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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3 responses to “PITY does not breed Crohn’s Disease, Colitis or IBD Global Awareness

  1. Michael, this article was smart, funny, poignant, and really brave of you!!! I loved the video of Amy B., too. She is wonderful, but the stall slogan and images leave me feeling sad. I have had so many near accidents (don’t like to use that word, even!) and I have spent some embarrassing lengths of time in public restrooms. I wonder if the ad agency actually,talked to us Crohnnies or Uc-ers? Your sister in the hospital—omg, I got laughing! I have another 20 centimeters of small bowell disease ;( just found out. But you rock, and keep writing!!!

  2. Michael A. Weiss

    Dede – thank you for the kind words. As to your inquiry, I doubt the CCFA spoke to ONE PATIENT in testing out how this would be received by sufferers of Crohn’s, Colitis and IBD and it is my further understanding they had an Ad Agency do this Pro Bono which only verifies the old adage that “you get what you pay for.” Thanks for reading my Blog!!!!

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