For those faithful readers of my Blog and my other Health Care Social Media (“HCSM”) Platform journalistic contributions, I apologize for again writing about this “Crohn’s Disease Warrior Patrol” but something magical is happening relating to it and I need to share the experience. It quickly went from an idea to a Blog entry to an aspiration and then to reality, when a very sick hospitalized 9-year old boy named Damon was understandably having difficulties coping with having to deal with two (2) Ostomy Bags while being treated for a variety of emergent digestive disorders. More specifically, I had coincidentally recently written a Blog entry about the idea of this Crohn’s Disease and Inflammatory Bowel Disease (“IBD”) “Hospital Patient Visitor Ambassador Program” when I was contacted via Facebook about Damon and how it would be great if I could find someone with an Ostomy who could come with me to visit with him in the hospital to cheer him up and let him know that there is life after such an experience or diagnosis. That’s when I met up with Marisa Lauren Troy and Jeffrey LeVine and we had that lovely visit with Damon last Sunday, December 30, 2012, at a Children’s Hospital in Westchester, NY. Since then, Damon’s spirits are MUCH better and it seems his physical problems are also beginning to improve.
Overwhelming Encouragement & Participation by “Crohnies” and “IBDers”
Once we began to post pictures of our visit with Damon, I began to receive emails and HCSM communications from Crohn’s and IBD patients from ALL OVER THE WORLD encouraging me to move forward ASAP because they saw this as a wonderful response to a sorely needed service. Everyone seemed to remember the horrors of their hospitalizations and the terror they would have avoided had they been visited by veteran “Crohnies” and “IBDer” folks like me, Marisa and Jeffrey. I was overwhelmed by not only the sheer amount of messages and HCSM postings but also by the 100% POSITIVE and ENCOURAGING nature of each and every message. I felt like I was witnessing the moment when someone’s Chocolate met someone else’s Peanut Butter and Reese’s Peanut Butter Cups were born! It was a warm feeling knowing that I had conceived something that actually made a difference for hospitalized Crohn’s and IBD Patients, their doctors, hospitals and various related organizations such as Pharmaceutical Companies, and Crohn’s and Colitis Foundations, Chapters and Charities. I was also constantly reminded of the “business side” of forming the “Crohn’s Disease Warrior Patrol” when incredibly altruistic people in HCSM contacted me with invaluable knowledge and experience encouraging me to seek funding via “Crowd Funding” methods on the Web such as Kickstarter.com, Indiegogo.com and MedStartr.com.
Moving forward with Crowd Funding, Sophisticated Website and forming a Non-Profit
With only so many hours in the day and me having to also battle my own Crohn’s Disease issues, it’s been quite the challenge to keep up with the seemingly 24-7 barrage of people from all over the WORLD who have already signed up to be veteran members of the Crohn’s Disease Warrior Patrol. Accordingly, I had no choice but to make this my top priority so you may not hear from me as frequently while I fill out forms, design a Business Plan and produce a Video which conveys the genuine need for the Crohn’s Disease Warrior Patrol and the intense participation interest already articulated by Crohn’s and IBD veteran or “warrior” patients. While more ideas come to me whenever I can “steal away” some time from my computer to reflect upon this exhilarating experience, set forth below are my main objectives:
- Hire my Web Designer to customize the present, very basic, website so that veteran patients can be matched with interested hospitalized Crohn’s Disease and IBD patients by zip code, while at the same time collect important data about the hospitalized patient so that hospital visit matches are age and Crohn’s/IBD condition/issue appropriate;
- Professionally promote the website and service so that veteran Crohn’s and IBD patients Sign-up to be “warriors” and interested hospitalized Crohn’s Disease and IBD patients are aware of the “Crohn’s Disease Warrior Patrol” service;
- Professionally promote the website to the various Crohn’s, Colitis and IBD Chapters and Charities and to the National Healthcare Media to raise the public’s awareness of the potentially severe and disabling aspects of Crohn’s Disease and IBD;
- Through the growing National Publicity of the “Crohn’s Disease Warrior Patrol” and due to certain connections I have from practicing Entertainment Law for several years, recruiting certain Celebrities to make surprise inspirational personalized phone calls to hospitalized Crohn’s and IBD patients, where/when appropriate, and if possible;
- Create memorable promotional giveaways for hospital visits such as a “You’ve just been visited by the Crohn’s Disease Warrior Patrol” t-shirt to give to hospitalized patients;
- Develop an aspect of the “Crohn’s Disease Warrior Patrol” which generates money (e.g., selling t-shirts, mugs, educational speaking events, etc.) for the purposes of paying operating expenses and to donate the rest to help finding a cure to Crohn’s Disease and IBD; and
- Creating an HCSM platform area of the “Crohn’s Disease Warrior Patrol” which educates Crohn’s and IBD patients, old and new, about the latest diagnostic and treatment advancements.
My Hospital Visit this week which galvanized my Determination
This past week I made a hospital visit to a “friend of a friend” who, as I was to pleasantly learn, is like a kindred spirit. We like the same music, went to the same Summer Camp as kids and now, both unfortunately know what it’s like to languish in a hospital for weeks at a time with Crohn’s Disease diagnosis difficulties and Treatment Plans no more sophisticated than compassionately treating pain and hoping a miracle happens and all the Crohn’s symptoms magically go away. I sat with this patient for almost two (2) hours and we bonded over many things but when she asked me my opinion I couldn’t help but be candid when I told her she’s being seen by the wrong doctor if after two (2) LONG hospitalizations within the past 3 months her doctor has no specific diagnosis and no Treatment Plan. She’s very resilient, smart and has a great husband advocate who totally understood my point so plans are in the works to soon get her to a New York City doctor for a 2nd opinion.
It’s nothing personal against her present Long Island doctor and it’s not my bias toward Mt. Sinai Hospital in New York City but it has been my experience that diagnosing and treating complex Crohn’s Disease cases like hers, and mine, come down to numbers: i.e., the greater the number of these types of complex Crohn’s Disease cases seen by a doctor, the greater the likelihood of a quick, accurate and effective diagnosis and treatment. In the New York City gastroenterology practice I was referring her to, they see more Crohn’s Disease cases than any other medical practice in the world. With that increased patient interaction comes exposure to the strangest and most complex of Crohn’s Disease cases and that provides the patient with the best chance of being diagnosed and treated most effectively and efficiently. Once she committed to implementing this 2nd opinion plan, she became hopeful that she will soon get an answer. I was proud for having contributed to that new outlook because there may be nothing worse than lying in a hospital bed with such severe pain and obvious Crohn’s Disease or IBD symptoms only to be doubted by some medical professionals who get frustrated when nothing tangible appears on diagnostic tests to explain the patient’s uncomfortable plight and they then turn to the patient as the possible cause because nothing else makes sense. That is a logical approach but it has proven time and time again to be counter-intuitive to Crohn’s Disease and IBD cases so I find it to be unacceptable. Accordingly, my parting words to her and her husband were to be persistent and consistent in seeking answers, a diagnosis and a Treatment Plan.
The Unintended but Barbaric Nature of some Crohn’s Disease Hospitalizations
Not only did last week’s Long Island hospital visit add further validation for the need of a Crohn’s Disease Warrior Patrol, but it also reminded me of many of my ill-fated hospitalizations and that made me think about the thousands of other similar tortuous Crohn’s Disease and IBD difficult hospitalizations. Please understand that I do not blame anyone for this and I only appreciate the determined and dedicated efforts of all the medical professionals who try to help mitigate the inherent difficulties of a Crohn’s Disease or IBD hospitalization. It is just that Crohn’s Disease and IBD will always be “Invisible Illnesses” as demonstrated by the well-intended, but almost barbaric, manner in which Crohn’s patients are diagnosed & treated. Most healthy people or even loved ones of Crohn’s and IBD patients don’t know this because they logically assume there’s a definitive “test” and if it’s “positive” – you’ve got Crohn’s or IBD. NO, nothing can be further from the truth. You often “present” at the hospital, or more likely the emergency room, with such painful symptoms that diagnostic tests can’t even be conducted on you until you’ve been on horrific (i.e., from a side-effects perspective) Intravenous anti-inflammatory medications (i.e., Prednisone-type drugs) for a few days. Then, because Crohn’s Disease is almost “personalized” in how it affects each patient, the doctors often must work in the “grey” when their scientific training tells them to look for “black and white.”
Sometimes you get lucky and a Picture (i.e., X-ray, MRI, CT scan, etc.) tells the story. But more often than not, you are all alone in that grey area fending off suspect looks from medical professionals, who should know better based on years of Crohn’s Disease and IBD cases being perplexing. In a worst case scenario, if some doctors can’t find what they need in order to substantiate their hospitalizing a Crohn’s or IBD patient, they start “blaming” the patient for either having these strange, intermittent and inconvenient symptoms, making them up or exaggerating them. That’s when Crohn’s and IBD patients must be persistent AND consistent in seeking a Diagnosis and a Treatment Plan. It’s even okay if a doctor admits he’s stumped and refers the patient to a different gastroenterologist who sees more complex cases and thus might be able to provide that diagnosis and treatment plan – even if it’s merely a “trial and error” one. This is why I always tell Crohn’s and IBD patients that if they are not “collaborating” with their doctors then they are either not communicating properly or they need to be treated by different doctors.
“Network Television” Crohn’s Disease “Biologic” drug ads make IBD seem as innocuous a Disease as Erectile Dysfunction and that is a DISGRACE
What typical people also don’t know is that the drugs advertised on Network Television which portend to “treat” “Severe Crohn’s Disease” and IBD are actually not that successful and, more importantly, they “can” cause side effects which can be lethal (e.g., I almost died from one such “Biologic” medication which eventually caused me to have to go on Chemotherapy to treat a possibly fatal Lung Condition known as “B.O.O.P.”). Even if they are not life-threatening, the side effects can be as severe as many of the Crohn’s Disease symptoms. So why would a Crohn’s Disease patient take such drugs? My answer was: “I have no other choice because my body can’t sustain more bowel surgery.” But that was several years ago and unfortunately too many more Crohn’s Disease patients have suffered from these side effects such that my blood boils when I see a TV ad for one of these drugs because they casually stigmatize Crohn’s Disease out to be no more than an Erectile Dysfunction problem, which a pill can substantially resolve. That’s just not true with Crohn’s and IBD as the success rate of the these Biologic drugs varies from 30% to 60% and even those numbers are deceiving because their “success” (i.e., placing the Crohn’s Disease patient into remission) may only last for a few years and then the devastating side effects may set in. That Crohn’s Disease patient could then have additional autoimmune diseases and, as a result, much more serious and expensive medical problems.
There has been no tangible proof of a direct scientific link of these Biologic Severe Crohn’s Disease treatment drugs to poor success rates and devastating side effects and, in my humble opinion, I think that keeps these Pharmaceutical Companies selling “hope” in the form of a drug. But if you converse with enough Crohn’s Disease and IBD patients through HCSM, you will encounter horror stories that will bring tears to your eyes. What started out as Crohn’s Disease turns into several more autoimmune diseases and some patients, like myself, are left with such severe and unpredictable joint pain and decreases in respiratory capabilities that there are days we cannot get out of bed. Thus, the cost of these glorified Biologic drugs advertised on TV to treat Severe Crohn’s Disease often comes at a price which no-one can afford.
Please SIGN-UP for the Crohn’s Disease Warrior Patrol and help me at least Raise Awareness of the seriousness of Crohn’s Disease and IBD
If you have Crohn’s Disease or IBD, I know you “get” the importance of what I am writing about. Besides helping Crohn’s and IBD patients through difficult hospitalizations, my goal is to raise the awareness of the seriousness of Crohn’s Disease and IBD so that in the worlds of Research and Fundraising they are given the same amount of respect and attention as such devastating diseases as Breast Cancer, Aids, Multiple sclerosis, Parkinson’s, Alzheimer’s Disease, Rheumatoid Arthritis, Amyotrophic Lateral Sclerosis (“ALS”), etc. Maybe then, from information acquired via global patient-to-patient communications, a Cure for Crohn’s Disease and IBD will emerge. Until then, please be patient while I set-up the Crohn’s Disease Warrior Patrol and if you haven’t SIGNED-UP yet as a veteran or “warrior” Crohn’s Disease or IBD patient, please do so by visiting CrohnsDiseaseWarriorPatrol.org. Please provide as much information as possible which will enable me to create a database to make the best matches of veteran patient to hospitalized patient. Then, once I get a Crowd Funding website up and running, I will spread that word and Donations would be greatly appreciated so that I can start working on achieving the articulate objectives stated above.
Thank you for your interest, support and incredible encouragement. The global possibilities of HCSM make it a technologically-powered grassroots Patient Movement and I intend to utilize it to help patients with Crohn’s Disease and IBD get the attention they deserve.