Participating in “crohn’s disease – The Movie”

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One of the charitable purposes of the 501 (c) (3) Non-Profit Charitable Foundation I started (i.e., the Crohn’s Disease Warrior Patrol or “CDWP” for short) is raising mainstream awareness about Crohn’s Disease, its broad spectrum, the severity of its more pervasive cases and the Catch-22 nature of its most effective treatments.  Through various endeavors of the CDWP, we want to communicate to the world that having an incurable, auto-immune, chronic disease like Crohn’s can have devastating physical, psychological, emotional, social, professional, financial and familial effects.  To do this in a way which most effectively educates the public about the “Inflammatory Bowel Disease” called Crohn’s Disease, I think it is necessary to explain the relative differences and nuances of related Inflammatory Bowel Diseases such as Colitis, Ulcerative Colitis, Crohn’s Colitis and the “catch-all” umbrella acronym which these illnesses seemingly all fall under, i.e., “IBD”.

The Medical Expert Perspective

While each technically is an IBD, they can be very different in terms of symptoms, manifestations and treatments.  This is why a top Gastroenterologist will be directly addressing these issues in the Film and also explaining the proper usage of the term “IBD” because some use it as shorthand in “Inflammatory Bowel Disease” fundraising circumstances (and get criticized for doing so by patients who justifiably feel their particular IBD deserves specific mention) while others aren’t really sure what “IBD” means relative to the specific name of each of the aforementioned Inflammatory Bowel Diseases.  For example, if a person donates money to an IBD charity, are people with Ulcerative Colitis going to benefit from it?  What about Crohn’s Disease patients?  And so on and so on.

“You can’t make a good film out of a bad script. It’s impossible. You can make a bad film out of a good script. You can screw that up pretty easily.”  Actor/Director/Producer, George Clooney

This understandable “Patient Passion” about specific Inflammatory Bowel Diseases has surprisingly made explaining this CDWP Film project to fellow patients sometimes complicated in that I have been posting information about the Film seeking volunteers for interviews and everyone wants to know if their particular Inflammatory Bowel Disease will be included.  Because of the above-described close association of these Inflammatory Bowel Diseases, I have told people that I intend to cover these major Inflammatory Bowel Diseases and thus I want to interview patients with any of these diseases even though the “tentative” or “working title” of the Film is “crohn’s disease – The Movie.”

This apparent WORKING TITLE contradiction has actually angered some people in the different Health Care Social Media platforms and strangely put me on the defensive when all I am trying to do is raise awareness of Inflammatory Bowel Diseases.  To that end, I will never understand how people battling essentially the same daily fights and medical bills related to their respective Inflammatory Bowel Disease can castigate someone who is trying to help them by raising awareness of ALL these Inflammatory Bowel Diseases, especially when the person doing the heavy lifting has a pretty good track record of successfully performing a variety of advocacy work and for many years dedicating himself to helping people suffering with these Inflammatory Bowel Diseases.

I was actually very upset at what felt like a “public lashing” last week on one particular social media platform until I started to receive instant emails from people supporting my efforts and commiserating with my situation.  No matter what I wrote in response to short-sighted diatribes and production edicts, I was wrong or accused of “attacking” people or ignoring their disease.  As I am presently undergoing Chemotherapy for a Crohn’s Disease-related lung problem and must exist each day in world of complete medical uncertainty until I am diagnosed for this rare condition (IF I can be diagnosed), I must avoid such “toxic” environments.  That’s why those supportive instant emails moved me so much.  For that support, and you all know who you are; THANK YOU.

Besides the unpredictable ramifications of not knowing what people will say when I interview them, I am intimately familiar with the unique mystery of the creative process which Mr. Clooney alludes to above when somehow a good script turns into a bad movie.  With documentaries, you don’t even have the luxury of having a script to screw-up and your storytelling materials are in other people’s brains until they evolve and are retrieved from interview to interview.  I guess people who criticize this Film Project before it even starts probably aren’t familiar with these almost insurmountable variables so I respect their passion but I must move forward based on the preparation I have been doing.  Also, prior to being disabled by Crohn’s Disease, I was an entertainment attorney and film producer and I became adept at addressing the daily ever-changing variables involved with shooting, editing and producing a film.  In that regard, my present disability is just another variable to contend with.

I want to live to see the day when Crohn’s Disease is discussed as comfortably as Breast Cancer.

I think a documentary about Inflammatory Bowel Diseases will be more compelling when its title includes a potentially severe and disabling disease which most people, even some with the disease, don’t know how to spell properly!  There is some sarcasm in the preceding statement but I’ve experienced it too many times to not try and take advantage of it for purposes of maximizing the Film’s marketing potential. People tend to know someone with an Inflammatory Bowel Disease and when they hear about someone with Crohn’s Disease they tend to “recall” a cousin or nephew who has it and that the person is always sick.  They don’t know the specifics but they do know it has been life-changing or life-altering for the person they know and love.   Still, they/we just don’t talk about Inflammatory Bowel Disease at dinner parties and whatnot because it might evolve into an empathetic conversation about gas pain, stomach cramps, bowel movements and diarrhea.  Yet, the same dinner conversation about Breast Cancer is quite common.  I want to live to see the day when Crohn’s Disease is discussed as comfortably as Breast Cancer.  This is another purpose driving the making of this documentary.

Moving Forward

I am interviewing a colorful and extremely well-respected Medical Expert to define and contrast the various diseases and I am “following” a patient having her 2nd Small Bowel Resection to demonstrate the trials and tribulations of a, or the, typical surgery.  (I will probably compile a “Video Trailer” of sorts at that point and post it on the CDWP website to “visually” explain the Film Project for the purposes of soliciting Donations since the CDWP is now a 501 (c) 3 Charitable Foundation and donated money is tax deductible.  Access to more money will enable me to get this CDWP Project completed faster and marketed more aggressively.  In that regard, if you would like to make a TAX DEDUCTIBLE Donation now, please CLICK HERE and make the Donation via Pay Pal to the email address CrohnsDiseaseWarriorPatrol@gmail.comYou can also MAIL a check made payable to “Crohn’s Disease Warrior Patrol.”  The mailing address is: Michael A. Weiss, Executive Director, Crohn’s Disease Warrior Patrol, 184 Zeppi Lane, West Orange, NJ 07052.

Then I will ask the volunteer patients approximately SIX (6) to EIGHT (8) questions but I will ask each interviewee essentially the SAME questions because I think the viewer’s “consumption” of the compelling contrasts between patient similarities and differences will tell the Story of this documentary.  That said, the creativity in telling this story ultimately lies in the editing after I have accumulated a healthy “bank” of interviews, answers, knowledge and footage.  Then the finished product can be submitted to Film Festivals in the “documentary” category.

Tentative Questions for Volunteer Patients being interviewed

Below are the tentative basic Patient Interview questions but they may be tweaked after I perform a thorough interview with the Film’s aforementioned Medical Expert.  Additionally, in certain circumstances of special interest, questions might be asked such as: in a situation where a patient’s failure to maintain health insurance prevents him or her from getting monthly Remicade treatments;  when a patient has success with alternative medicine; when their journey to a correct diagnosis was too long and became a medical problem all unto itself; or when the side effects of successful Inflammatory Bowel Disease medications/treatments cause even more significant medical problems such that the drug or treatment is no longer an option for that patient.

  1. How long have you had Crohn’s Disease, Colitis, Ulcerative Colitis or Crohn’s Colitis?
  2. How were you diagnosed and how long did it take?
  3. How has your disease been medically/surgically treated/managed?
  4. What is your typical day like with the disease?
  5. What medications work best for you?
  6. How has it affected your life?
  7. When you hear the terms “Crohn’s Disease,” “Colitis,” “Ulcerative Colitis” or “Crohn’s Colitis” or “Inflammatory Bowel Disease,” what comes to mind?

If you are a Patient interested in being Interviewed, PLEASE contact me via email at MichaelWeiss@HospitalPatient.com with your Name, Phone Number, Location, Disease Diagnosis (i.e., Crohn’s, Colitis, UC, etc.) and with any “special circumstances.”  Please put “Crohn’s Disease Video Project” in the Subject Heading (no quotes).  Thanks.

We are looking for Patients ALL OVER THE GLOBE

Since I am located in the Northern New Jersey area in the United States and in-person interviews will look best, I’d like to conduct a few in the New York, New Jersey and Connecticut metropolitan areas.  But I’m also interested in communicating the global scope of these Inflammatory Bowel Diseases so please don’t let a distant locale get in the way as a Phone Interview or a Skype Interview will be just fine.  I will just need a high-pixel Picture of you to put on the High-Definition screen each time you are talking (for an example please see this  KevinMD interview I conducted a few months ago).   I will get back to you within a month or so as I am presently accumulating communications from many patient volunteers.  I will then pick several patients and/or compelling answers from many different patient interviews as I am interested in also conveying the different degrees of disease “severity” (as that term is subjectively defined/interpreted by each patient) and thus the broad spectrum nature of a disease like Crohn’s, the different medication regiments, professional effects, life effects, etc.

Music Submissions to be used in the Film

I will be looking for ORIGINAL Background Music to softly play behind some aspects of the Film footage.  Ideally, I am looking for mellow “bluesy” type of instrumental music which conveys different moods (depending on the footage) and an overall cool and genuine “vibe” so that these diseases are taken as seriously as other life and lifestyle changing illnesses.  I can’t pay you any money because everything the CDWP has is going into every other aspect of this Film Project but I will provide you with a prominent Screen CREDIT and I will make sure to use my Social Media presence (Blog, Facebook, Twitter, Google+, etc.) to promote you, your band and your music.  If you are a Musician interested in contributing your ORIGINAL MUSIC to the Film, PLEASE contact me via email at MichaelWeiss@HospitalPatient.com with your Name and Contact Information.  I am interested in both Original Music already made AND Original Music written and performed specifically for the Film.  Please put “Crohn’s Music” in the Subject Heading (no quotes).  Thanks.

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