Tag Archives: CCFA

WATCH 3/21/13 IBD Round Table Discussion

Last night, March 21, 2013, at 9:00 PM EST, Frank Garufi, Jr. complied a “Round Table” of Four (4) people who he perceived to be amongst the leading Patient Advocacy voices for Inflammatory Bowel Disease (IBD), Crohn’s Disease and Colitis.  Frank is an incredibly dedicated and well-educated IBD Father to an 8-year old boy who was diagnosed with Crohn’s when he was approximately two (2) months old.  Since then, Frank has been on a crusade to educate himself as best and as quickly as possible so that he could be as helpful to his son as possible, both NOW and in the FUTURE.

As part of Frank’s crusade, he occupies that crucial IBD, Crohn’s and Colitis space in Google+ which many of us Advocates have yet to master.  To that end, Frank was kind enough to include me, Michael A. Weiss, in this 4-person Panel of Advocates and I was honored for that consideration.  However, I was even more humbled during the almost 2-hour IBD Round Table because I was sharing the Round Table with these Inspiring and Brave Advocates:  Christina Matthies  , Sara Ringer  and Sarah Choueiry.

What we Discussed and Addressed

We each came at the thoughtful and provoking questions and IBD issues posed by Frank from different perspectives, lifestyles and ages but we all seemed to be  opining from similar severity “spectrums” in terms of our respective IBD diseases.  That diversity resulted in a non-stop engaging discourse on all things IBD, Crohn’s and Colitis including, but not limited to, ramifications of Advocacy, opinions on how to best raise awareness of Crohn’s Disease and IBD, pain management’s role in treating the disease, how best to navigate the healthcare system to obtain the best treatment, the myriad of medical decisions which must be made by the IBD patient while compromised physically and emotionally during a hospital visit, how best to communicate with doctors, how best to offer support to fellow “Crohnies” or other IBD patients, the journey to a correct diagnosis, managing the financial woes which often accompany the chronic and expensive nature of Crohn’s, Colitis and IBD and its diagnostic tests, treatments and drugs and addressing the potentially disabling nature of these autoimmune disease.

The Therapeutic Value in candid IBD discourse

In discussing these issues, succinctly designed by Frank Garufi, Jr., we also interacted with one another in a way which I think demonstrates the broad range of coping skills one needs to successfully manage these life-altering diseases.  I think we also demonstrated the therapeutic value in TALKING about the multifaceted aspects of IBD, Crohn’s and Colitis.  Simply being able to “relate” to another IBD patient or “Crohnie” going through the same experiences left me feeling incredibly positive about future developments in IBD, Crohn’s and Colitis Patient Engagement.  If I felt that way simply discussing my disease experiences with 4 other people, I hope YOU will see how empowered that can be when YOU do the same, whether in a health care social medium platform, a virtual patient community like Crohnology.com or in real life with a close friend, colleague or loved one.

Please Comment & Pose Questions for Next Month’s IBD Round Table

If you have IBD, Crohn’s or Colitis, or love someone who does, PLEASE watch this Video, or at least watch parts of it.  Please also note that this IBD Round Table Discussion will now be a MONTHLY EVENT on Google+.  The time and date of the next one will soon be announced and I will certainly pass it along to you.  To that end, your comments and questions are WELCOMED so that we may address them when we reconvene.  Thanks.

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Formal Launch of Crohn’s Disease Warrior Patrol (“CDWP”)

Media Inquiries – Please contact me, Michael A. Weiss, as I am the Founder and Executive Director of the Crohn’s Disease Warrior Patrol.  The best way to reach me is via emailing me at Michael@CrohnsPatientPatrol.org or sending me a DM Tweet  @HospitalPatient.  Thank you.

In short, the “Crohn’s Disease Warrior Patrol” (the “CDWP”) is a NON-PROFIT “Patient Visitor Ambassador Program” which MATCHES veteran Inflammatory Bowel Disease (“IBD”) Patient “Warriors” with “local” Crohn’s, Colitis & IBD “Patients-in-Need” to offer much-needed “Tender Loving Care” (“TLC”).   The entire CDWP Project and Non-Profit Charitable Foundation is explained ABOVE in the MedStartr.com Video/Description.  PLEASE click-thru to learn more about the CDWP.

BTW – It is called the “Crohn’s Disease Warrior Patrol” simply because that is what I have been suffering from for almost 30 years but the CDWP ALSO caters to the Colitis, Ulcerative Colitis and IBD communities.  I had to come up with a NAME and ….  I hope all you Colitis, UC and IBD patients understand.  :)  

PLEASE SIGNUP to be a Patient Warrior or Patient-in-Need at the CDWP Website.

PLEASE SUPPORT the CDWP by clicking thru to the MedStartr.com Project.  Thank you.

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PITY does not breed Crohn’s Disease, Colitis or IBD Global Awareness

CCFA Blog Entry

Oh no, a Public Bathroom Stall – CCFA’s “Escape The Stall” Campaign

The above picture is from the latest well-intended NEW Crohn’s Disease, Colitis and Inflammatory Bowel Disease (“IBD”) Mainstream Awareness Campaign from the Crohn’s & Colitis Foundation of America (the “CCFA”) which has me SO disappointed, annoyed, angry and insulted that I’m up at 4 AM on a Sunday morning when I should be resting getting ready for the New England Patriots-Baltimore Ravens AFC Championship Game, given that I am a life-long Pats fan and I just turned 50 last week.  But some, not many things, are more important to me than the New England Patriots (my fandom is actually a way in which I deal with the frustrations and limitations of being disabled by Crohn’s Disease after 30 years battling the beast) and one of them is how Crohn’s Disease is perceived by the WORLD.  This is why I chose the above picture from the CCFA website depicting the possibility that a Clown can have IBD because it completes the bizarre circular reasoning of the CCFA and makes this DEBACLE of an attempt to educate the mainstream into a complete f’n joke.  Sorry, I call it, as I see it.  It is also an insult to the MANY Crohn’s, Colitis and IBD patients who suffer endlessly and somehow persevere despite seemingly never-ending obstacles that seem to only graduate to the worst possible case scenario.

 Who’s gonna do it? You? You, Lt. Weinburg?

So who really represents these Crohn’s, Colitis and IBD patients with key research and funding organizations now that we have CONFIRMED the CCFA is ill-equipped to devise an accurate Global Mainstream Awareness Campaign?  In answering that question, I am forced to quote a classic scene from the memorable 1992 movie directed by Rob Reiner, “A Few Good Men:”

 Col. Jessep (Jack Nicholson) : *You want answers?*
Kaffee (Tom Cruise): *I want the truth!*
Col. Jessep: *You can’t handle the truth!*
[pauses]
Col. Jessep: Son, we live in a world that has walls, and those walls have to be guarded by men with guns. Who’s gonna do it? You? You, Lt. Weinburg? (played by the incomparable Kevin Pollak) I have a greater responsibility than you could possibly fathom. You weep for Santiago, and you curse the Marines. You have that luxury. You have the luxury of not knowing what I know. That Santiago’s death, while tragic, probably saved lives. And my existence, while grotesque and incomprehensible to you, saves lives. You don’t want the truth because deep down in places you don’t talk about at parties, you want me on that wall, you need me on that wall. We use words like honor, code, loyalty. We use these words as the backbone of a life spent defending something. You use them as a punch line. I have neither the time nor the inclination to explain myself to a man who rises and sleeps under the blanket of the very freedom that I provide, and then questions the manner in which I provide it. I would rather you just said thank you, and went on your way, Otherwise, I suggest you pick up a weapon, and stand a post. Either way, I don’t give a damn what you think you are entitled to.

That’s right, Lt. Weinberg and the actor/comic/impressionist Kevin Pollack will now have to pick up the slack caused by the ineptness of the CCFA.

My Sister being thankful things are not worse – until they ALWAYS are w/ Crohn’s Disease

A funny interlude here is my true story of growing up as an adult with Severe Crohn’s Disease and having one of my loving sisters ALWAYS calling me in the hospital with the most genuine concern for my well-being but always saying something to the effect of, “Thank God, things could be worse, you could need surgery and lose more of your  intestine or you could be in the hospital for weeks.”  Well, in an wicked twist of fate, despite my sister’s sweet and sincere prayers for me to get better, that “worst case scenario” would almost always occur in a matter of days. It became so frequent that whenever I was hospitalized during any 1 of the 200+ times, I would ask her to NEVER repeat those well-intended words.  We laugh about it today but THAT IS Crohn’s Disease.   I’ve had so many surgeries, been on so many medications and even had to go on Chemotherapy in 2011 to SAVE MY LIFE after I developed a Severe and RARE Lung Condition from a “miracle” Crohn’s Disease drug.  And I’m a lucky Severe Crohn’s Disease patient as so many people aged anywhere from 5 to 90 have suffered much more than I from BOTH the disease and the so-called medications which apparently treat but don’t cure the disease.

Pity & Pubic Bathroom Stall Doors don’t motivate people to HELP

With this in mind and in my humble opinion, the CCFA has AGAIN failed MISERABLY in trying to help us Crohnies and IBDers by yet again putting the focus of their well-intended efforts on a BATHROOM STALL DOOR and using PITY to play directly into the public’s overall perception of the less serious stigmatizing aspects of these chronic, incurable, autoimmune and often VERY painful diseases which can, and do, DESTROY lives (and families) physically, mentally, psychologically, financially, professionally and socially.  Healthy people want to help their fellow citizens who seriously struggle after they do all they can to fight through their respective adversity.  That’s why we see the country coming together during the terrible Tornadoes, Hurricanes and Super-storm Sandy tragic Events.  Does anyone think that the image of a Public Bathroom Stall Door will elicit sympathy or encouragement from people?  Does anyone remotely familiar with the possible effects of Crohn’s, Colitis and IBD want a Public Bathroom Stall Door representing the severity of their experiences?

Worse, this “Escape The Stall” Slogan is an INSULT to the BRAVE people who battle these often HORRIFIC diseases EVERY DAY. To that end, and I have written this MANY times before and it is why I am launching the “Crohn’s Disease Warrior Patrol,” because I believe veteran Crohn’s, Colitis and IBD patients offer the most help and hope to current patients facing difficult flare-ups, hospitalizations and decisions about surgeries, medications and overall treatment than the CCFA can EVER DO.  But the NATIONAL CCFA needs to focus on educating the mainstream public about the seriousness of these diseases of which the bathroom stall plays just one of MANY aspects.

Thank you Amy Brenneman and CCFA Local Chapters & Volunteers

Please let me preface the above, although that might have been more effective if I actually posted this paragraph before my rant above, but my issue is with the paid executives at the NATIONAL CCFA offices who are responsible for this GRAVE mistake and not with the beautifully, talented, elegant, courageous actress, Amy Brenneman, who essentially lends her formidable credibility to “front” this Cause. I am SO THANKFUL to Ms. Brenneman for lending her substantial credibility to this Cause just as I am eternally grateful to the numerous local CCFA chapter volunteers and low-paid executives around the WORLD who work tirelessly to find a cure for Crohn’s, Colitis and IBD.  But when the SLOGAN for the current campaign is predicated on spreading the word in Social Media to “Escape the Stall” in an attempt to somehow convey the pain and anguish of Crohn’s, Colitis and IBD, the executives at the NATIONAL CCFA offices have demonstrated that they are out of touch with their patient population.

What does Man on the Street think about Crohn’s Disease

In my business travels when I was healthy enough to travel extensively, and even now when I am asked to speak at various Health Care Conferences, I have purposely asked numerous strangers like English-speaking intelligent taxi-drivers and engaging waiters in restaurants about Crohn’s Disease and they look at me as if to say, “I’m not sure, but isn’t that the ‘disorder” you see on TV where the women is frantically searching for a bathroom because she’s afraid she will crap in her pants on a date or at a business meeting?”  WTF!!!!!  If Mainstream Awareness has been the objective, doesn’t that mean that the CCFA has been FAILING for all of these years????

Crohn’s, Colitis and IBD are DEADLY SERIOUS and using PITY and hiding behind a Public Bathroom Stall Door does not make for a very effective Global Awareness Campaign

Thankfully, for some people with Crohn’s, Colitis and IBD they face only minor hindrances in their lives but for MANY or MOST it is a HORRIFIC DISEASE which can forever alter lives.  It can turn frustrated but kind, compassionate doctors against patients because often they have no conclusive scientific proof from which to make a diagnosis and formulate a treatment plan so they then suspect it’s in the patient’s mind because the diagnostic tests just don’t explain the existence or severity of the patient’s pain and in turn that affects how family members view a loved one in pain who has little explanation for suffering and virtually no options for an effective treatment that doesn’t actually make the suffering worse in other parts of the body.  This is just a “bonus” of these diseases and it  naturally occurs until a patient is properly diagnosed and that can take months or years, in many instances.  Did I mention all the other potentially horrific symptoms, side effects, treatments, pain, expenses, etc.?  And the CCFA picked a Public Bathroom Stall Door to portray this seriousness?  Really?

The “Crohn’s Disease Warrior Patrol” 

I don’t profess to be Lt. Weinburg or Kevin Pollak but I admire the cutting-edge work Mr. Pollak is now doing in the Entertainment Business and it has inspired me to start this “Patrol” of veteran “Warrior” Crohn’s, Colitis and IBD patients sharing their knowledge and experience with current patients going through a rough time with Crohn’s, Colitis or IBD either in the hospital or at home.  At its core, it’s a Hospital/Patient Visitor Ambassador Program but it will evolve into a Global Support Group powered by Health Care Social Media.  From personal experience, I know that I have gained much need “Perspective” when a veteran Crohn’s/IBD “Warrior” took the time to impart some words of wisdom to me.  Also, my longtime New York City Gastroenterologist Dr. Mark Chapman has also played an enormous role in helping me adjust to each new adversity thrown at me by my Crohn’s Disease.  Through it all I’ve learned that veteran patients helping another patient is truly the best medicine when it comes to tricky cases of Crohn’s, Colitis and IBD.  I applaud the CCFA for their intentions and efforts but I don’t like their means as I find them woefully inadequate, ineffective, poorly designed and out-of-date.

Perhaps this ridiculous CCFA campaign of “Escape the Stall” has provided me with even more impetus to spread my message of the “Crohn’s Disease Warrior Patrol” as fast as I can because Crohn’s, Colitis and IBD patients are suffering and the CCFA is not helping them/us the way they could be.  Things happen for a reason and there are Lt. Weinburgs standing by to save the day for the Tom Cruises, whether they like it or not.  Sometimes life calls on certain ordinary people to set into motion extraordinary things.   Stay tuned.

 Crohn’s Disease Warrior Patrol

 @CrohnsIBDPatrol

 CrohnsDiseaseWarriorPatrol@gmail.com

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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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“Scars ‘R’ Sexy” Charitable Clothing Campaign

 This Video is my unique and heartfelt contribution to the  “Scars-R-Sexy” charitable clothing campaign run by RockScarLove.com.

People go through so many difficult ordeals in life and often the physical ones are memorialized by a Scar.  But, just as with everything else in life, it’s all a matter of perspective.  Some women playfully find Scars to be “Sexy” yet others see them as significant symbols of a time in their lives when they have overcome tremendous adversity.  People with Scars learn how to draw upon these symbols for perpetual inspiration and sources of strength and courage when life requires them to do so.

In this regard, I was lucky enough to come across a related quote in a Book written by Musician, Writer and Master Story-Teller, Jimmy Buffet, which has gotten me through Seventeen (17) Crohn’s Disease-related surgeries, beginning in 1988, and with the most recent one occurring in 2012.  The Book is, “A Pirate Looks at Fifty” and that Jimmy Buffet quote is as follows:  “Scars are only Permanent Reminders of Temporary Feelings.”

RockScarLove.com is inspiring and commemorating these passionate lives through a Demonstrative Clothing Line with a mixture of original t-shirts, hats and cool under-garments which celebrate this “Scars-R-Sexy” bold mindset.  More importantly, 100% of the Net Profits are being donated to a variety of charities; one of which is the Crohn’s & Colitis Foundation.  Accordingly, PLEASE watch this 3-4 minute Video, “catch the spirit” and then visit www.RockScarLove.com.  Thank you.

Copyright © 2012 Michael A. Weiss All Rights Reserved

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Crohn’s Disease: Raising Public Awareness & the IBD Umbrella

Crohn’s Disease is essentially defined as an incurable, autoimmune, inflammatory bowel disease or “IBD.” However, it is presently most effectively explained AS IBD instead of as “Crohn’s Disease” or as its own illness with its own very specific symptoms. I think Global Positive Social Awareness of Crohn’s Disease would be significantly expanded and enhanced if its “Awareness Campaigns” gave Crohn’s Disease its own identity thus forcing it out from under this “umbrella” of IBD.  Perhaps then people around the world would understand the often horrific nature of Crohn’s Disease as well as the pervasive and multifaceted effects it has on patients. These multifaceted effects include, but are not limited to,  medical, psychological, emotional, financial, professional, social and familial.  In that regard, I think following the lead of Breast Cancer Awareness Campaigns and also focusing on the everyday heroes who battle and successfully manage Crohn’s Disease might then lead to a more Fundraising-Friendly Global Identity.

Crohn’s Disease “Awareness” – The NFL & Breast Cancer

Breast Cancer & Crohn’s Disease

For those of you with Cancer, PLEASE read this article in the spirit in which it was written.  That is, to highlight the extraordinary “Breast Cancer Awareness” movement built by the various Breast Cancer organizations as a “model” for similar Charitable/Awareness “Crohn’s Disease” programs.  Admittedly, I have a “horse in that race,” because I have been battling Crohn’s Disease for almost thirty (30) years, but what good is having a public platform if you can’t use it to bring attention to a chronic, autoimmune, incurable illness which has landed you in the hospital OVER two hundred (200) times and caused at least twenty (20) major surgeries? [rhetorical]

I am particularly impressed with the Breast Cancer organizations and their October-long highly visible affiliation with the National Football League (“NFL”).  I am not in any way comparing the suffering of a Breast Cancer patient to that of a Crohn’s Disease patient.  I’m just getting tired of suffering terribly as a Crohn’s Disease patient only to see late-night cable television commercials cast a “Crohn’s Disease embarrassment” stigma to the illness. Yes, the National Crohn’s & Colitis Foundation (“CCFA”) organization and the State and International CCFA Chapters do a great job via various “grass roots” fund-raising and support Initiatives.  But educating the mainstream about Crohn’s Disease has not been successful as evidenced by so many intelligent people still not having a clue about its possible physical, mental, financial, professional, social, emotional and familial effects.  These same mainstream people also have no understanding of the possible pervasive nature of Crohn’s Disease. [To all the Crohn's Disease volunteer folks out there, THANK YOU for your efforts.  Please don't interpret this Blog Entry as any sort of indictment of your selfless dedication and tireless efforts.  I'm merely bringing attention to an additional global corporate approach which would supplement your fine and MOST APPRECIATED work. ]

Current Ineffective Crohn’s Disease TV Commercial

It has been my experience that the CCFA Chapters around the world offer fantastic fund-raising and support assistance.  My criticism is limited to the more-corporate-minded folks who are trying to expand the world’s understanding of Crohn’s Disease so they can attract additional funding for research, education, support, etc.  I know it is expensive and difficult to create effective mainstream television commercials to raise awareness about such a quirky autoimmune disease.  In that regard, I believe money is presently being wasted on the current cable television commercials because their focus is on the wrong aspect of Crohn’s Disease as they depict afflicted patients as helpless victims of some mysterious illness which can initially strike at any time and then unpredictably recur to make life unmanageable.  Given the extraordinary people who battle Crohn’s Disease every day and still manage to accomplish their goals despite the added unpredictable adversity, and in doing so utilize their senses of humor and true grit to cope with Crohn’s, I therefore resent this “pity approach” being taken by these advertising campaigns.  Instead, let’s educate the public by celebrating these people and the way they live their lives as I’m afraid the current “promotional” strategy runs the risk of scaring away the general public from a dark, painful, unpredictable, bathroom-messy stigmatized disease.

The Focus of an Effective Crohn’s Disease Promotional Campaign

I wish these commercials would focus more on WHAT Crohn’s Disease IS and how different people SUCCESSFULLY MANAGE IT rather than on almost unthinkable doomsday scenario images which understandably elicit life-interrupting or life-changing thoughts like:

Should I try and go to law school or is it a waste of my time because my Crohn’s Disease will unpredictably hospitalize me so many times during the three (3) years of law school that I’d never even graduate?

Should I turn down those tickets to the Yankees-Red Sox Playoff Game because Yankee Stadium bathrooms are disgusting?

After being diagnosed with Crohn’s Disease, how do I re-write my ‘Life Plan’ in terms of which career to pursue?

When should I tell my new girlfriend that my excuses for LONG bathroom trips are not because I ran into an old college fraternity buddy along the way?” 

“When do I tell my new employer?”  “Do I even tell my new employer?”

“What if I have an emergency while traveling or sight-seeing, where’s the nearest public toilet?”   “What if it’s unsanitary and disgusting?”

“Might I have to suddenly ‘use the facilities’ in the middle of a meeting at my corporate job?

“What if, at that corporate job, I have ‘accidents’ in the middle of meetings with my colleagues?”

Crohn’s Disease and Inflammatory Bowel Disease (“IBD”) patients usually find ways around these “challenging” situations and the result is some VERY special and mentally tough children and adults. (Note: The acronym “IBD” is often used as a catch-all term for all “inflammatory” bowel diseases such as Crohn’s Disease and Ulcerative Colitis). These children and adult patients also develop sharp senses of perspective and humor simply because they must in order to cope with the nuances of their quirky disease. Therefore, mainstream television commercials about Crohn’s Disease/IBD should focus more on these brave patients/people and how they overcome the daily adversity they must face in order to live a relatively normal life.

Talking ’bout Crohn’s Disease – the “Bathroom Stigma”

Nobody likes talking about “going to the bathroom” but that, unfortunately, is often a major part of having Crohn’s Disease.  Losing a Breast, is, unfortunately, often a major part of having Breast Cancer and that is also an uncomfortable topic to discuss.  Yet, openly discussing the ravages of Breast Cancer has somehow been more readily accepted by the mainstream than conversing in anything regarding Crohn’s Disease.  I think that is because of the wonderful educational and awareness work being conducted by the well-organized different Breast Cancer charitable organizations.  To that end, I am only pointing out that analogous Crohn’s Disease charitable organizations could learn a lot from them.

The Power of Pink in the NFL

In terms of Breast Cancer and the NFL, October is “National Breast Cancer Awareness Month.”  The NFL is only one (1) of MANY mainstream corporate sponsors who participate in this extremely well-run and effective charitable endeavor by these Breast Cancer organizations.  Watching NFL Football Games and seeing the players all wearing some PINK-colored uniform apparel parts demonstrates the influence and creativeness of these Breast Cancer charities as the style-minded, machismo NFL players would never be caught donning pink clothes unless they were ready to be ridiculed by their fellow NFL players for “coming out of the closet.”

Perhaps this is not politically correct to say, as there is nothing wrong with men wearing pink, homosexuality, or the inference of the connection between the color pink and homosexuality, but the NFL is a collection of the most “manly” men in the world, so that “pink” perception could be problematic.  However, the NFL Pink Campaign is extremely successful and these NFL Macho Men are doing this to HELP A CAUSE that affects SO MANY WOMEN.  I guess the lesson to be learned is to never underestimate people when it comes to their charitable and empathetic endeavors.  Are the Crohn’s Disease organizations paying attention to this? [again, rhetorical]

The Power of Humor & Creativity in Raising Awareness

Kudos to the Breast Cancer charity corporate folks for sticking with their pink logo colors even within the NFL’s macho culture.  Whether it is a sense of humor or pure formidable sales ability, these Breast Cancer organizations are very clever.  Perhaps the Crohn’s Disease folks could follow that lead and have a little fun at their own expense, and in doing so, dispel the “bathroom disease” stigma  for “entertainment” and then for educational purposes.  A little creativity and humor would go a long way toward attracting people to wanting to LEARN ABOUT CROHN’S DISEASE.

Besides savvy corporate partnerships like that with the NFL, the public’s awareness that every October is National Breast Cancer Awareness Month attracts a wide, and thus diversified, array of potential charitable Breast Cancer partners and programs.  By way of example, I recently read the following on the Web regarding a “New Media” Breast Cancer charitable program between Susan G. Komen for the Cure® (i.e., one of the most widely known, largest and best-funded Breast Cancer organization in the United States) and Playboy which makes so much sense I am surprised other charities have not done this before given the consistent and worldwide allure of beautiful women and Playboy’s need to always further “corporatize” and maintain their mainstream reputation:

Playboy Enterprises, Inc. is pledging to donate 10 cents to Susan G. Komen for the Cure® for every new Twitter follower it receives during the month of October.  Each time a Twitter user follows Playboy @Playboy, the company will make a 10 cents donation to the ‘Bunnies for the Cure Team’ – a group of more than 15 Playmates that will participate in the ‘Race for the Cure’ in Los Angeles on March 24, 2012.  

The “Awareness Hurdle” for Crohn’s Disease

I could go on and on about the innovative, efficient and effective ways in which money and awareness are raised by Breast Cancer organizations, but I’m more interested in learning what can be done for Crohn’s Disease to accomplish these same goals.  In that regard, let me briefly convey the typical “Awareness Hurdle” Crohn’s Disease faces by comparing the following two (2) mock conversations between two (2) friends at lunch.  Scenario One (1) is a lunch restaurant setting between best friends Francine and Lisa, after Lisa comes from a doctor’s appointment in which she is diagnosed with Breast Cancer. Lisa’s husband is Andrew.  Scenario Two (2) is the same lunch restaurant setting between best friends Richard and Michael after Michael comes from a doctor’s appointment in which he is diagnosed with Crohn’s Disease:

Scenario 1

“Francine, I don’t know how to even share this news with you but I have just been diagnosed with Breast Cancer by Doctor Shapiro.  That’s why I was late getting here as I had to be consoled by Andrew who was cool enough to come with me, to what I thought was going to be a routine appointment.  In fact, it was Andrew who stopped me from cancelling our lunch, when he pointed out that you might be the best person for me to spend time with after such a life-changing event. I am lucky to have such a cool and supportive husband.”

Oh my God,” Francine replies, “How far along is it, will you need surgery, chemo and radiation?   Before you answer, I just want you to know that I will be there for you at every step along the way, whenever you want.  With the support of Andrew and all of your friends rallying around you, YOU WILL get through this.”

“That’s wonderful to hear, Francine, but I gotta tell you that I’m scared.  I asked all those questions you asked me and the doctors don’t know yet as I must go for more tests the day after tomorrow.  I’m also going for the obligatory Second Opinion”

Francine puts her arms across the table reaching out for Lisa’s and she holds them tenderly as a sign of support and acknowledgement.  This embrace of sorts goes on just a little too long as people in the restaurant are starting to stare so Lisa gives Francine a look of emotional appreciation and the two women resume their lunches never forgetting about the “elephant in the room” called Breast Cancer.

Scenario 2

“Rich, how’s the wife and kids?  I’ll bet your son can already beat me in basketball?”

“Michael, my Daughter can beat you in basketball.  Thanks for asking, though, everyone is fine.”

The waiter comes over to take their orders for lunch but Michael waives him off as if he is not done talking to Rich yet.  Rich’s attention hasn’t left the over-sized menu when Michael says, “Rich, I gotta tell ya’ somethin’ that happened to me this morning.”  Michael takes a long pause which gets Rich’s attention.  “You know those intense stomach pains I always complain about and how sometimes exhaustion overtakes me out of nowhere?”

Rich, sensing Michael’s seriousness tries to lighten the mood a bit.  “Mike, anyone who is friends with you knows about your stomach ‘issues’ as we’ve all had our Plumbers on speed dial ever since you moved back from California.”

“Very funny Rich.  But this is serious.  After undergoing several tests and something this morning called a ‘Small Bowel GI Series,’ my Doctor told me that I have ‘Crohn’s Disease.’  I’d never heard of it before but he said it is an ‘auto-immune illness’ which can exacerbate and become very serious. However, it also is a disease with a ‘broad spectrum’ so I may never get sicker than I am – but I’m worried.  The pain is getting more intense and every once in a while the cramps are so bad that it feels like I am going through, what I can only explain as Child Birth Labor, as the Cramps can last for HOURS until I have a bowel movement.  And ‘auto-immune,’ I have no idea what that means in everyday life.”

Rich, not exactly “Mr. Sensitive,” listens intently to every word  but then, as is his nature, uses humor to cope with the seriousness of the moment. “I’m goin’ with the Bacon Burger. You’ve eaten here before, what are you ordering?”

“Rich, I’m serious, I am very worried about this diagnosis of ‘Crohn’s Disease,’ what should I do?”

“Michael, I wasn’t tuning you out. I heard everything you said. It sounds like  you now have the perfect excuse to tell women when the smell of your Farts makes them WILT!  Seriously, ‘Croowns Disease,’ or whatever it’s called, is something I never heard of either – so I’m sure it can’t be too bad.  You will be fine.” (Underline is for effect)

The guys drop the medical conversation and continue to a lunch of laughs.  There is no “elephant in the room.”

This “Awareness Hurdle” is something I come across almost every time I am asked about my Disability of Crohn’s Disease.  People whom I have met either socially, professionally or personally, simply don’t “get” how a 49-year old athletic looking man can get so sick and be so disabled from some “disease” they have never heard of and probably cannot spell correctly.   Life is too short so I no longer even try to explain my Crohn’s Disease but recent medical problems were so serious that they finally helped me overcome this Awareness Hurdle as the word “Chemotherapy” conjured up a certain image that is as serious as Life gets.  The phrase “Breast Cancer” also conjures up a specific serious image which people all around the world respect.

What image does “Crohn’s Disease” conjure up?  Therein lies the rub.

Doctor-Patient Relationship – Communication, Collaboration, Mutual Respect & Trust

Due to Health Technology and the increased focus on Consumerism in Health-care, the Doctor-Patient Relationship is changing as fast as Congressman Anthony Weiner’s explanations about his Twitter transgressions.  All jokes aside, however, this is becoming a real problem for BOTH parties as Doctors try to service (and grow) their existing Patient Populations while simultaneously deal with increasingly challenging Health Insurance Company/Payor Productivity Payment Requirements and Patients literally don’t know what to do with their sudden “Patient Empowerment” which they keep hearing about from Dr. Sanjay Gupta on CNN.  As with anything else in Life, things ALWAYS come back to BASICS.  Thus, if you focus on Simplicity and treat others the way you would want to be treated, you can’t go wrong.  But how do we do that to fortify the Doctor-Patient Relationship in a 24/7, 365-day world of Health Care Social Media (“HCSM”) in which just one negative comment by a disgruntled Patient (or one with a basic personality conflict with the Doctor) can initiate an unfair world-wide Professional Reputation attack on a Medical Professional who was just trying to do his or her job?

As an almost 30 year sufferer of the Chronic, Incurable and Auto-Immune “Crohn’s Disease,” I have  had dealings with Doctors who have possessed a broad set of great, good and bad traits such as: gifted and compassionate; poorly skilled; poor communicator; excellent but with bad bedside manners (these are usually Radiologists by the way!); arrogant; strictly business (while being  closely examined – “Michael, your Surgical Wound looks like it is healing fine but did you know that you have an outstanding balance of $249,86?”); so myopic toward their own Specialty that if an ax were lodged into my forehead and they were a Pulmonologist they would give me the “all clear;” and bad listeners.  Given this continuing eye-opening experience, I have learned that the foundation of the Doctor-Patient Relationship rests on: Communication, Collaboration, Mutual Respect and Trust.

However, this foundation is a Two-Way Street as I find the most common problem with Doctors to be their refusal, reluctance or mere forgetfulness to use their most effective diagnostic tool, i.e., LISTENING.  Often times, their failure to Listen is driven by the extraordinary Diagnostic Testing Tools at their disposal such that it is now likely that a Test Result will tell them what they think they need to know, and thus they shun all Patient expertise no matter the Disease, Duration of Disease or constructive comment from the Patient.  Doctors should know better as Patients are PEOPLE and sometimes even the most technologically advanced diagnostic test will miss something so obvious or it will pick up on something completely irrelevant such that each miss or misdiagnosis could have been quickly dismissed by the Patient.

That said, Patients have an obligation to be succinct out of Respect for the Doctor’s Available Time when they do speak, elaborate or ask questions in an unsolicited manner during a consultation or examination with a Doctor since the Doctor is up against time constraints the Patient is unaware of and as a result the Patient is only allotted a certain amount of it and therefore it must be used wisely and for that Patient’s benefit.  But when the Patient “permits” the Doctor to do his or her job, this enhances the relationship for the next interaction – whenever that will be.  This “interplay” of sorts is where the Mutual Respect notion comes into play.  As the Joe Friday character from TV’s “Dragnet” would often say or infer, “Just the Facts, ma’am.”  Patients would be wise to be mindful of that same approach during the Doctor-Patient consultation/examination.

I also think Communication, Collaboration, Mutual Respect and Trust is most solidly built when both parties are conscious of establishing “consistency” because the Doctor-Patient Relationship requires a certain “familiarity” between the two (2) to afford enough time for each to best understand the other.  Over time, this comfort with one another breeds Trust and Credibility.  [This is why changing Doctors because of changes in Health Insurance Coverage is so difficult on Patients and I think almost discriminatory against chronically ill Patients like myself who count on a long-established relationships with particular Doctors in most efficiently treating Disease flare-ups.  It is also more cost-efficient but since the Health Insurance Companies operate their businesses like Oil Cartels, they don’t care about Efficiencies of any kind for if they did we would at least see Electronic Medical Records (“EMRs”) in place YEARS AGO.]

In summary, the Doctor-Patient Relationship is Fine; it just needs to get back to Basics.  Additionally, if “nurtured” properly, this professional relationship typically gets better over time.  If it does not, however, THEN it is time for the Patient to find a new Doctor.  Conversely, when the Doctor-Patient relationship stagnates and its lack of usefulness for the Patient is NOT apparent to the Patient (and that can easily happen  for a number of innocuous reasons), the Doctor should tell the Patient that he or she would be better served by another Doctor – especially in this new Global HCSM environment in which the possibility of an almost instantaneous unfair Reputation Attack is only a Tweet or  Click away.  BTW – that’s how a Doctor should handle unfair criticism that is posted in HCSM.  If it has malicious intent, call an Attorney but if it is simply a Patient venting, just stick to certain rules, be fair to all Patients, and treat your Patients as “People” AND in the manner YOU would want to be treated if they were the Doctor and you were the Patient.