai Hospital in NYC, while I tried to fend off the Migraines caused by the Prednisone to get some sleep, the NYC pulmonologist stopped by to check up on me.  I was VERY frustrated with my lack of progress battling the BOOP and the massive dose of Prednisone was playing games with my mind.  This prompted me to ask the doctor if there was anything else I should be doing?  I personalized the situation and asked her, what she would do, if she were me?  She replied that the ONLY thing I hadn’t done, which she would do, was obtain the actual Biopsy Slides from the New Jersey Hospital where the lung biopsy was performed so that the Pathology Department at Mt. Sinai Hospital could render a second opinion.

She even offered to make a few phone calls on my behalf to get the ball rolling since my lung power would be exhausted after making just one phone call.  In that regard, she came back the next day with the information I needed and even though it was going to be VERY EXPENSIVE, I had to do it because it didn’t make scientific sense that my body wasn’t responding to the Prednisone given the clear BOOP diagnosis.  Although, some people don’t respond to the steroid treatment and they either die or the BOOP becomes chronic.  I wasn’t crazy about either option but I was intent on doing all I could to help the doctors, help me.  But it was going to take a few months for the actual slides to be transferred and reinterpreted so my actions would not reveal any beneficial information for quite a while.   This is when the doctors brought in a NYC oncologist because they were trying to figure out if a different class of drugs would work on my BOOP, which I was told was a “T-Cell” disease.

Histoplasmosis Test

My 30-year NYC Crohn’s doctor also had me tested for the often fatal Lung Fungal Infection, Histoplasmosis, just to ensure that EVERYTHING possible was being tried to help me.  It turned out to be a simple Urine Test but it took my doctor quite a while to figure that out from a very challenging case he had a year before mine.  This is why I am always so open about my medical challenges as Crohn’s Disease and its treatments can cause some hard to identify medical problems and I want doctors and patients to LEARN from all I must go through.  To that end, I am thankful to that patient who essentially “taught” my Crohn’s doctor what to look for in case of Histoplasmosis.  Thankfully, he survived and was diagnosed and treated in time.

My foray into Chemotherapy and Cytoxan w/ the RIGHT Doctors

Since my NYC Crohn’s doctor knew me so well for 30 years, it was his decision to discontinue and wean me off the Prednisone as fast as was medically safe to do so.  But at the same time he organized a “sit-down” with the NYC pulmonologist and the oncologist and they decided to try a several month course of monthly infusions of a chemotherapy drug, “Cytoxan.”  While the mere word “oncologist” scared me, I also very much liked this oncologist and I also understood why they were considering the Cytoxan after they explained the “T-Cell” analogy to me.  Since I trusted the three (3) doctors with my life, there was no decision for me to make as they made it for me.  I think I learned during the 2011 BOOP ordeal that the best advocate a patient can be for him or herself is in selecting the “right” doctors for him or her.  That doesn’t always mean the “best” doctors but it should always be the doctors best suited to the patient/person and to the task at hand.

I was so sick that I needed some degree of autonomy since I was too ill to be involved on a day-to-basis.  The combination of a Crohn’s Disease expert who knew me for almost 30 years, a compassionate Pulmonologist who understood the systemic connection between my Crohn’s and the BOOP and a very experienced Oncologist who also had worked closely with the two (2) other doctors rounded out a medical team whose sum was much larger than its parts.  I had no time to search for the “best;” I only had the energy to find a core of caring and creative doctors who would listen to me and observe how I responded to each and every treatment. Having achieved that, my work was completed.  I was in their hands and that made my responsibilities going forward very simple.  I just had to be positive and “open” to healing.   The only concern they had was of the unknown side effects the Cytoxan might have on my Crohn’s Disease but since I couldn’t breathe, was in tremendous pain and was having difficulties staying positive about my future, I just did what I was told.  “Damn the Torpedoes” as Tom Petty might have told me.  I then had the first Cytoxan infusion while hospitalized at Mt. Sinai Hospital and was released a few days later once the Pneumonia and Pleurisy were improving.

Perspective – A Patient Tool for Healing

I was soon off the Prednisone and had my second Cytoxan infusion in the office of the NYC oncologist.  He also tested my blood count regularly and I was starting to improve.  Before the second infusion of Cytoxan, I had to mentally map out a plan to try and breathe if I was able to get off the couch and walk 15 feet to the kitchen.  However, a week or so after the second infusion of Cytoxan, breathing wasn’t always on my mind because it was gradually getting back to its “new normal.”  This got even better a week or so after the 3rd infusion but then I started to get severe Crohn’s Disease pain and actually had a dangerous small bowel obstruction for which I again had to be hospitalized at Mt. Sinai Hospital in NYC.  This is when I knew my “perspective” had to be altered because I had dealt with MANY Crohn’s Disease situations and will likely have to deal with many more in my lifetime but not being able to breathe was something which could have killed me so I tried to look at my situation as a lucky one, albeit with some Crohn’s complications.

Dueling BOOP Pathology Reports

I don’t recall if this hospitalization at Mt. Sinai was after the 3rd or 4th infusion of the Cytoxan but it was during this hospitalization that the Pathology Department at Mt. Sinai Hospital had finally received the Lung Biopsy specimens/slides and had issued a written pathology report.  On the day I was to get the next Cytoxan infusion, which would have been my 4th or 5th, the NYC doctors came into see me and told me they had to discontinue the Cytoxan because the Pathologists at Mt. Sinai Hospital did not entirely agree with the opinion of the Pathology Department at the New Jersey Hospital which had initially diagnosed me with BOOP.  More specifically, and it really was a hyper-sensitive analysis, the pathologists at Mt. Sinai Hospital agreed that there were nodules or particles of BOOP in my lungs but not enough to mathematically classify my condition “as BOOP.”

On the one hand, me and my doctors were not very “affected” by this differing analysis because the administration of the Cytoxan had CLEARLY gotten my lungs better when the traditional form of treatment for BOOP (i.e., 60 MGs of Prednisone for 1 year) was ineffective and caused me so many other serious systematic medical problems for which I had to be hospitalized.  But not knowing exactly how far I had recovered from the BOOP, especially since it can be chronic and come back, as it has now in 2013, I wanted at least one more infusion of Cytoxan but the NYC doctors concurred in their opposition given the new Mt. Sinai Hospital Pathology Report, my obvious improvement from the Cytoxan and with all due consideration and respect for the potential toxicity of the Cytoxan such that giving me any more than just the right amount would be increasing the risk of systemic harm to my body.

Let me put it this way:  You know you have a complicated medical problem when you engage very smart and well-intended physicians into a discussion where you are essentially begging them to give you MORE chemotherapy because you want to make sure you fully treat a very dangerous lung condition so that it doesn’t come back.  They listened, I listened, but in the end it was their decision and my breathing was SO MUCH BETTER that I  mentally embraced their decision and start focusing on my Crohn’s Disease small bowel obstruction.  At that exact moment in time, the episode of BOOP, or whatever it was, was over in my mind and I was transferred to the floor at Mt. Sinai Hospital which was exclusively for Crohn’s, Colitis and Inflammatory Bowel Disease (“IBD”) patients.  Even without the actual physical transfer from a pulmonary floor at Mt. Sinai Hospital to a Crohn’s Disease/Inflammatory Bowel Disease floor, I had to make that “transition” in my mind because now I had to contend with some very serious Crohn’s Disease issues and I wasn’t going to be given any sympathy just because I had just somehow navigated my way out of a very dangerous Lung Condition thanks to the knowledge, talent, experience and sheer determination of three (3) very smart physicians.  This was approximately November, 2011.

Medical Background Epilogue

The BOOP and my Lungs were manageable although the capacity of my lungs was clearly limited or damaged either by the episode of BOOP, cumulative damage from the BOOP and/or damage from taking the chemotherapy drug, Cytoxan.  The Crohn’s Disease problems got much worse and I was still going medication “commando” as there was no medication I could take to treat the Crohn’s now that all Biologics were off the table for me.  Long story short, after MANY diagnostic tests in close consultation with my NYC Crohn’s doctor, we found a new Crohn’s Disease surgeon who looked at all the tests, was not at all intimidated by the complexity of my case and he used the tests to map out a surgical strategy that would judiciously treat the diseased parts of my small bowel and also excise all adhesions that were adding to the small bowel obstructions.  It, just like the BOOP episode, was VERY complicated but this new surgeon operated on me in June, 2012, when I stayed at Mt. Sinai Hospital for Seventeen (17) days.   Most people have 21 feet or so of their small bowel but after this last 2012 surgery, I now have only 6 ½ feet.  That “short bowel syndrome,”  in and of itself, causes many absorption and lifestyle challenges but at least I can still eat and I don’t have any sort of stoma (or “bag” for those unfamiliar with the technical terms for such things.)

My NYC Crohn’s doctor thinks the Crohn’s Disease issues may have been exacerbated by the 3-5 monthly infusions of the Cytoxan I took to “beat the BOOP” but he doesn’t think it caused it.  We’ll never know.  However, two (2) casualties as a result of taking the Cytoxan are that my Testosterone Levels decreased to the point where they were almost microscopic.  I had to take Testosterone supplements to help boost it back up as I was experiencing EXTREME FATIGUE and a variety of “man problems.” It is still VERY LOW and barely falls within the “range” of where it should be whenever I get a blood test but all “man issues” are no longer problems.  I can’t afford the Testosterone Supplement so for now, and the foreseeable future, that is my reality.   The other casualty is that my stamina when trying to merely walk on a treadmill or taking a walk in the sun has been greatly diminished.  In fact, a few months ago I tried walking very slowly on a treadmill and I passed out and that brings us back to the road to my Nightmare March 26, 2013 Emergency Room Experience at a New Jersey Hospital as: “The BOOP is back and it’s stone cold sober as a matter of fact.”

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MAW PPP Dec 21 2012

Tina Fey HILARIOUS Drug Parody Commerical – Is FDA watching?

 

Tina Fey / SNL – Drug Parody Video – “Annuale”

I made reference to this CLASSIC video last night in my Speech before the distinguished attendees at Health 2.0 NYC to point out the absurdity of TV Drug commercials aimed directly at Patients.  This Hilarious 2-minute Parody captures why these advertisements to the captive audiences of television watchers are devoid of any credibility.  The beginning video images of these ads for drugs like Humira, Lyrica and the usual suspects of erectile dysfunction drugs first appear to sell “Hope” to desperate patients yet if the viewer LISTENS CAREFULLY the legal disclaimers about possible side effects all but negate that Hope.

FDA – Analog Regulations thwarting Pharma Digital Opportunities

I understand the FDA has a difficult task ahead of it in trying to regulate Pharma promotional efforts in the “Digital” world of Social Media.  But as this parody so eloquently points out, permitting pharmaceutical television ads targeted directly at passive Patients is a joke because broadcast television, in the context of Pharma Promotion, is NOW an “Analog” technique that only serves to thwart Pharma’s digital opportunities in health care social media.  The voice-over warnings in these analog TV drug commercials dilute the possible efficacy of the drugs.  However, we live in a society where we all have the attention-spans of mosquitoes such that the opening video images of these television commercials are manipulative as they make such an indelible impression that the patient is actually done an injustice by being exposed to such duplicitous promotional efforts.

FDA/Pharma MUST Embrace the Digital World – like the Entertainment Industries

I don’t blame Pharma for these border-line deceitful commercials as they are only doing what they are permitted to do under ambiguous piece-meal FDA “regulations” which serve no purpose other than to insure the FDA is not sued for encroaching upon Pharma’s 1st Amendment-based protected “commercial speech.”  But the FDA, if they truly intend to LEAD and REGULATE, needs to re-envision the new Digital world in which we live where “Patient Engagement” in Social Media is to Pharma what the mp3 file was to the Record industry.  The Record industry initially had problems regulating these digital downloadable files but eventually they figured it out.  Hollywood followed their lead and enacted various measures to encourage the growth of digital opportunities while simultaneously controlling piracy. The running joke in Hollywood at the time was that the only reason they weren’t as badly impacted by the proliferation of the Web and Peer-to-Peer File Sharing sites as the Record industry was because back then it took much longer to download Video Movie files.  That changed quickly, however, and Hollywood learned from their entertainment industry colleagues in the Record industry.

The FDA and Pharma need to LEARN from these examples set by these two (2) hyper-sensitive high-profile  industries which are just as much a part of daily life in the United States as Patients taking drugs to combat serious medical ailments.  Moreover, it’s only going to get more challenging with the almost daily proliferation of digital opportunities when the FDA and Pharma must embrace mobile health, electronic health and health care social media into the practice of medicine and the businesses of Healthcare and Pharma.  Therefore, please take the 2-minutes to watch this video as its humor is thought-provoking and hopefully instructive to the FDA and Pharma where the word “Promotion” needs to be transformed into meaning “Patient Engagement.”

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MAW PPP Banner Jan 18 2013

 

“Crohn’s Disease Warrior Patrol” (“CDWP”) T-shirts NOW Available FOR Purchase!

 

Hands CDWP Tshirt FRONT JPEG Jan 22 2013

While the formal Medstartr.com CDWP” T-shirt Fundraising Campaign won’t start until next week (i.e., approx. Monday, February 18, 2013), you can purchase these beautiful CDWP T-shirts NOW for $25.00 EACH (that includes all Shipping and Handling charges for orders shipped within the 48 Continental United States.)  For International folks, there is a $12.00 additional Shipping Fee for the 1st T-shirt purchased BACK of CDWP Tshirt JPEG Jan 22 2013plus $2.00 for each additional shirt shipped in the same International Order.

I trust you understand we are trying to keep all costs as low as possible to ensure that each purchase is essentially a “Donation” to this Non-Profit venture which has applied for Charitable Foundation 501 C 3 Tax Exempt Status with the IRS but such coveted designation can take approximately 4-6 months to achieve.  This is why we are selling T-shirts in the interim to help defray the enormous start-up costs we must incur.  In that regard, your help at this early stage of the CDWP’s development is GREATLY APPRECIATED.

By now, I’m sure you are familiar with the CDWP and that it is premised on the simple concept of “Patients helping other Patients is the best Medicine.”  Accordingly, by purchasing CDWP T-shirts you will become part of the Global “Health-Care-Social-Media”-powered “Patient Movement.”  More specifically, you will be helping Crohn’s Disease, Colitis and Inflammatory Bowel Disease patients all over the world.   This Unique, but Simple, “Warrior Patient Approach” of veteran or Warrior Crohn’s, Colitis and IBD patients helping the newly diagnosed or IBD “Patients-in-Need” is explained IN DETAIL in the 10-minute Video below (which is an integral part of the MedStartr.com Proposal).  So please try and watch as much of the Video as possible because I have been told it most accurately conveys the potential severity of these incurable, autoimmune diseases and the logic behind using experienced patients to help newer patients cope with these difficult diseases.

To purchase T-shirts, simply click-thru the hyper-linked “Order Form” below and complete it with the specifics of your purchase then click on “SUBMIT” at the bottom of the “Order Form” and then kindly pay for the T-shirt order via Pay Pal to the CDWP’s PayPal account @ CrohnsDiseaseWarriorPatrol@gmail.com.  I have pasted a hyper-linked PayPal image below to help facilitate that process.  Once I receive the Order Form and verify payment, I will ship the T-shirts to you.  Thank you for your kind consideration and support.

 

 

CDWP T-Shirt Order Form

Pay Pal Image No 2 for Blog Post February 15 2013

 

 

 

 

 

 

Tumblr Vimeo Jpeg February 14 2013

http://vimeo.com/59465582 

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

Cropped CDWP Pic Dec 31 2012

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

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

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

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

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

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

My Hospital Visit this week which galvanized my Determination

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

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

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

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

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

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

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

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

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

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

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

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MAW PPP Banner Dec 15 2012

 

 

Announcing “Crohn’s Disease Warrior Patrol”

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

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

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

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

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

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

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

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

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

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

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

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

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

I thank you for your interest and support.