The Strangeness of Crohn’s Disease
Like many other chronic illnesses, Crohn’s Disease can be so pervasive that besides the obvious medical discomfort, pain, inconvenience and occasional embarrassment, it can also have devastating psychological, emotional, professional, social, familial and financial effects. Because it is a “broad spectrum” disease, some patients at the other end of the Crohn’s continuum have few and relatively insignificant “flare-ups,” if any. This makes Crohn’s a very difficult disease to initially diagnose and treat since doctors must rely upon the degree and frequency of patient symptoms to fine-tune the most effective treatment. Trial by error has never been more frustrating and painful. Moreover, different Crohn’s patients react differently to the different treatments just as one patient can eat lettuce or popcorn, without incident, while another could wind up hospitalized as a result of eating the same foods. I know, Crohn’s Disease sounds more like a “Soap Opera” than a serious, chronic illness.
Crohn’s is also incurable and an autoimmune disease. Its effects on the immune system make it analogous to that “gateway drug” all parents fear and the many available “effective” Crohn’s treatments aren’t always scientifically-proven. Huh? I don’t mean to criticize the hardworking researchers, volunteers and doctors who THANKFULLY dedicate their careers to finding a cure for Crohn’s Disease, but I have the disease for 30 years and have yet to receive a logical answer as to the reasoning behind the efficacy of drugs like “6MP,” “Imuran” or the various Biological Agents drugs such as “Remicade,” “Humira” or “Cimzia.” Yet, despite the short- and long- run significant medical risks associated with each of the aforementioned, these drugs are routinely prescribed for patients with Severe Crohn’s Disease. They work very well for many patients, not at all for others and still, for other patients, they cause extremely serious medical problems (that’d be me). The term “effective” is also relative in Crohn’s Disease since each treatment or drug therapy seems like a swap of digestive pain and discomfort for some other kind of a more manageable medical problem. In that regard, this sometimes feels like my doctors are “robbing from Peter to pay Paul” except I have to pay to see another medical specialist. But if it is a short term treatment, the price to pay is at least transparent. It is when the treatment works for a longer period of time that there is usually a medical price to pay which could be far worse than having Crohn’s Disease in the first place.
Crohn’s Disease & Nuances of the Snake Venom
Trying to understand Crohn’s Disease and then explaining it to friends and loved ones is like deciphering the rabid appeal of Reality Television or the world’s fascination with Donald Trump. From a medical perspective, however, I think the acceptance of certain contradictions and unknowns of Crohn’s Disease are similar to how snake venom is understood. Most people simply fear getting bit by a venomous snake, as well they should, but as with Crohn’s Disease, the devil’s in the details, as demonstrated by the following explanation written by wiseGeek “clear answers for common questions”:
Snake venom affects the human body in a number of ways, depending on the snake, the type of venom, and how much venom is released. Different snakes produce different types of venom, and even within a snake species, the components of venom appear to vary, depending on geographic location. This is why it is important to be able to identify the snake species involved when one is bitten, so that the appropriate anti-venom can be administered.
There are basically three different kinds of snake venom. Hemotoxic venom is designed to assault the cardiovascular system. Cytotoxic venom targets specific sites or muscle groups, while neurotoxic venom goes after the brain and nervous system. Some snakes combine venom types for a more effective bite, while others only carry one specific form of venom. All venoms contain a complex cocktail of proteins and enzymes.
When someone is bitten by a snake with hemotoxic venom, the venom typically acts to lower blood pressure and encourage blood clotting. The venom may also attack the heart muscle with the goal of causing death. Cytotoxic venom is designed to cause tissue death, which is why some people have to receive amputations after being bitten, because the venom has eaten away the localized tissue. Many cytotoxic venoms can also spread through the body, increasing muscle permeability so that the venom can penetrate quickly.
Neurotoxic venom works to disrupt the function of the brain and nervous system. Classically, such snake venom causes paralysis or lack of muscle control, but it can also disrupt the individual signals sent between neurons and muscles. Such venoms can also attack the body’s supply of ATP, a nucleotide which is critical in energy transfer between cells.
So, what could possibly be GOOD about Crohn’s Disease and then among those good “things,” what’s BEST? Prior to the invention of Health Care Social Media (“HCSM”), I wouldn’t be writing this article, at least as a serious piece. But with the advent and proliferation of HCSM, it became possible to “connect” with people all over the world who also suffered from this Soap Opera of a disease called Crohn’s. Shortly thereafter, Virtual Patient Communities or On-Line Patient Networks for specific diseases started popping up. I stuck my toe in the pool but credibility, candor and diversity, or lack thereof, were always issues for me as I’ve basically seen it all with Crohn’s Disease having endured over 200 hospitalizations and 20 surgeries. In fact, in 2001, when I published my book, Confessions of a Professional Hospital Patient, I insisted that my publisher place the URL, www.hospitalpatient.com, on the spine of the Book because I envisioned having great success with the Book and then creating a Virtual Community of Crohn’s Disease patients who would pool their experiences to help one another. Hope and dreams are important so I just figured I had a good motivational idea that one day would come to fruition but it seemed so unrealistic at the time.
However, my Crohn’s Disease communal aspirations started to come into view when my Book immediately received critical acclaim and the media came a’ callin.’ I did NBC’s “Today Show,” a variety of worldwide cable television shows and a few key radio interviews. One thing led to another and I had soon hired a top literary public relations firm. My dreams were within my grasp, so it seemed. “Larry King Live” and “Oprah” were realistic targets in the Book’s Public Relations Plan so long as I learned how to “sell” during each interview and also kept my Brooklyn candor to a minimum. On Monday, September 10, 2001, I did our first organized national endeavor, a Satellite Radio Tour of all the key morning radio programs in the United States. It went very well, with some interviews airing live, and others taped for broadcast later that week. I was being pitched as a “Professional Patient” of sorts due to my battles with the little known, and less understood, chronic illness, Crohn’s Disease. On Tuesday, the next day, September 11, 2001, the horrific tragedy of 9-11 took place and marketing my Book was no longer of interest to me.
The Birth of Virtual Patient Communities
A few years after 9-11, things on-line got back to normal and then the Hillary Clinton-Barack Obama Presidential Campaign put “Healthcare Reform” back in the national dialogue. My Book took on a second life and I started getting emails from Crohn’s Disease patients all over the world, either thanking me for helping them via my Book, or posing questions to me given my apparent knowledge and experience. The viability of a Crohn’s Disease Virtual Patient Community again seemed reasonable but, in all honesty, it didn’t seem realistic to happen on the URL, www.HospitalPatient.com. But I knew the necessary ingredients and a few years later, after I had started a few YouTube channels like The Medical Minute, I read an article on-line about some college or graduate school kid named Sean Ahrens who was starting “Crohnology.com” as a way to “connect” Crohn’s Disease” patients. I emailed Sean immediately and summarized the story above and suggested that we Skype ASAP. He agreed and after a fun Skype session, I just smiled because I knew I had met “the guy” who had accomplished what I wanted to do all along. Now, I wanted to help him make it succeed.
Crohnology.com – Credibility, Candor & Diversity
I got involved with Crohnology.com a few days after Sean Ahrens and I spoke with one another. Even at that early stage, I was able to envision what Crohnology.com was soon to become. Word quickly spread and within a few months, Crohnology.com became THE trusted global place for Crohn’s Disease patients to share knowledge, experiences and insights, all for the purpose of helping each other manage such a multi-level challenging disease. It was also a wonderful and validating feeling to converse with such diverse people who had the same health experiences as I did. After a while of posing questions and answering questions, Crohnology.com featured my Blog. I was honored to have my personal insights published within such a Crohn’s Disease “sanctum.” Clearly, credibility, candor and diversity are all present at Crohnology.com. This makes it a most useful “tool” for a Crohn’s Disease patient. I believe I have even been quoted as saying that every Crohn’s Disease “Medical Treatment Plan” should include regularly participating in Crohnology.com.
What’s the best thing about Crohn’s Disease? www.Crohnology.com.