Tag Archives: Humira

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.

Partnership with Patients Summit & “Humira” position

Thanks to being awarded a “Travel Scholarship” from the Society for Participatory Medicine based on my contributions to the world of Health Care Social Media, I will be attending the “Partnership with Patients Summit” in Kansas City, Missouri from Friday, Sept 21, 2012 through Sunday, September 23, 2012.  I am honored and humbled by receiving such an Award and I look forward to sharing all that I see and hear by reporting about it on my Blog upon my return.  I intend to bring my Flip HD Camera and trusted Tripod so that I can record daily summaries of the day’s events.

On an unrelated note, yesterday I recorded a One (1) minute Video entitled: “The Drug “Humira” – Miracle Drug or Snake Oil?” utilizing the new wonderful technology from “Vsnap.com.”  Several people presently taking Humira, and getting great results with it, seemed to take offense at my characterization of Humira as “Snake Oil” or as an ineffective drug for Crohn’s Disease.  Granted, the title of the video is rather “dramatic,” but the content of the video is simply MY opinion based on MY experiences and on the experiences of MANY Crohn’s Patients who have sought me out to commiserate.

MY issues with Humira are numerous, especially in light of the drug being approved last week by The European Union for treatment of Severe Crohn’s Disease.  For the purposes of simplicity, I am listing some of them below.  That said, I acknowledge that Humira DOES WORK in treating Crohn’s Disease BUT I am concerned that longer term use of the drug (such as in MY case) will reveal many more negative outcomes and dangerous side effects than are reflected in the sample sizes for which Abbott Laboratories, the manufacturer of Humira, received global approval.

As I was one of the early patients taking Anti-TNF Agent drugs who had to quickly “graduate” from Remicade to Humira and then to Cimzia, I am concerned that the almost fatal (and often on-going) side effects I experienced might occur more frequently than first thought, particularly as these drugs are taken by patients for longer periods of time.  Accordingly, please understand that I write and record about this Humira issue because I want to keep Researchers and Pharmaceutical Companies on their toes, as the pressing need of patients doesn’t always align up with the profit-motives of Pharmaceutical Companies.  Moreover, I feel compelled to speak out due to the misleading Humira television commercials Abbott Laboratories targets at a captive patient audience desperate to get their lives back from these formidable autoimmune diseases.  Some would say I am a cynic but others would conclude I am trying to be realistic.  Regardless, please trust that, in the immortal words of Singer/Songwriter Elvis Costello, “My Aim is True.”

  1. How could ONE (1) Drug such as Humira claim to be “THE” effective Treatment drug in SIX (6) Different autoimmune serious diseases such as:  Moderate to Severe Rheumatoid Arthritis; Moderate to Severe Chronic Plaque Psoriasis; Moderate to Severe Crohn’s Disease; Ankylosing Spondylitis; Psoriatic Arthritis; and Moderate to Severe Polyarticular Juvenile Idiopathic Arthritis ?
  2. The drug is marketed in the United States to patients via television commercials which focus on “regaining back a certain lifestyle” very much like the manner in which “Erectile Dysfunction” drugs are marketed.  The very serious medical disclaimers are read aloud in a quick and monotone fashion, which I imagine is legally sufficient, but I contend is morally INSUFFICIENT because the commercial then focuses the patient’s eye on the VIDEO “wants” of patients (myself included) instead of the patient’s NEEDS.  Given the increasing number of ineffective usages of Humira (I am extrapolating based on the overall increasing number of patients using Humira) and the severity of the side effect cases, shouldn’t these television advertisements be regulated more carefully so that they better represent the risks associated with taking Humira?
  3. Why is Humira advertised DIRECTLY to patients?  As a Crohn’s Disease patient with NO CHOICE, having run out of drugs to take to treat my Crohn’s and keep me out of the hospital, and thus desperate for a cure or even a treatment that gives me back some semblance of a normal lifestyle, an argument can be made that Abbott Laboratories, the manufacturers of Humira, are manipulating a captive audience.   When you go and ask your doctor to put you on Humira based on seeing these television commercials, it is likely you won’t “hear” the medical disclaimers being carefully told to you by your doctor because all you can “see” is your old “active self” doing the things you love, when you want to do them.  I have a problem with this type of manipulation when the outcome “COULD” be the exact opposite or even worse.
  4. Since Humira DOES WORK in MANY CROHN’S DISEASE CASES, it pains me to write about these issues and in doing so possibly dashing the hopes of these hopeful patients, but someone needs to speak out because I know MANY Crohn’s Disease doctors who are very frustrated and disappointed with both the long-term success of these Anti-TNF Agent drugs and their intense and pervasive side effects.  As for the patients taking Humira now, or considering doing so because they have no choice, they should simply view my comments as a Cautionary Tale; nothing more; nothing less.  But because Crohn’s Disease is not a “sexy” disease, I am so worried that research money will not be adequate to proceed further and therefore patients will have to settle for treatment drugs based on Anti-TNF Agent ideology.  I hope my fellow Crohn’s Disease patients understand my intentions in this regard.

What Happened to Me b/c of Humira

If you’ve read my Blog or followed me on Twitter, you are probably familiar with what happened to me after taking Humira and Cimzia for a significant period of time.  In short, they worked for a while but then I developed severe Respiratory and severe Joint Pain side effects which forced me to stop taking them.  A few months later I began to come down with intermittent fevers of 105 often accompanied by Bronchitis or Pneumonia.  Eventually, I became so sick that I had to be hospitalized for what the doctors then thought was drug-resistant Pneumonia.  After several hospitalizations, I developed the additional symptom of severe Shortness of Breath and that prompted a CT Scan. The CT Scan showed accumulated severe damage to my lungs which the Thoracic Surgeon thought was consistent with Lung Cancer even though I have been a non-smoker my entire life of 49 years.  They performed a surgical biopsy because they wanted to obtain samples of my lung while “I was still able to breathe on my own,” that’s how grave a situation they thought I was in.  Thankfully, I did not have Lung Cancer but instead had an often fatal Lung Condition called Bronchiolitis Obliterans with Organizing Pneumonia or “BOOP.”

My Crohn’s doctors recognized the connection of the BOOP to the Anti-TNF Agent drugs Humira and Cimzia and I began treatment for the BOOP with 60 mgs of Prednisone daily with the intent to eventually taper down over the course of ONE (1) year.  That is the standard, and ONLY successful, treatment for BOOP.  However, after 4 months or so, I still had severe shortness of breath and had gained 55 pounds.  My Crohn’s doctor discontinued the Prednisone and, after consulting with several other doctors, put me on the Chemotherapy drug, Cytoxan.  The Cytoxan worked on the BOOP after a few monthly infusions but then my Crohn’s Disease started to act up after being in remission for several years.  A few months later my Crohn’s became so active I was forced to have my 20th extensive intestional surgery to address it.  I was in the hospital for 17 days and in addition to the Crohn’s surgery, I had to deal with several other SERIOUS complications from the treatment for BOOP, which resulted from the Anti-TNF Agent drugs (e.g. Heart and Testosterone issues).

Since taking the Anti-TNF Agent drugs, I’ve also noticed that run-of-the-mill Seasonal Allergies seem to trigger such an exaggerated immune system response that they CRIPPLE ME.  That might sound strange emanating from typical  watery eyes, sinus pain and the sniffles but I get so lethargic it is as if I’m in the 14th round of a 15th round Boxing Match with boxing legend Mike Tyson and I am doing all I can just to stand on my two (2) feet.  Additionally, this lethargic feeling is often accompanied by Migraine Headaches so severe I can’t move an inch once I find a spot in the bedroom where I achieve total darkness and quiet.  I experienced much less severe versions of these symptoms once I was diagnosed with Crohn’s Disease but after I began taking Remicade, Humira and then Cimzia, these unpredictable “episodes” became appreciably worse and ultimately, Disabling.

Again, mine is a cautionary tale but I’m not that lucky or unlucky to be that 1 in 10,000 or so patients who gets BOOP from Humira.  I have had Crohn’s Disease for almost 30 years and I can honestly say that my illness is MUCH MORE PERVASIVE since taking the Anti-TNF Agent drugs.  It’s as if I made a deal with the devil to get Five (5) good years at the expense of a lifetime of bizarre, painful, disabling and increasingly serious and expensive side effects.  There you have it.  I hope you do GREAT on Humira.  But if you run into problems, please feel free to contact me, after 1st contacting your doctor. Good health to all.

If Crohn’s Disease don’t getcha, the drugs or the side effects will

Recently, I tweeted via @HospitalPatient:

Battling Crohn’s Disease is like trying 2 survive “The Perfect Storm” in a Raft. If the Disease don’t getcha’, the drugs or the side effects will!

The Tweet was re-tweeted by MANY people so I guess I accidentally stumbled into explaining what it feels like to live with, and manage, a chronic illness like Crohn’s Disease.  More importantly, this Tweet can be true of so many chronic and autoimmune illnesses.  But when you LOOK “okay” or “more than okay,” healthy people are “suspect.”  They may not say this at dinner when you have a pleasant evening as friends or as “friends of friends,” but they damn sure say it to their spouse before going to sleep and reviewing the evening’s events as I know I would, if I weren’t intimately familiar with Crohn’s Disease for almost thirty (30) years.  More specifically, they might ask:  How could someone so smart and seemingly healthy-looking have so many medical problems?

I can’t speak for the many folks who battle other autoimmune chronic illnesses but with Crohn’s Disease and other “Inflammatory Bowel Diseases” (i.e. “IBD”), the progression from misdiagnosis to proper diagnosis to trying to manage it goes something like this based on MY personal experiences (and please pardon the “Vertical Bullet Points” but I think the progression of the Disease is more easily understood this way):

  • 20 years of age – You suddenly have severe and debilitating abdominal cramping, extreme and inexplicable lethargy and crippling knee pain coupled with doubts from loved ones who think you’re a hypochondriac despite you always being an energetic and insatiable athlete.  In college, these symptoms were synonymous with proud hangovers after memorable nights but for some reason you were always in the bathroom longer than everyone else.  The cramping was also so intense it brought tears to your eyes as you prayed for it to stop.  You switched to Vodka ‘cause it’s clear and uncomplicated, thinking that’d do the trick. Ergo, the need for Graduate School.
  • A few misdiagnoses by well-intended local doctors accompanied by painful experiments with various antibiotics only make the aforementioned symptoms worse.  Colds turn into Bronchitis more quickly and you become increasingly familiar with bathrooms and Health Insurance Claims forms.
  • The Journey to the Road to Proper Diagnosis might include a bizarre reaction to having all four (4) Wisdom Teeth pulled at one time.  Sure, your mouth blows up for a few days afterwards but when this continues to happen for 6 months after the dental surgery, there’s something wrong.  Seasonal allergies begin to make you so weak that you fall asleep during Sunday Family Dinner.  Your Dad yells at you for having bad manners but his words come out in slow motion because you are so “out of it.”  You try every possible over-the-counter allergy medication but nothing seems to work like it does for your friends or how it’s supposed to on the television commercials.  All you want to do is sleep and crawl into the fetal position to battle the abdominal cramps and repeat trips to the bathroom.
  • Some world renown expert suggests putting you in a hyperbaric chamber to recover from the dental surgery but everyone in your family thinks he’s nuts.  You’re beginning to feel ostracized from those you love because no one seems to understand the physical pain you are in. You learn how to spell “G-A-S-T-R-O-E-N-T-E-R-O-L-O-G-I-S-T.”  But he or she diagnoses you with what is tantamount to a “bad stomach” or “IBS,” Irritable Bowel Syndrome.  Still, your symptoms don’t change.
  • 24 years of age –  Trying to brush off what those around you refer to as “psychological,” you begin your career at some low-level office job.  One day they celebrate a colleague’s birthday with Flavored Popcorn.  You indulge even though popcorn doesn’t exactly “agree with you.”  30 minutes later the intense abdominal cramps start and this time they are increasing in intensity almost as if you are in child labor.  You go to the office bathroom so no one sees you grimace in pain as you try to manage the cramps which now make you feel like your stomach might literally explode.
  • Everything is foggy and you are in an ambulance on the way to a local hospital.   Someone at your job found you passed out on the bathroom floor.  The hospital admits you and loads you up on drugs to dull the pain.  Your family rushes to your aid feeling terrible that it wasn’t psychological after all.
  • After numerous painful and awkward diagnostic tests, the Gastroenterologist tells you and your Mom that you have a chronic, autoimmune and incurable digestive illness called “Crohn’s Disease.”  He gives you a pamphlet from the “Crohn’s & Colitis Foundation” which explains the symptoms. You read the list aloud and it’s like someone summarized your last year or so and called it “Crohn’s Disease.”  At first, it’s obviously bad news but strangely it becomes incredibly validating because when your family reads it, they no longer see you as the “Complainer.”  They see you as a young adult who now suffers from what could be a devastating disease.  The good news is that Crohn’s is a “broad spectrum” disease so things may not be so bad.
  • 25 years of age1988 – Your Mom gets you an appointment with “the best of the best” doctors who specialize in Crohn’s Disease.  He becomes your doctor for the next 30 years.  At first, he does whatever he could to stave off surgery but your “type” of Crohn’s Disease is “obstructive” and aggressive.  After numerous hospitalizations for intravenous medications, you soon require surgery to alleviate a life-threatening small bowel obstruction.  What about the broad spectrum?  For you, it was a broad spectrum of bullshit.
  • 1989 – In the early years with the disease, you go to business and law school but the first year of law school includes several hospitalizations and three (3) more surgeries.  The Dean calls you personally to respectfully ask you to take the year off to focus on your health.  Besides, you can’t pass the 1st year of law school without formally listening to the class lectures.  You ask for the cassettes.  The Dean is silent.  You do very well in law school and upon graduation you receive the 1st “Dean’s Award” for Unique and Outstanding contributions to the school and the student community.
  • 29 years of age1992 – You start to work and advance in your career but it seems that every step forward is accompanied by 3 steps back due to more hospitalizations and more surgeries. You only lose inches of small bowel during each surgery but with Crohn’s Disease, surgery begets more surgery.  Surgery also causes scar tissue or “adhesions” and eventually they grow to block your small bowel and you require even more surgery to fix this “mechanical” byproduct from a prior surgery.  The hospitalizations and surgeries start to pile up as do the co-payments.  Doing your annual tax return becomes a royal pain in the ass.
  • You form unique close friendships because you learn so much from what your friends try to do for you, when you can’t do for yourself.  By example, you learn how to be a great friend.  It takes a while to sink in, but you realize you’re lucky, but not in a materialistic manner. For you, friendships are the currency of life.  You become wise as the disease is simultaneously making you poor.  Employment decisions are increasingly influenced by the healthcare coverage offered.
  • 36 years of age1999 – You try to keep up athletically but your good intentions of shaping up wind up necessitating spine fusion surgery to repair a ruptured disc which is painfully misdiagnosed for six (6) months.  Again, many around you doubt your pain while lazy doctors toss your “negative” MRI films on the floor with proclamations that you are “making it up” to seek attention and drugs.  You cry at their insensitivity but it doesn’t stop you from getting answers, for such stifling back pain cannot be normal.  Sure enough, two (2) “discograms” confirm a ruptured disc and spine-fusion is the ONLY answer.  Numerous abdominal surgeries have made your back weak and Crohn’s has again caused expensive misery.  However, it’s also validation once again and now you know to NEVER doubt your body because you simply can’t ever underestimate the reach of what will be your life-long nemesis, Crohn’s Disease.
  • 1999 – 2001 - Your health insurance company only covers back surgeries emanating from MRI diagnoses; they view discograms as antiquated despite their sole existence to diagnose what MRI’s can’t.  Your folks float you the money for the back surgery and you appeal the health insurance company’s decision.  You lose; you appeal again.  You finally win and get awarded attorney’s fees.  You write a Book to help others learn from your experiences called, “Confessions of a Professional Hospital Patient.”  It gets you on NBC’s “Today Show.”  You date your physical therapist.  Life is returning to normal.
  • Your trusted Crohn’s Disease doctor starts trying varies medications called “Biologics” to slow the progress of your disease and each comes with side effects that would scare Dr. Kevorkian.  The cramping, myriad of bathroom issues and extreme lethargy goes away but soon anaphylactic drug reactions occur, stifling joint pain comes on like the randomness of a Voodoo Doll being pricked by the driver you accidentally cut off on the 405 out in Los Angeles.  Yes, your Crohn’s Disease is in check, but you begin to come down with increasingly serious cases of Bronchitis and Pneumonia.  You are hospitalized so many times, for so many things, you must chronicle it all in a Word document because no one would ever believe you without specific dates and details.
  • You work for yourself because no employer would understand and accept the randomness and pervasive effects of this chronic “digestive” disease.  The autoimmune aspects become more and more expansive and unpredictable as you age.  Due to the help of friends and family, you have some success and get back into the fast lane of merely trying to reach your professional potential.  You make Movies and practice Entertainment Law and fly back and forth between New Jersey and Los Angeles.  Life is good.   You remember what a former girlfriend told you and try to live by it: “Michael, your Crohn’s Disease will never come between us; but how you handle it will.”
  • 2005 – You move to Los Angeles, California, in part to more quickly pursue your professional potential for fear of being stymied at any moment by your disease, but also to prove to yourself that you can be independent of the disease, doctors and hospitals you grew accustomed to in New York and New Jersey.  It works for a while and Santa Monica, CA is heaven.  You meet some new “old friends.”  The hospitalizations still occur but they seem to be caused more by disease complications and side effects from treatment medications than by the disease itself.  For most people, that would be a bummer.  For you, it’s a vacation.
  • 2008 - Life marches on and soon your Dad passes away.  You take solace in the fact that at least he saw you happy when he came out to visit with your Mom and rode around Los Angeles with you in a convertible smiling and retelling stories about the last time he was out in “Cali” just prior to being drafted for the Korean War.  You head back to New Jersey to mourn his death and celebrate his life, but returning to Santa Monica, CA after the “Shiva” process starts a downward disease progression that will change your life, yet again.
  • You aren’t even sure it is safe to get on the flight back to Los Angeles because the pain in your gut is so severe but you figure it’s just the mourning for the passing of your Dad.   You make it back to Santa Monica, CA and unbeknownst to you; your small bowel is slowly being strangulated by some surgical material from a prior abdominal incisional hernia surgery. You call your West Coast Crohn’s doctor and make an appointment for the next day but you half-kidding tell him you may not make it through the night.  It’s probably a overly dramatic statement but after so many years of doing battle, you’d come to know your adversary like veteran top-ranked tennis pros facing off against each other for the 10th time at the US Open in Flushing Meadows, NY.
  • At 3 AM you wake up and feel like Marlon Brando’s “Vito Corleone” in “The Godfather” when he rolled over and died in his vegetable patch.  Your Santa Monica apartment is devoid of said vegetable patch so you settle for stumbling into some stand-up lamps and collapse.  You call an ambulance but while waiting assume you perforated your intestine, the final knock-out punch from your Crohn’s Disease.  You are a goner if the ambulance doesn’t arrive FAST.
  • 45 years of age 2008 – Not so FAST.  The ambulance arrives as if it were E-ZPass on the tollbooths saving James Caan’s “Sonny Corleone” character so he could hit the accelerator and drive on through the machine gun fire to live to fight another day, perhaps in “Godfather Part Two.” But it takes two (2) major surgeries and several hospitalizations to repair your strangulated small bowel. More adhesions arise and you also begin to experience “comprehensive” effects of being on those new “Biologics” Crohn’s Disease drugs called “Anti-TNF Agents” such as Remicade, Humira and Cimzia. You try to work but you either wind up in restaurant bathrooms for ridiculous periods of time (which ironically is often acceptable in LA because some wacky colleagues think you are using the bathroom for entirely different reasons!) or you are so weak some days you can’t get out of bed.  Since your work is also your social life, you have time to carve out a new path and begin sharing your experiences on various Health Care Social Media platforms to try and help others.
  • Just as you get accustomed to your role as a healthcare commentator, you have more to comment about as your small bowel again gets blocked by adhesions. Trying to avoid another surgery and numerous hospitalizations, you go on a “Liquids and Lollipops” diet.  Your ingenuity goes only so far and you wind up driving from Santa Monica, CA to Rochester, MN to be operated on at The Mayo Clinic.  It’s the summer and you think a drive across the country will do you good and also quench your desire to finally witness a harmless, picturesque tornado in the Plains that is visible from the highway but safely far away in vacant farmland.  It’s called making lemonade out of lemons.  The drive is beautiful but the unrelenting pain in your gut keeps you in some nice small Iowa highway-side town for three (3) days at a Best Western as the pain is so bad you can’t drive.  With nothing to do but lie in bed, watch cable television and wait for Raquel Welch or Angie Dickinson to knock on your door, you feel like an old-fashioned bank robber held up in some small safe town waiting for the Sheriff to pass through.  Having Crohn’s Disease will certainly let your mind wander.
  • 2010 – There was no tornado but you’re proud you keep making the best of the situation as the drive is something you’ll never forget; so was your Six-Week stay at The Mayo Clinic.  The adhesion surgery went well but you also had some other unrelated but very specific severe pain in and around your abdominal wall.  Unfortunately, you came across a surgeon who thought you were nuts and he was God.  He was mistaken on both counts.  You didn’t flinch and eventually got treated by a Mayo Clinic Gastroenterologist while recovering from the adhesion surgery.  While the doctors had the best of intentions and this other problem was palpable to the touch and visible as some sort of growth emanating from your abdomen, they wouldn’t listen to you when they diagnosed the pain as a flare-up of your Crohn’s and ordered you to begin an intensive course of intravenous steroids.
  • You respectfully refused because you learned a long time ago what was, and what was NOT, a direct body blow from your Crohn’s.  This was surely mechanical but nobody would listen to an experienced Crohn’s Disease patient who had never been wrong about his body.  You were then kicked out of The Mayo Clinic for refusing to follow their orders and treatment plan.  You cried at their obstinacy but as you had done in the past, you fought back to get answers.
  • You flew home to New Jersey and headed back to your New York Crohn’s Doctor of 30 years, PICC line in tow.  He’d figured out every nuance of your Crohn’s Disease so you were confident he and his colleagues at Mt. Sinai Hospital in New York could do everything The Mayo Clinic, for some reason, could, or would, not.
  • Prior to being admitted to Mt. Sinai Hospital, you received a Certified Letter from The Mayo Clinic effectively banning you from that fine medical institution FOR LIFE: “because of your actions which demonstrate a lack of trust with Mayo providers, a failure to follow a recommended treatment plan and abusive behavior toward our hospital staff.”
  • Your mother cried when she read that letter even through you knew you’d soon be vindicated.  That said, The Mayo Clinic Banishment Letter made you feel like a “leper” and even your Crohn’s Disease had never done that.  As for “abusive behavior” toward hospital staff, you were most polite and respectful except when they did not listen to you explain your symptoms.  Then you became simply a frustrated hospital patient who had been hospitalized far away from home, for almost 6 weeks.  What they call “abusive,” you objectively viewed as “frustrated.”  Potato, Patato.
  • Your Mayo Clinic frustrations were corroborated the first day at Mt. Sinai Hospital when an Endoscopic test apparently not available at The Mayo Clinic confirmed that your problem was purely mechanical and was NOT at all a Crohn’s Disease flare-up.  Had you followed The Mayo Clinic’s advice, you’d be substantially damaging your body with POTENT intravenous steroid drugs.
  • After allotting three (3) months for The Mayo Clinic adhesion surgery to heal, exploratory surgery was performed which immediately revealed a “bundle of impinged nerves” as the culprit causing the pain.  The surgeon removed them from your abdomen, and the problem was solved.  When you tried to convey this discovery to The Mayo Clinic in an attempt to help them, help other patients with possibly the same problem, they ignored your correspondence.
  • 48 years of age2011 – It should have been a very good year especially in light of the December, 2010 surgery which had fixed the problem The Mayo Clinic had missed.  But recuperation from that relatively minimally invasive surgery also involved adjusting to moving back to New Jersey to live with your Mom as your medical bills and inability to work had played your hand.  Santa Monica, CA will be sorely missed but when you had to sell your car to pay for the monthly health insurance premiums, there was no looking back.
  • 2011 was also marked by the dramatic increased effects of your compromised immune system and the side effects of having taken the Anti-TNF Agent “Miracle Drugs” for several years.  While these “Biologic” drugs did enable you to have a few good and productive years in New Jersey and then in Santa Monica pursuing your dream of making movies, that life came at a price you could not afford.  At first, it was only the sudden onset of excruciating joint pain but then seemingly out of nowhere you’d wake up with fevers every 2 or 3 weeks that were as high as 105.  Then you were in, and out of, hospitals for bronchitis and pneumonia until your extreme shortness of breath caused a New Jersey emergency room to delve deeper.
  • Walking up stairs or participating in any type of strenuous activity had begun to cause such severe shortness of breath it felt like you were sucking for your next breath through a pencil-thin straw.  After too many Emergency Room Trips to remember, the New Jersey ER doctors performed more invasive lung tests and suddenly you woke up in a hospital room with 8-10 doctors looking down on you.  They had found numerous unidentifiable spots on your lungs and were prepping you for lung biopsy surgery.  It was happening so fast it seemed surreal.  You asked the thoracic surgeon about the look of urgency in everyone’s eyes and he told you that lung cancer was suspected and they needed to obtain the biopsy while you were still able to operate your lungs without mechanical assistance.  That day sucked.
  • You had been through so many surgeries but somehow an operation on your lungs seemed to make you feel even more vulnerable.  You hated waking up in the Recovery Room in pain and feeling COLD so you begged the surgeon and his team to make sure your pain and warmth were reasonable attended to.  Having been briefed on all you had been through in just the past few years, everyone seemed to be on the same surgical page, but they never are, and rarely ever will be.  You woke up from the surgery shivering and in severe pain.  It was as if your worst nightmare had come true.  The lovely nursing staff tried to help and gave you the standard pain medications but your tolerance for them had been blown up long ago.  You needed the Pain Management Team but signals got crossed and you suffered like an abandoned wounded soldier for 3 days.
  • Once you were coherent, they told you that you thankfully did NOT have lung cancer but you had a rare, but sometimes fatal, lung condition called “Bronchiolitis Obliterans with Organizing Pneumonia” or “BOOP.”  Technically, it is treatable with a year-long tapered course of the steroid drug, Prednisone, beginning at 60 MGs a day. But they hadn’t much experience treating BOOP and that was evident as you watched the 8-10 doctors debate the proper dosage of Prednisone to start you off at.  They also didn’t understand how you could even acquire BOOP since it typically affected older patients and was apparently much more prevalent among coal miners!  It had to be the Crohn’s Disease Anti-TNF Agent drugs because once you started them you also began experiencing severe respiratory symptoms.  While you loved New Jersey and it’d be hard to find a more appreciative fan of Bruce Springsteen and The E Street Band, your BOOP treatment had to be managed by your New York Crohn’s doctor and a New York Pulmonologist who hopefully had seen this BOOP sh*tstorm several times before.
  • The New York doctors clearly viewed the Crohn’s drugs as the cause of the BOOP and watched you carefully as the Prednisone started to change your body.  It soon became evident that you had all the side effects of Prednisone (i.e., you gained 50 pounds in 3 ½ months) but without its medical benefits as you were still struggling to breathe like Redd Foxx running The Boston Marathon at 70 years of age.  Your continuing breathing issues also caused more pneumonia episodes and more hospitalizations and if you had gained another pound from the Prednisone your body might have exploded.  Accordingly, the NY doctors convened and abandoned the traditional Prednisone BOOP treatment for an experimental one involving the Chemotherapy Drug, Cytoxan.  After a few monthly infusions of Cytoxan, the BOOP began to clear.  Again, you were “lucky.”
  • The Cytoxan was working miracles on the BOOP but it was also causing your Crohn’s Disease to flare-up.  You were fighting battles on so many fronts not to mention the barrage of medical bills, dunning notices, collection calls and disability paperwork.  Your dreams of making movies and finding a smart, cool, beautiful woman had to be placed on hold as you tried to devise a mindset to survive the avalanche of one medical adversity after another.  But when you think about it, it was all caused by your Crohn’s Disease, in one way or another.  “If the Thunder don’t get ya’, then the Lightning will.”
  • The late 2011/early 2012 Crohn’s flare-ups resulted in a few hospitalizations but nothing appeared prominently in the diagnostic tests.  However, you couldn’t leave your house due to the “broad spectrum” of Crohn’s Disease symptoms and the severe pain you experienced on a daily basis.  That “broad spectrum” phrase gives –  and it takes.  Finally, in the spring of 2012 and only at the age of 49, your long-trusted Crohn’s doctor ordered a basic GI Series and it revealed that you had BIG problems in your small bowel.  What was clearly evident to the human eye from this test were a few Strictures (i.e., adhesions causing partial obstructions in the small bowel) and  a red-hot Crohn’s Disease flare-up.  As it turned out, the fancy “cutting-edge” MRI/CT Enterography tests took too broad of a perspective to identify the specifics.  Truth be told, it was a New Jersey radiologist who suggested that you undergo a Small Bowel GI Series for closer examination.  You were initially told such tests take too much patient time and are thus no longer cost-effective for most Radiology Facilities but you again “got lucky” when this New Jersey Radiologist agreed to perform the GI Series.   Nice guy, he was probably a Bruce Springsteen fan.
  • Through your persistence and with the help of some very compassionate and smart doctors, you finally got some answers but they required the most serious Crohn’s Disease surgery you’d have to-date.  You were also told it would be hard to find a surgeon willing to tackle such a complicated gut.  Strangely, it didn’t take long to find that surgeon as you got “lucky” again.  Then, on June 28, 2012, after 17 days at Mt. Sinai Hospital, you were released after undergoing successful surgery during which numerous adhesions were lanced to simply access your intestines, several Strictures were repaired via a few Strictureplasties and your small bowel was Resected at the area of the inflamed Crohn’s Disease flareup.
  • September, 2012 – As you recuperate and try to get re-acclimated to your new plumbing, you go for a routine eye examination and learn you must have your second Cataract Surgery, this time on your right eye.  This is such a classic Crohn’s Disease complication that it’s even published in the “What to possibly expect with Crohn’s Disease” pamphlet.  That should be no problem, you’ll eventually get to it.  There’s several more complications from the Surgery, the BOOP, the Prednisone and the Cytoxan but the big question of the moment is whether or not to take a different chemotherapy drug (i.e., “6MP”) as “preventative medication” to keep you and your Crohn’s Disease away from the operating table?   Since it’s the only Crohn’s Disease drug you have not taken, it’s the only one you can take now.  But you have to wonder: Did the Prednisone or Cytoxan you took to successfully treat the BOOP cause the Strictures and Crohn’s Disease flare-up which required the extensive June, 2012 surgery?  (Keep in mind that the BOOP occurred as a side effect from years of taking the Crohn’s Disease Anti-TNF Agent drugs, Humira and Cimzia.)
  • If you think the answer is “Yes,” then why take the 6MP?  After all, there seems to always be a steep price to pay no matter what you do or take regarding Severe Crohn’s Disease.   And if your time with Crohn’s Disease has proved anything: If the Disease don’t getcha’, the drugs or the side effects will!