Category Archives: Bathroom Stigmas & Crohn’s Disease

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

Posted on January 20, 2013 | 2 Comments

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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Posted in Auto-Immune Disease, Bathroom Stigmas & Crohn's Disease, CCFA, chrones, chrones disease, Colitis, Crohn's, Crohn's Disease, Crohn's Disease Mainstream Awareness, Crohn's Disease Warrior Patrol, Crohnie, Crohnies, Crohnology, IBD

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Funny Bathroom Adventures with Crohn’s Disease

Posted on August 9, 2012 | 9 Comments

When the Bathroom Crime was committed

The year was 2009. The United States inaugurated its first African American to be President, President Barack Obama. The Big Three US Car Companies were in dire financial straits.  “Slumdog Millionaire” had edged out “The Curious Case of Benjamin Button,” “Milk,” “The Reader” and “Frost/Nixon” for the Best Picture Oscar. “30 Rock” was voted Best TV Comedy and “Mad Men” the Best TV Drama.  Pilot Chesley B. “Sully” Sullenberger safely crash-landed a U.S Airways jetliner into New York’s Hudson River after striking a bird during take-off from New York’s LaGuardia Airport.  All 155 people on board were saved. The Pittsburgh Steelers defeated the Arizona Cardinals by the score of 27–23 to win the NFL’s Super Bowl and the New York Yankees defeated the Philadelphia Phillies, four games to two, to win the franchise’s 27th World Series championship.  I was up to 198 hospitalizations and 17 major surgeries and possibly positioned for more of both, because my Crohn’s Disease was active, intense and unpredictable.

The Scene of the Crime – Beverly Hills, CA

I remember it as a typical April, Los Angeles, California day.  The weather was terminally beautiful and young movie mogul, “Lew Wasserman” “wannabes” took up every seat at Starbucks and Peet’s Coffee shops using them as “virtual offices” and purposely talking loud on their cellphones as if the fate of the entertainment industry rested on their every word.  “New Media” was the talk of the town and for the first time in many years, I was actually in the right industry, at the right time.  My days were jam-packed with as many meetings as Los Angeles traffic would permit.  I loved every minute of it.  So, in my “Business Affairs” uniform of neat jeans, a collared shirt, sports jacket, shoes and personality-hiding sunglasses, I left my apartment in Santa Monica at 11:00 AM for a 12:30 PM “coffee meeting” in Beverly Hills.  This was normally a 20-minute drive but I couldn’t rely upon anything as Crohn’s Disease was making my life as predictable as the career of comedian Artie Lange.

I Can’t Shit where I Eat

When this happened in the past, I made sure I arrived at the general area of the meeting’s location early enough so I wouldn’t have to literally “shit where I eat.”  Since Hollywood and the entertainment industry are built on illusion, perception and deception, I knew I had to maintain a healthy persona regardless of the pervasive effects of my Crohn’s Disease and I just tried to minimize how my problems affected other people.  But because of the aforementioned reasonable mantra of wanting to separate various aspects of my life, “casualties” were unavoidable and they usually came in the form of “destroyed” bathrooms.   Rock-n-roll acts destroy hotel rooms; Crohn’s diseased executives in Hollywood destroy bathrooms.  On this late April day, that casualty was to be an innocent top-notch dining establishment in Beverly Hills whose only fault was that it was just situated in the wrong place, at the wrong time.

 Tom Petty – “Runnin’ Down a Dream”

As I drove down Wilshire Boulevard in my friend’s convertible, for which I was Custodian due to his constant travel schedule, and which I saved for beautiful days like this, beautiful even by Los Angeles cynical standards, I sang along with Tom Petty on the radio.  At that moment, it felt like “anything was possible” and I wished I would have “hit cruise control” ‘cause I “rubbed my eyes” as the trees went by in the rear view mirror.  I was “Runnin’ Down a Dream” with each business meeting and couldn’t have felt more alive.  As I got closer to Beverly Hills, I started wondering where Tom Petty was when he wrote that song because it so perfectly captured the feeling I was experiencing at the moment.  But, the reality of looking for a convenient parking spot set in and I had to leave my fascination with the creative process for another time.  I didn’t realize it at the time, but the parking spot I pulled into was more convenient than I would have ever imagined.  That’s probably what songwriters say when something they write simply to exercise their creative gifts becomes iconic and part of the soundtrack of millions of lives.

A Bowel Movement interrupts my Dream

I secured the convertible for parking and noticed that I had parked 2 stores away from one of the finest “power lunch” restaurants in Beverly Hills.  I typically ate at these types of places with certain “A-list” clients but for some reason I had never been to this one and always wondered what it was like.  My mind then switched back to the matter at hand as I made sure the convertible’s roof was firmly fastened.  Feeling satisfied as the custodian of my buddy’s car, I took out my meeting preparation notes and began thinking about the deal structure I was going to propose at this 12:30 PM coffee meeting.  It was almost noon and I was hoping to finish my preparation in time to walk around Beverly Hills and “people watch” until I felt the rumblings of a possible bowel movement.  “Houston, we have a problem.”

With Crohn’s Disease, at least for me, bowel movements come with either too much notice so that you are held up by a porcelain anchor or with no notice at all so that improvising is what keeps you in the game.  I couldn’t tell with this one because it felt like it was not exactly “loaded in the chamber” but I did know that I had 30 minutes to figure it out and I did not want to be surprised during my coffee business meeting.  Mind you, people I encountered in Los Angeles seemed to make big deals over nothing yet they did nothing over big deals.  They also focused in on a person’s “energy” the same way TV’s Cesar Millan does with aggressive dogs.  Then again, these same perceptive and “accepting” Angelenos cancelled meetings with me when it rained.  So, I wasn’t sure what the interpretation would be if I abruptly excused myself from a business meeting to RUN to the bathroom, but I knew it would at least be remembered and told to many people and I did not want to be remembered like that.

“Stop that Man with Crohn’s Disease”

Not wanting to give off the wrong “energy” (or the wrong smell!) at my 12:30 PM meeting, I figured standing up would help me determine the predicament I was in. Sure enough, before my body was even fully extended from getting out of the car, the aforementioned bowel movement was “locked and loaded.” Finding the closest, and cleanest, bathroom now became my 30-minute mission.  I looked up at both sides of the street and saw a few high-end hair salons but there were just dirty images in my memory bank of typical hair salon bathrooms.  With laser-like focus, I again noticed this “power lunch” restaurant and knew it was my best bet.  I just had to come up with a story that would permit me to get past the absolutely gorgeous female “Hostess” to get to the bathroom location without drawing attention to myself as having crashed the joint to use it as my personal Beverly Hills bathroom.  Thankfully, I had my “Business Affairs” Uniform on and it allowed me to “act as if” I was meeting a client at the restaurant.  Obviously, I did not have a reservation so I had to be very careful with the words I used in communicating with the restaurant’s Hostess otherwise walking to the restaurant’s bathroom would be tantamount to going through a massively-built Bouncer at a nightclub after he clearly said, “No.”  For a second or two, before I summoned up the courage to speak to the statuesque Hostess and not knowing where the bathroom was located within the restaurant, I had visions of this beautiful Hostess on a walkie-talkie saying: “Stop that Man with Crohn’s Disease. The man with Crohn’s Disease has advanced past the bar area and is headed toward the dining area.  We must stop him before he gets to the bathroom.  I repeat: ‘Stop that Man with Crohn’s Disease.’”

It was getting difficult to maintain my composure and not reveal my deceptive intentions but the Hostess made it easy because I guess I “looked the part.”  Everyone in LA is always worried about moving up the career ladder and therefore treating someone badly who can help you is not a smart move in that regard.  Also, in Los Angeles, if you wear a baseball cap and deliberately try to hide your identity with it, you are probably a celebrity.  If you wear pressed jeans, a collared shirt, a sports jacket and shoes, you are likely an agent, manager or some other type of executive most likely involved with celebrities.  In each of these instances, however, you can likely help advance someone’s career in the entertainment industry where “Who you know” is so much more important than “What you know.”  It also didn’t hurt that I was gonna’ try to flirt with the Hostess and I knew if I soiled myself in front of her, I was not going to get her phone number.

Past the Restaurant Hostess to the Bathroom

While I’ve been told I look a little like Robert Downey Jr., I didn’t have a baseball cap handy and my Uniform seemed to be the wardrobe required to pull off my “Act as if” plan.  The Hostess smiled at me and welcomed me to the restaurant.  I purposely acted as if I was multi-tasking on my phone, and politely told her that a client from out of town told me to meet him outside this restaurant because he was familiar with it.  But, I added, “I’m 30 minutes early and it’s hot outside.  Would it be too much trouble if I used the bathroom?”  She heard everything I said but was intermittently distracted by having to greet other lunch customers so I think she erred on the side of caution as per the LA career advice above in case me or my client were “power players.”  She graciously invited me to wait at the small bar at the end of the dining room and to certainly feel free to use the bathroom.  Then she pointed out where the bathroom was and I purposely looked at my phone as if my need to use the restaurant’s bathroom was merely incidental to preparing to meet my client and not paramount to my very existence or preventative of soiling myself any second and in front of her. Her beauty seriously helped me keep my cool in this regard.

Public Bathroom Phobias re: “Dropping a Deuce”

Having to use a public bathroom to “make a number 2” or “drop a deuce,” freaks out the bravest of souls.  But when you have a chronic illness like Crohn’s Disease which makes this aspect of life a roller-coaster of fun, you learn to “embrace” the concept of public toilets and make the best of it.  Embracing them, however, is a metaphor so people learn to embrace them in different ways.  For me, I like space, privacy and cleanliness and therefore I am always aware of high-end restaurants and hotels because they usually meet my Zagat’s-like criteria.  In that overall department, the bathroom in this Beverly Hills restaurant did not disappoint but it needed some assistance in the cleanliness area.  To that end, I have become an expert at cleaning a toilet bowl seat quickly and then precisely lining it with toilet paper for double protection.  In fact, my skills are so developed that I think I could get a job with the Secret Service if the President ever had to use a public toilet.  That said, the degree of difficulty in cleaning toilet bowl seats is ramped up by how bad I have to use said toilet.

My Ass’ Honing Device

As soon as the gorgeous Hostess said the words, “certainly feel free to use the bathroom,” my ass’ “any port in a storm” honing device sensed a resolution to its problem and the pressure to drop that deuce intensified tenfold.  Then, as I walked past the Hostess toward the bathroom, I could barely avoid sprinting to the toilet but I had to maintain my poise because the bathroom door was literally within sight of the dining room and I would have been “made” had I given in to my body’s needs.  I also would have blown any chance of getting her phone number.  Much to the chagrin of my ass and its honing device, I finally arrived at the one (1) “open” toilet bathroom (i.e. no stalls or urinal, just a classy toilet) only to find a nasty-looking toilet seat.  I quickly went into my “Hazel” mode and cleaned the seat with water and toilet paper.  I also had some packaged small alcohol pads which I walked around with just for this type of emergency but they were old and devoid of alcohol when I opened them.  I was also racing against the clock since this was the only men’s bathroom in the joint and it being lunch hour, someone eating at the restaurant surely had to use these facilities at any moment. People also saw me walk into the bathroom so this was not an anonymous stall situation, if you know what I mean.

Dropping the Deuce

As best I could, I cleaned the seat and the floor just in front of the toilet seat, and then quickly lined the seat with toilet paper as my ass’ honing device grew to such an intense level it almost started to vibrate.  Talk about “degree of difficulty.”  I sensed the time crunch and sat down and did what came natural.  The relief was instantaneous and also “in-tact” but it was rather large so I was glad it wasn’t my home toilet.  I flushed, cleaned myself, flushed again and then just sat there for a few more seconds in case there was “more to the situation.”  My stomach had calmed down and my ass’ honing device seemed satiated so I stood up and started to pull my underwear and pants up.  However, before I could get a good grip on my pants, I heard the unmistakable sound of the toilet bowl over-flowing with cascades of water hitting the floor all around me.

Post-Plunger Flushing is always Risky

To avoid being hit by these small waves of toilet bowl water, I hopped on one leg to the sink area, holding my pants and underwear up from touching the increasingly wet floor, and put myself together.  As a veteran of similar situations, I was confident I could use their plunger to avert an embarrassing water disaster so I carefully walked the few feet back to the toilet to assess the situation.  I used my best plunger moves to push down whatever was causing the problem, all the while making sure the water and “whatever” did not touch me or my clothes.  Since you don’t really know if your efforts are successful with a plunger until you flush the toilet again, I also had to pull that lever again.  But before I did, and after a few silent prayers to whomever was listening to me, I looked around the bathroom and made a mental note of my escape route, the same way I do on an airplane.  Then I flushed and it quickly became apparent I had made a horrific situation, even worse.  Before having to surf my way out of the bathroom, I made a bee-line for the door and with my peripheral vision I noticed the water slowly following me out into the dining room from underneath the bathroom door.  Dating the Hostess was looking bleak.

Calmly Walking Away from an Over-Flowing Toilet

I still had a little bit of a walk to get to where the Hostess stood and I was just praying that nobody in the dining room noticed the water coming out from under the bathroom door.  Luckily, I made it to the Hostess’s area and she just smiled and asked me if I needed anything as she was oblivious to what had happened in the bathroom.  She was just kind, nice and beautiful.  I thanked her profusely and then told her that I had to make a few business phone calls and didn’t want to disturb any of her patrons so I was going to wait outside for my client.  She again smiled and offered to accommodate me in any way.  Then I told her that I thought there was some type of problem in the Men’s Bathroom as I noticed water start to leak while I was leaving the bathroom.

In the middle of my mea culpa, she got distracted by a phone call and directed an over-compensating smile toward me and simultaneously motioned with her finger, while she mouthed the words, for me to wait “one second.”  Maybe she was going to give me her number without me asking for it?  I waited, hoping that the torrents of water hadn’t yet hit the shoes of some powerful Agent who would ban me from Hollywood for life.  That one (1) second seemed like an eternity but she was off the phone before I started to physically shake at the thought of the industry’s magazine, “Variety,” doing a front-page story on this embarrassing mishap.

Destroying the Bathroom & Dating the Hostess

Apparently she could not hear me when I told her about the bathroom mishap, so, like the Captain of the “Titanic” telling passengers they may experience some water in their cabins over the next few hours, I repeated what I had said about the possible water leak in the Men’s Bathroom.  She motioned with her hands that she was not at all worried about the situation but I tried to reiterate the possible urgency of the situation especially in light of the bathroom’s direct proximity to the dining room.  She said she’d call somebody to fix it and with a genuine smile, that I needn’t worry.  Then, she was again interrupted by a phone call which warranted some privacy because she had to turn her back towards me (which I didn’t particularly mind as she was a striking woman).

It was probably an A-lister representative calling seeking a reservation.  I took that as my cue to leave – and to never come back. :)   I still think about how beautiful and kind she was and that if I hadn’t destroyed the bathroom, who knows, we may have really connected.  I was just too embarrassed to wait there and ask her for her phone number just as someone from the kitchen came running out screaming about somebody who destroyed the bathroom!  That’s why I can never forget this bathroom story.

By the way, I made it to my 12:30 PM coffee meeting feeling great and “Variety” never wrote a story about my Beverly Hills Bathroom Misadventure but I still feel bad about how I destroyed the restaurant’s bathroom.  I also wonder what might have been with the beautiful Hostess.  Hollywood and Crohn’s Disease.

If you want to share a funny Crohn’s Disease or Inflammatory Bowel Disease (IBD) Bathroom Story, please comment below.  Thanks. 

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Posted in Bathroom Disasters, Bathroom Stigmas & Crohn's Disease, Coping with Crohns, Crohn's, Crohn's Disease, Crohnie, Crohnies, Funny, Funny Bathroom Stories, IBD, Laughing, Medical Humor, Public Bathroom Phobias

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Crohn’s Disease Cologne & “Counteracting Spray”

Posted on June 8, 2012 | 1 Comment

This is a 4-minute Parody Video of the Late Night TV Commercial about “Crohn’s Disease” which seems to have the best of intentions but nevertheless winds up stigmatizing those with Crohn’s as desperate people forever in fear of not being able to find a bathroom when they need one!

As I have been battling Crohn’s Disease for almost 30 years and on June 11, 2012, I will be undergoing my 17th surgery (and 200+ hospitalization), I am well aware of the seriousness of Crohn’s, Colitis and IBD. In that regard, I hope people similarly affected by Crohn’s get some comic relief from this Video.

© Copyright 2012 Michael A. Weiss

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Posted in "Confessions of a Professional Hospital Patient", Bathroom Stigmas & Crohn's Disease, Colitis, Crohn's, Crohn's Disease, Crohn's Disease Mainstream Awareness, Crohnie, Crohnies, Funny, IBD, Marketing Crohn's Disease, Medical Humor

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Crohn’s Disease is “NFL-Tough” according to Matt Light, retired NFL Offensive Lineman

Posted on May 10, 2012 | Leave a comment

When Matt Light of the NFL’s New England Patriots announced his retirement this past week, he also disclosed for the 1st time that he has been suffering from Crohn’s Disease for the past 10 years.   He described his battles with Crohn’s Disease as extremely painful and ugly, with pain so bad it was often paralyzing.  In fact, a 2004 surgery to remove 13 inches of his intestine combined with post-operative complications landed Matt in the hospital for 30 days during which his typical NFL Offensive Lineman weight of 316 fell all the way down to 260.  Yet, through it all, Matt persevered and appeared in Five (5) Super Bowls protecting Quarterback Tom Brady and winning three (3) of them.  Matt Light’s candor and brave account about how painful and serious Crohn’s Disease can be should go a long way toward raising the public’s awareness of this often pervasive, debilitating, painful and incurable chronic illness.

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Posted in 1st Diagnosed with Crohn's DIsease, Bathroom Stigmas & Crohn's Disease, Celebrities with Crohn's Disease, Crohn's Disease, Crohn's Disease Mainstream Awareness, Marketing Crohn's Disease, Resilency, The Medical Minute

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Chronic Disease – a Teenager’s WISE Perspective

Posted on March 25, 2012 | 1 Comment

This Video features an email I received from a then-19-year old, Jennifer Wheeler, now a talented artist in college who was battling various social aspects of living with Chronic Illness and Crohn’s Disease.  Yes, you can be THAT BEAUTIFUL and have Crohn’s Disease.  When her Date asked, “Is Crohn’s Disease contagious?” she knew there was something not being communicating to people about the etiquette of inquiring about chronic disease.  After listening to her being upset, I thought her insights and perspective were wise, prophetic and truly indicative of what people go through who must battle chronic illnesses of all kinds.  So I asked her to write down these thoughts and send them to me in an email as I thought this would be a therapeutic exercise and it would help her get through the experience.  However, when I received her email I was impressed with her overall Perspective and how she was able to communicate various issues about Chronic Illness that often go unaddressed.  To that end, I told her that I wanted to share it with others because it contained many nuggets of helpful information which I thought they (and many others) could use in coping with their respective chronic illnesses.  As a testament to Jen’s strength, courage and genuine interest in helping others, she didn’t hesitate for a second and gave me the permission I needed and the result is this very powerful Video.

(Please note:  I will be slowing down a bit with my typical production schedule of One (1) Video per week partially due to my continuing health issues and also because I have started to pen what I hope to be the most helpful Resource about “Managing Chronic Illness” tentatively called “Chronic Illness:  Truths, Tales and Tips.”  Depending on my Health, I hope to finish it in a few months and have it out as an eBook and hopefully also as an Audio Book by mid- to late- summer.)

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Reprise – You Know You Are A “Crohnie” when …..

Posted on December 25, 2011 | 5 Comments

A “Crohnie” is a person with Crohn’s Disease. However, given the similarities in the hassles, challenges, health insurance codes and the often excruciating pain associated with Ulcerative Colitis (“UC”), Irritable Bowel Syndrome (“IBS”), Colitis and the “catch-all” Inflammatory Bowel Disease (“IBD”), Crohnies view UCers, IBS, IBD and Colitis folks as much respected Brethren and thus, fellow “Crohnies.”  To the Crohnie, each is like a “Brother from another Mother” and therefore the term “Crohnie” must include them.

Accordingly, as a moving homage to Redneck Comedian Jeff Foxworthy:

“You know you are a ‘Crohnie’ when….”

You know You Are a Crohnie when you believe, as per Doctor’s Orders, that Vodka is a permitted “Clear Liquid.”

You know You Are a Crohnie when your Twenty-Something Nephews think they can Fart at your House with impunity.

You know You Are a Crohnie when you rationalize taking the drug Prednisone as a license to eat anything, at any time.

You know You Are a Crohnie when you rationalize taking the drug Prednisone as a license to act like a lunatic.

You know You Are a Crohnie when you always have a Roll of Toilet Paper in Ur Car.

You know You Are a Crohnie when Turnpike “Rest Areas” are really fodder for Great “Public Bathroom Disaster” Stories.

You know You Are a Crohnie when you are now confident enough that you can brag about funny Public Restroom stories & the number of toilets you’ve stuffed.

You know you are a Crohnie if you’ve given up explaining to friends why you can eat at a McDonalds, White Castle or In-N-Out Burger with no problem but still can’t eat popcorn or a healthy salad without having a Crohn’s flare-up.

You know You Are a Crohnie when you are watching TV with your Mom and both of you have your own respective Air Freshener Spray Cans.

You know You Are a Crohnie when said Air Freshener Spray Cans are BOTH aimed at YOU, ready to spray, “with the safety off.”

You know You Are a Crohnie when you set the dinner table with a knife & fork but all you’re “eating” is “Ensure.”

You know You Are a Crohnie when all you own is Black underwear.

You know You Are a Crohnie when the glove compartment AND the trunk of your car both contain Imodium.

You know You Are a Crohnie when you are less embarrassed buying Enemas than Condoms.

You know You Are a Crohnie when you know “Milk of Magnesia” doesn’t taste like “Milk” at all.

You know You Are a Crohnie when you’ve become an expert of the potency of the different brands and scents of Air Fresheners.

You know You Are a Crohnie when you look forward to hospitalizations because there you can fart with impunity.

You know You Are a Crohnie when people get you Gift Certificates to your favorite Pharmacy during the Holiday Season.

You know You Are a Crohnie when you must own an industrial strength “Snake” because no Plunger can free your Home Toilet of the occasional large “log.”

You know You Are a Crohnie when you even designate a “Home” Toilet.

You know You Are a Crohnie when you bring your own pillow to the Hospital.

You know You Are a Crohnie when you experience euphoria at a rock concert or public sporting event after passing silent but potent gas, estimating its invisible airborne travel time and then seeing it affect the olfactory senses of Sections of People, one Patron at a time.

You know You Are a Crohnie when you can discern between different Air Freshener Spray Scents to obtain the most powerful one.

You know You Are a Crohnie when your abdomen sometimes feels like you’ve been trapped underneath an earthquake-ravaged building and all of the weight is on your torso.

You know You Are a Crohnie when no matter how many times you tell people that you are not feeling well or that you are going through a Crohn’s flare-up they always respond: “But you look great!”

You know You Are a Crohnie when you reserve your airplane seat around the location of the plane’s bathroom.

You know You Are a Crohnie when the Transportation Security Administration (“TSA”) starts looking through your Carry-On Bags but gives up and waives you through the Gate after they see Dulcolax, Metamucil, Glycerin suppositories and three (3) changes of black underwear.

You know You Are a Crohnie when you run into an old friend while purchasing Stool Softeners or Laxatives and you attribute the purchase to your kind, harmless Mom because, after all, “she is getting on in her years and ….”

You know You Are a Crohnie when you tell someone you have “Crohn’s Disease” and they ask if it is contagious.

You know You Are a Crohnie when you tell someone you have “Crohn’s Disease” and they ask: “Is that “the Bathroom Disease?”

You know You Are a Crohnie when you actually understand your Health Insurance Policy.

You know You Are a Crohnie when your mail is mostly comprised of Medical Bills, Explanation of Benefits (“EOBs”) from your Health Insurer and Dunning Notices regarding said Medical Bills.

You know You Are a Crohnie when you hand out Holiday Gifts to the Office Staffs of your various Doctors for all the special treatment they bestow upon you year-after-year.

You know You Are a Crohnie when you prefer certain flavors of Barium over others.

You know You Are a Crohnie when during a Crohn’s flare-up your Joints, Fingers and Toes feel like Voodoo Dolls randomly pricked by painful needles controlled by your arch rival from high school.

You know You Are a Crohnie when you sometimes get gas so powerful it feels like your butt is being lifted off the toilet bowl when you release it.

You know You Are a Crohnie when you know to shave both arms before being admitted to the hospital for the inevitable intravenous lines.

You know you are a Crohnie when you’ve learned to “embrace the suck” of these very challenging chronic illnesses & can laugh about it all.

You know you are a Crohnie when you finally understand that sometimes the Medical Treatment is temporarily worse than the Disease.

You know you are a Crohnie when you truly appreciate the interest, care and concern of friends and loved ones.

You know you are a Crohnie when you understand the vital importance of the support of friends and family.

You know you are a Crohnie when you realize that only your body is affected by the Disease and not your mind or your ability to laugh.

Finally, You know you are a Crohnie or that You love a Crohnie if you’ve read this far and for that, I am grateful.  Thank you.

by

Michael A. Weiss

Copyright © 2011 All Rights Reserved

 

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Posted in Bathroom Stigmas & Crohn's Disease, chrones, chrones disease, Colitis, Crohn's Disease, Crohnie, Crohnies, Funny, IBD, Laughing, Medical Humor

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You know you are a “Crohnie” when …..

Posted on December 21, 2011 | 2 Comments

As a moving homage to Redneck Comedian Jeff Foxworthy and to Crohn’s Disease patients around the world: “You know you are a Crohnie when….”

You set the dinner table with a knife & fork but all you’re “eating” is “Ensure.”

All you own is Black underwear.

The glove compartment AND the trunk of your car has Imodium in it.

You are less embarrassed buying Enemas at the Pharmacy than Condoms.

You look forward to hospitalizations because there you can fart with impunity.

During the Holiday Season, people get you Gift Certificates to your favorite Pharmacy.

You must own an industrial strength “Snake” because no Plunger can free your Home Toilet of the occasional large “log.”

You are watching TV with your Mom and both of you have your own respective Air Freshener Sprays.

Said Air Freshener Sprays are BOTH aimed at YOU, ready to spray, “with the safety off.”

What is a Crohnie?

A Crohnie is a person with Crohn’s Disease.  However, given the similarities in the hassles, challenges, health insurance codes and the often excruciating pain associated with Ulcerative Colitis (“UC”), Irritable Bowel Syndrome (“IBS”), Colitis and the “catch-all” Inflammatory Bowel Disease (“IBD”), Crohnies view UCers, IBS, IBD and Colitis folks as much respected Brethren.  To the Crohnie, each is like a “Brother from another Mother” and therefore the term “Crohnie” includes them.

 What is Crohn’s Disease?

Crohn’s disease is a type of inflammatory bowel disease (i.e., the digestive tract) that affects approximately 700,000 Americans.  It is a broad spectrum disease such that different patients can have completely different experiences in terms of degree of pain, need for hospitalization, the foods which trigger flare-ups, effective medications or other treatments, etc.  For me, at the age of Forty-Eight (48), it has included Two Hundred Plus (200+) hospitalizations and approximately Fifteen (15) to Twenty (20) surgeries.  But for one of my close relatives similarly diagnosed, it has been no more than a minor inconvenience with no hospital visits and no surgeries.   If only my family had money and it was distributed so disproportionately….

It is an incurable auto-immune disease whose most successful treatments suppress patients’ immune systems and thus leaves them vulnerable to numerous other conditions.  It’s like going on a blind date and instantly realizing how un-attracted you are to your date but then you also discover he’s a selfish, ill-mannered ego maniac.  It is a Lose-Lose situation.  The auto-immune component often causes Crohn’s patients to have exponentially longer “healing times” in response to common infections and it can cause abnormally more intense, debilitating or merely longer-lasting responses to minor health issues such as seasonal allergies.  Accordingly, Prostatitis for me may last several weeks while my buddies simply take prescribed antibiotics and start urinating full-stream in no time.

Crohn’s disease can affect any area of the GI tract, i.e., from the mouth to the anus, and the swelling extends deep into the lining of the affected area.  This causes a “narrowing” of the necessary passageway for food, gas and stool. As a result, the swelling can cause severe pain and can make the intestines empty frequently, resulting in diarrhea; or not at all, when the body’s natural process of peristalsis forces downward “movement” inside the intestine and then severe child labor pain-like feelings can set in along with the risk of perforation of the intestine. This severe child labor-like pain and possible perforation of the intestine could be indicative of a life-threatening situation and then the Crohn’s disease patient must go to a hospital.

Because the symptoms of Crohn’s disease are similar to other intestinal disorders, such as IBS and UC, it can be difficult to diagnose.  Unlike UC and IBS, however, Crohn’s disease can involve all layers of the intestine, such that normal healthy bowel can be found between sections of diseased bowel.  These are sometimes referred to as “Skip Areas.” In addition to the fact that Crohn’s disease frequently recurs, and in some cases can also be quite aggressive, Skip Areas are one of the primary reasons why operating to remove diseased portions of bowel is very difficult, and unless presented with emergent circumstances, not a preferred option.  All that said, it makes you really appreciate a normal bowel movement.  Is that what they meant when they said, “Don’t forget to stop and smell the roses?”

Treatment for Crohn’s Disease

Treatment may include drugs, nutrition supplements, surgery, or a combination of these options. There is also a rise in the successful use of organic foods and homeopathic supplements to combat and/or decrease the number and frequency of Crohn’s flare-ups but these pioneering efforts have not been proven scientifically safe and effective and they tend to be extreme and difficult to implement within a normal lifestyle without actually living INSIDE of a Whole Foods Market.  In any event, the goals of treatment are to control inflammation, correct nutritional deficiencies, and relieve symptoms like severe abdominal pain, diarrhea and surgical complications, and to also treat side effects from the various forms of successful Crohn’s treatments.  So, the objective of successful Crohn’s disease Treatments is to treat the serious and frequently debilitating side effects of the fabulous aforementioned successful Crohn’s treatments.  Did Abbott and Costello invent Crohn’s disease?

A stark example of this Abbott and Costello effect of the different successful Crohn’s disease treatments is what I am presently living through in that my Crohn’s disease was successfully treated for a few years (i.e., I experienced very few flare-ups) with what is referred to as an Anti-TNF Agent Drug (namely, “Humira”) but then I started to develop recurrent Pneumonia and other respiratory problems which were so serious that they required several hospitalizations.  Eventually I underwent lung surgery for the doctors to obtain lung biopsies and then I was diagnosed with “Bronchiolitis Obliterans Organizing Pneumonia” (a/k/a “BOOP”), a rare and potentially lethal Lung Condition.  (When I first heard the diagnosis I thought they had me confused with a dinosaur character from “The Flintstones”!) The “textbook treatment” for BOOP was one (1) year of a very high daily dosage of Prednisone (i.e., 60 MGs) eventually tapered down appropriately over said year.  However, after three (3) months or so, and about 45 extra pounds and one almost psychotic disposition, it was clear my body did not respond as was hoped to the massive amounts of Prednisone so I underwent a form of Chemotherapy with the drug “Cytoxan.” After three (3) monthly infusions of Cytoxan, my lungs apparently significantly improved (although it is unclear if the BOOP will be chronic and therefore come back in the future) but now my Crohn’s disease seems to have been aggravated by the Chemotherapy.  To that end, I am seeking treatment for such severe abdominal pain that I cannot eat solid foods without the subsequent digestive process literally bringing me to my knees crying from the pain.  I live on Lollipops and Liquids.

Given the current state of Crohn’s disease research, treatment for it can help control the disease by lowering the number of times a person experiences a recurrence or flare-up, but there is no cure. Some people have long periods of remission, sometimes even years, when they are free of symptoms. However, the disease usually recurs at various times over a person’s lifetime and predicting when a remission may occur or when symptoms will return is not possible.

Sometimes this frustrating research reality sounds to me like someone was given a great deal of Research Grant Money and after an extensive three (3) year study, they concluded: “We think the Butler did it, but then again, it could be Colonel Mustard, in the Kitchen, with the Fireplace Poker. We need more time and then we’ll get back to you.”  In all seriousness, Crohn’s disease can impact a person in so many ways including physically, medically, mentally, emotionally, professionally, financially and socially.  I kid the Researchers but I sincerely appreciate their efforts and dedication and I pray for their success.

**Much of the above medical information regarding Crohn’s disease has been obtained from the National Digestive Diseases Information Clearinghouse. The sarcastic commentary is all mine.

“You know you are a Crohnie when….”

You bring your own pillow to the Hospital.

You experience euphoria at a rock concert after silently passing potent gas, estimating its invisible travel time into the different seating sections, and then merely by facial expressions, seeing a section of people affected, one by one.

You can discern between different Air Freshener Sprays to obtain the most powerful one.

You become an expert of the potency of the different brands and scents of Air Fresheners.

Your abdomen sometimes feels like you’ve been trapped underneath an earthquake-ravaged building and all of the weight is on your torso.

No matter how many times you tell people that you are not feeling well or that you are going through a Crohn’s flare-up they always respond, “But you look great!”

You run into an old friend while purchasing Stool Softeners or Laxatives and you attribute the purchase to your kind, harmless Mom because, after all, “she is getting on in her years and ….”

You tell someone you have “Crohn’s Disease” and they ask if it is contagious.

You tell someone you have “Crohn’s Disease” and they ask, “Is that ‘the Bathroom Disease?’”

You actually understand your Health Insurance policy.

Your mail is mostly comprised of Medical Bills, Explanation of Benefits (“EOBs”) forms from your Health Insurer and Dunning Notices regarding said Medical Bills.

You hand out Holiday Gifts to the Office Staffs of your various doctors for simply doing their jobs so you are in their good graces going forward.

You prefer certain flavors of Barium over others.

During a Flare-up, your joints, fingers and toes feel like Voodoo Dolls randomly pricked by a painful needle controlled by your main nemesis from high school or summer camp.

You sometimes get gas that’s so powerful it literally starts to lift your butt off the toilet bowl when you expel it.

You know to shave both arms for the intravenous lines before being admitted to the hospital.

You’ve taken Prednisone and have not been committed to a mental institution.

You’ve taken Prednisone and at one time or another have been told by friends or loved ones that you need to be committed to a mental institution.

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Celebrities with Crohn’s Disease – There’s only 10 ?????

Posted on November 29, 2011 | 4 Comments

What is Crohn’s Disease?

Living with a painful, incurable and auto-immune chronic illness like Crohn’s Disease or Inflammatory Bowel Disease (“IBD”), is like giving your apartment keys to the most annoying, irritating and distasteful people you have ever come across in life knowing they may stop in and come live with you at ANY MOMENT, without ANY NOTICE and stay for as long as they want.  And like the painful cramps, unpredictable hospitalizations, countless surgeries and medications with lethal legal disclaimers so long and comprehensive they make merely crossing the street seem like modern day warfare, these folks can now stop by your apartment at any time to disrupt your life with no end in sight to the devastation and uncomfortable feelings they cause.

Celebrities & Crohn’s Disease

I would feel so much better about my personal plight if I knew that George Clooney “felt my pain” and despite Crohn’s Disease was still able to appear to be such a dashing and charming gentleman.  So, I did a few searches on the Web to find out which Celebrities have been brave enough to face the untrue and unfair “Bathroom Stigmas” associated with Crohn’s Disease to go on and offer some hope to their fans or just to ordinary people who don’t want to feel so alone in their seemingly private battles with such a devastating illness.  Since we live in a society where Fame and Pop Culture are so influential that they affect public perception of a disease and thus the amount of money raised to finding treatments and even a cure, I thought it would be interesting to see if there is a list of such “hip” IBD folks.  Hey, if Clooney has Crohn’s, then I’m sure even Colitis will soon be cool to add to the lexicon of hipsters.  After all, there are many courageous celebrity cancer patients such as Lance Armstrong (i.e. testicular cancer) and Farrah Fawcett (i.e., anal cancer) who have used their fame to shine a light on other very sensitive diseases where none had shone before.  Thankfully, many other celebrities have since followed suit offering their support and persona to a wide array of causes such as Diabetes, Rheumatoid Arthritis and several other similar serious chronic illnesses.

George Clooney does NOT have Crohn’s Disease

As far as I could tell from my research, George Clooney DOES NOT HAVE CROHN’S DISEASE.  I’m glad for him but secretly I must admit I would have had a lot of fun working on fund-raising events with him as I know he’s the type of “Stand-Up Guy” who would do all he could to help.  But keep in mind that a person’s fame and its value, duration or related employ-ability, unfortunately, can be adversely affected by fear, for example, of the public’s perception that a sexy leading lady might have Crohn’s Disease and thus need to use the bathroom in the middle of seducing the Actor playing James Bond!  By analogy, think of what happened to actress Anne Heche’s career as a beautiful seductress after she told the world she was a lesbian?  Alright, that is not the best example because she also said she was at times two different people and I believe she told talk show Host Larry King that she, or her other half, also communicated with Martians, but you get my point.

I’ve worked in the entertainment industry as an attorney and business affairs executive so I know that many people understandably suffer silently with image-debilitating illnesses such as Crohn’s Disease due to fear of reprisals from decision-makers or sponsors who would cut their professional ties and financial support if they knew that these celebrities were mere mortals and thus subject to all the medical problems which befall the rest of society.  You’d think that some sponsors would cleverly capitalize on this humanity “relate-ability” factor but “Sex Sells” and most times nothing short of perfection is demanded for marketing campaigns.  For example, picture a TV commercial in which Clooney and Brad Pitt share a private moment over some Blue Label Johnnie Walker Scotch Whisky in which Pitt turns to the camera and says, “Don’t let Crohn’s Disease stop you from enjoying life.  It may take me longer to drink due to bathroom runs and I do get a little more gas in the morning, but Johnnie Walker Blue is what I drink when I like to chill.”  Wow, would that would raise awareness of Crohn’s, but it would also affect the types of Scripts Brad Pitt receives after that particular Public Service Announcement for Crohn’s Disease goes public.  (Note:  I used Clooney and Pitt SOLELY as a JOKE and I have NO IDEA if either has Crohn’s Disease.)

Celebrities and “Underground Crohnies”

Please understand that I am not at all judging some celebrities for simply keeping their private lives “private” because I understand why, if need be, they must be “Underground Crohnies.” I just wish life were different and that fame and decision-makers were more understanding of human frailties.   In any event, below is the list of the most prominent celebrities my November 29, 2011, Google Search revealed who have gone public with their Crohn’s Disease.

It is a very funny and disease-revealing list because there has to be more than TEN (10) celebrities IN THE WORLD with Crohn’s Disease (and in some cases I even had to stretch the label of “celebrity” a bit just to come up with 10).  Regardless of the number, I thank them and only hope they serve as role-models for other people and celebrities in highly visible positions to bring attention to Crohn’s Disease (and other challenging chronic illnesses) so that the general public doesn’t just see it as an embarrassing illness that must be hidden like some lethal bathroom plague.

Celebrities with Crohn’s Disease

Cynthia McFadden – ABC News correspondent and “Nightline” Anchor.

Frank Fritz – One of the stars of the History Channel’s reality series American Pickers, is an antiques treasure hunter who has battled Crohn’s Disease for more than a quarter century.

Mike McCready – The lead guitarist for the band, Pearl Jam.

David Garrard – Former starting quarterback for the NFL’s Jacksonville Jaguars.

Mary Ann Mobley – The Brandon, Mississippi beauty who was crowned Miss America in 1959.

Shannen Doherty – Former star of the TV show, Beverly Hills, 90210, told Star magazine in 1999 that she had been diagnosed with Crohn’s disease.

Dwight D. Eisenhower - The 34th President of the United States was diagnosed with Crohn’s disease in 1956 and required surgery for the condition just six months before his reelection bid.

George “The Animal” Steele – His given name is William James (Jim) Myers, but professional wrestling fans know him as George “The Animal” Steele. His career in the wrestling ring spanned more than two decades, culminating in his induction into the World Wrestling Entertainment Hall of Fame in 1995.

Thomas Menino – Mayor of Boston, Massachusetts.  The longest-serving Mayor in the history of the city.

Kevin Dineen – 19-year National Hockey League (“NHL”) veteran career who is now coach of the Florida Panthers.

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

Posted on October 5, 2011 | 4 Comments

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.

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Posted in Bathroom Stigmas & Crohn's Disease, Breast Cancer, CCFA, chrones, chrones disease, Crohn's, Crohn's Disease, Crohn's Disease Mainstream Awareness, Crohnie, Crohnies, Crohnology, Marketing Crohn's Disease

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2 Minute Drill – Managing Psychological Aspects of Crohn’s Disease

Posted on August 10, 2011 | Leave a comment

A Concise Video a little over 3 Minutes in length that via an NFL Football Metaphor communicates How a Person can successfully Manage the Psychological Effects of Crohn’s Disease.  This includes addressing the inaccurate bathroom stigmas associated with Crohn’s Disease.

Parts of this Video are used in the recent launch of a Crohn’s Disease “TV Channel” on one of the Web’s most popular Health Portal Sites, WEGO Health.

It would have been very cool if the Video was under 2 minutes in length and thus consistent with the Football Metaphor but with TV Timeouts and whatnot we all know that the NFL 2-Minute Drill takes 5 minutes anyway!!!

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Posted in 2-Minute Drill Video Series, Bathroom Stigmas & Crohn's Disease, Chronic Illness, Coping Strategies, Crohn's Disease, Managing Chronic Illness, Psychological Effects of Crohn's Disease, Support Team

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