Dear London-based IBDers:
I will be staying in a downtown London hotel from June 7th to June 10th and if you are interested in being interviewed for a Documentary my non-profit is producing on raising global awareness of the potential severity and pervasiveness of Crohn’s Disease and Ulcerative Colitis, I would very much like to make your acquaintance and I encourage you to contact me. My Twitter Handle is @HospitalPatient and you can email me directly from this Blog at firstname.lastname@example.org.
“Patients helping other IBD patients is often the best medicine.”
By way of brief background, my Inflammatory Bowel Disease (IBD) non-profit 501 (c) 3 charitable organization called “Crohn’s Disease Warrior Patrol” [the “CDWP“] has been working on various media projects aimed at raising global awareness of the potential severity and pervasive nature of IBDs like Crohn’s Disease and Ulcerative Colitis. One ongoing project has been a Patient/Caregiver-Driven Documentary, “From the Patient’s Perspective …,” in which various IBD patients, their Caretakers, friends, family members and others affected by their disease share relevant insights about the medical, psychological, emotional, financial, familial, social and professional effects of IBD, its treatments and its peripheral manifestations. We believe this more mainstream method of examining the seemingly ubiquitous and personalized challenges posed by Crohn’s Disease and Ulcerative Colitis stands the best chance of reaching the most people who possibly have never even heard of “Crohn’s Disease.” Furthermore, we also believe this Documentary best represents the simple premise upon which the CDWP is predicated: “Patients helping other IBD patients is often the best medicine.”
Why trust ME with your IBD stories?
For those of you who are not familiar with my Crohn’s Disease advocacy efforts, I have had a case of “Severe Crohn’s Disease” for approximately thirty (30) years and have undergone approximately twenty-five (25) Crohn’s-related surgeries and done plenty of time in hospitals all over the United States, during my two hundred-plus (200+) formal admissions and/or emergency room episodes. Throughout this time when my disease was at its peak of unpredictability, I had to contend with law school, business school and then, coincidentally, a variety of experiences surrounding film-making, as both an entertainment attorney and independent film producer. When my doctors became concerned about the aggressive nature of my “obstructional” Crohn’s Disease, they sought practically every available medicinal method to stave off more surgeries. That’s when they introduced me to the lovely world of potent immunosuppressants and immunomodulators like the biologics. That’s also when the peripheral manifestations of my Crohn’s Disease became more pronounced and eventually conspired with the gastrointestinal effects of my disease and rendered me systemically disabled in 2010.
In short, during the worst of it there appeared to be a logical nexus between the combination of my delayed Anaphylactic reaction to the biologic drug Remicade and the severe respiratory conditions I began to experience soon after being on the biologic drug Humira for several months such that these potent drugs caused such a severe inflammatory lung condition of first impression that I could not talk and breathe at the same time. The resulting “shortness of breath” made me worry about each and every second of my breathing process. Many times I thought I would die in my sleep because each breath took so much effort and I was concerned I might “forget” to breathe while sleeping.
Eventually it was my genius gastroenterologist, Dr. Mark L. Chapman, who saved my life when all sorts of steroids and super-antibiotics failed. But it required two (2) intense rounds of “T-Cell” chemotherapy which alleviated the lung problem but, naturally, the chemo caused some other lifestyle-altering medical problems. To this day, no pathologist in the United States has been able to identify the pathology of the two (2) surgical lung biopsies conducted on me which yielded significant amounts of inflamed, necrotic lung tissue.
Crohn’s Disease has also caused me to undergo two (2) Cataract surgeries in my early 40s and I now suffer from such severe “Dry Eye” that in the recent past I cut my Cornea simply by blinking my eye when I awoke from sleep one night to use the bathroom. Then last year at the relatively young age of 51, I required Left Hip Replacement Surgery. It was successful but due to my body’s inefficient way of thwarting “inflammation,” I am still in physical therapy and battle severe pain daily. If you have IBD and you’ve had to take several different drugs to stay out of the hospital and/or to ward off surgery, then you are intimately familiar with these challenges. That said, I still feel LUCKY compared to other IBD patients I have been privileged to meet.
Please understand I do not list my IBD experiences for anyone to feel sorry for me. They are only posted here for credibility purposes. Moreover, I look at each and every new medical problem I encounter as a result of IBD as “content” for me to share on the internet in the various health care social media platforms so others can learn about it and hopefully avoid it. In 2001 I wrote a very successful and funny book about my experiences with such a severe (and often misunderstood/misdiagnosed) case of Crohn’s Disease called, “Confessions of a Professional Hospital Patient.” While the book is very informative and instructive about the “hospital patient experience,” many people have told me, and told others, that it is “laugh out loud funny” and they find that shocking given the underlying subject matter. But I’ve learned to use my sense of humor to ensure Crohn’s Disease only affects my body and not my mind.
Thankfully, the book continues to sell and ever since 2010 I have become a full-time IBD advocate when my health permits me to do so. In that regard, I try to contribute to active IBD social media groups every single day even if that means giving out my telephone number to a Crohn’s patient near to my age who is anxiety-ridden about his fast-approaching 30-year high school reunion because many of his friends have become titans of industry and even celebrities when “all he has done” is battle Crohn’s Disease. I had no idea what to tell him when I gave him my number, as I share some of those same anxieties, but I knew that when we spoke we would laugh at what we’ve both been through and thereafter there’d be an unbreakable bond between us. I hoped to leave him feeling like he’s been successful at a very difficult task, namely, managing his Crohn’s Disease and carving out a “happy life” for himself.
Every time I interact with IBD patients, especially on the telephone, I learn something new about the disease or how to better cope with its challenges. This always leaves me feeling an unspoken kinship with other IBD patients that: WE ARE ALL IN THIS TOGETHER. In keeping with this patient unity objective, the “Crohn’s Disease Warrior Patrol,” dons a rather corny name because it serves both a literal purpose and the required state-of-mind to persevere. Its actual purpose is matching experienced IBD patients with newer ones who seek disease information which even the most compassionate of medical professionals cannot convey either due to time constraints, their ethical requirement to remain objective or because of any number of many other reasons. But the CDWP also represents the “patient state of mind” necessary to not only meet all the medical challenges but also to share with newer IBD patients what is learned during that process to offer them a “been there, done that” perspective. Doctors can only do so much with such a mercurial disease so patients must help each other and create an environment in which: “Patients helping other IBD patients is often the best medicine.” It took me 20 years with Crohn’s Disease to realize this and I don’t want any other IBD patients to have to wait that long to feel as good, and live as well, as is possible. To that end, I can only hope the person attending the high school reunion gave himself the credit he deserved for so bravely managing and coping with his disease.
I want the World to better understand IBD
I just want the world to hear from IBD Patients. I want the world to hear about gastroenterologists who ask their patients which biologic drug they should start with; such that the patient then posts that query in a Facebook IBD Group looking for the answer from experienced patients, each of whom have completely different DNA and also different mitigating or agitating disease factors; not to mention that each biologic drug, whether it is Remicade, Humira, Cimzia or Entyvio, is technically a DIFFERENT DRUG and is designed as such FOR A REASON. I want to convey some of the hospital horrors such as when I wound up in the same New Jersey emergency room 3-times in one (1) week at approximately 3-AM only to encounter the same Armani-slippered Covering Doctor who got so frustrated at the inconvenience that due to his arrogance and condescending tone he refused to LISTEN to me and MISSED EIGHT (8) INTESTINAL OBSTRUCTIONS! (This was revealed the very next day when I had to travel into New York City to see my main gastroenterologist, Dr. Mark L. Chapman, and he ushered me to the only radiology practice in town which still performed the unbelievably uncomfortable “Enteroclysis” test. But the results saved my life by prompting emergency surgery.)
Dr. Mark L. Chapman has been my main gastroenterologist since I was formerly diagnosed in 1984/85. He is one of only three (3) gastroenterologists trained by Dr. Bernard Burrill Crohn who’s still practicing. Dr. Chapman is the Medical Expert for the Documentary. Below is an example of some footage I recently shot of him.
While there are doctors who regularly admit the same IBD patients to the same hospitals offering the same treatments indicating ZERO development of a different or, dare I say, possibly effective TREATMENT PLAN which might actually work and there are gastroenterologists who won’t sign off on disability applications unless the IBD patient exhausts every biologic drug available despite him nearly dying from previous similar experiences, there are also INCREDIBLY COMPASSIONATE medical professionals and caregivers who IBD patients interact with and I’d love to hear those stories too. I’d also like to hear about the different ways by which people “cope” and “manage” their disease.
I’m also always interested in what I refer to as the “Diagnosis Journey,” because with Crohn’s Disease, Ulcerative Colitis or Indeterminate Colitis, it can take a long time and involve dignity-deafening experiences because some doctors only act upon “black or white” diagnostic test results even though it has been well-established that “grey” is usually the color of the day. These same doctors often refuse to believe a patient could accurately convey his or her symptoms to supplement these “grey” diagnostic tests because “what can they possibly know?” Call me crazy but experiencing the often painful symptoms of IBD and clutching the tiled floor in a public bathroom to brace yourself for the onset of intolerable pain does give you a certain amount of credence. These doctors make patients “make their case” as if they are “defending their lives.” It is then when a patient’s dignity comes into the picture and I think these types of doctors should be ashamed of themselves.
But you don’t look sick?
I could go on and on but suffice it to say, I simply want the world to hear about the still too often barbaric hospital treatments (like the insertion into the human body of a SIPHON to stave off the effects of intestinal obstructions, which hospitals call an “NG Tube”) and the potent medications which come with possible life-altering side effects yet they are only aimed at silencing IBD SYMPTOMS and are not developed as IBD CURES. I am also interested in how different IBD patients deal with the financial effects of obtaining the best medical care, choose a career given IBD’s unpredictability, decide to seek pain management assistance, etc. Most of all, if people always tell you, “But you don’t sick?” – I want to hear YOUR STORY – especially if you’ve had a rough go of it with any IBD such that your VOICE can help other patients.
I am writing this Post NOW because I will be in a nice downtown London hotel from June 7th through June 10th because I am speaking about Crohn’s Disease and the Crohn’s Disease Warrior Patrol at “Doctor’s 2.0 & You” in Paris, France from June 4th to June 5th. To that end, I figured since I will be in Europe, I would LOVE to meet some kindred spirits in London and add them to the Documentary. Accordingly, if you are interested in sharing interesting stories about IBD which further my contention regarding the lack of global awareness of just how bad IBD can get, PLEASE contact me. My Twitter Handle is @HospitalPatient and email is email@example.com.
I look forward to meeting my IBD British brethren.