Tag Archives: Humira

My IBD British Brethren in London

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 michaelweiss@hospitalpatient.com.

     “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 michaelweiss@hospitalpatient.com.

         I look forward to meeting my IBD British brethren.

If you will be in downtown London, June 7th to June 10th, 2015, and you'd like to participate in a Documentary to raise global awareness of the potential severity and pervasive nature of Crohn's Disease and Ulcerative Colitis, please contact me.  Thanks.

If you will be in downtown London, June 7th to June 10th, 2015, and you’d like to participate in a Documentary to raise global awareness of the potential severity and pervasive nature of Crohn’s Disease and Ulcerative Colitis, please contact me. Thanks.

Crohn’s Disease “Q & A”

Crohn's Disease Warrior Patrol

www.TheCDWP.org  “Patients helping other IBD patients is often the best medicine.”

Q & A re: Crohn's Disease, Ulcerative Colitis, Inflammatory Bowel Disease and Irritable Bowel Syndrome

Q & A re: Crohn’s Disease, Ulcerative Colitis, Inflammatory Bowel Disease and Irritable Bowel Syndrome

 

 

 

 

 

 

           During my various daily interactions in the different health care social media (hcsm) platforms, I try to answer at least a few Crohn’s Disease, Ulcerative Colitis or Inflammatory Bowel Disease (IBD) questions each and every day.  As a result, many people reach out to me privately, either through my Blog, CDWP Facebook, Google+, Twitter, LinkedIN or Tumblr accounts, and ask me questions more tailored to their situations.   I also recently participated in a Reddit “Ask Me Anything” session about Crohn’s Disease to try and interact with people who might not be active in the more traditional aforementioned hcsm platforms. I try to answer every question but due to the unpredictability of my own disease and the 24/7 responsibilities as the primary caretaker for my Mom, sometimes that is not possible.  Therefore, I thought it would be most helpful to the IBD community to start posting a few of the most interesting questions concerning the most generally applicable topics in an occasional “Crohn’s Disease Warrior Patrol” Mailbag, “Q & A.”  To that end, I have changed the names of the people who’ve asked these questions to protect their privacy.  If you have a question you’d like me to similarly address, please feel free to contact me at any of the above-referenced hcsm platforms.

CDWP Mailbag #1

Q: Hey. I’m 15. My friend was recently diagnosed with Crohn’s Disease after he had really bad stomach pains and hadn’t been eating much for weeks. What can I do to help him? —-Alexis Alva, New Orleans, LA

MAW/CDWP: That’s a very thoughtful question and I wish more friends were as considerate as you.  Educating yourself on Crohn’s Disease is probably the best 1st step but please keep in mind that even many gastroenterologists around the country don’t have the “same” working grasp on it.  Additionally, after you become familiar with the medical terminology, try to put yourself in your friend’s shoes and imagine the possible social, financial, familial, and relationship effects of an incurable, potentially severe disease which is also “invisible.”  By that, I mean your friend could be very sick but look FINE.  This doesn’t sound like much of a problem but I assure you it may turn out to be the most difficult problem caused by his Crohn’s as I have lost friends because of this and I suspect some strained family relationships are directly related to our respective different interpretations of the disabling effects Crohn’s Disease has on my life.

      For example, some people close to me who’ve witnessed the 20-25 surgeries, 200 hospitalizations and bizarre Crohn’s Disease medication side effects, some of which were worse than the Crohn’s, think I’m not disabled and should be doing more with my life despite the most credible IBD doctors in the world deeming me “permanently disabled” in extensive written documentation supported by voluminous Operative Reports, Pathology Reports, etc.  My friends seem to “walk in my shoes” and they understand my situation so perhaps there is more involved when it comes to siblings, relatives, parents, etc.  While it’s easy to logically contend with such a “misunderstanding,” it is a very disturbing feeling when people who love you either don’t believe you or they have other reasons for not “accepting” your medical impairment.  I bring this up so you are aware that your friend could silently be dealing with a similar situation and that’s very difficult to talk about for most people.  At least your friend was properly diagnosed because many Crohn’s Disease patients complain of the numerous “textbook” symptoms but some doctors refuse to believe them if their diagnostic tests are not 100% determinative of Crohn’s Disease.  Since most diagnoses of Crohn’s Disease are rarely “black and white,” these un-diagnosed Crohn’s patients can wait years for the proper diagnosis and during that time people close to them start to wonder if their friend or family member is really just a hypochondriac looking for attention.  I was in that position and it was horrific but thankfully my parents never wavered in their support of me.   Thankfully your friend doesn’t have that problem but if he did, I suspect YOU would be 100% supportive.

      Lastly, and I have learned this from MY FRIENDS:  Many times we make plans to hang out and at the last minute I must cancel due to some aspect of my Crohn’s Disease flaring up. When I was first diagnosed back in 1984 or thereabouts, my cancellations were perceived as a problem or as a slight by many of my friends/acquaintances (and it bothered me because I also didn’t understand the unpredictable nature of the disease).  Fortunately, over time, the people in my life have witnessed the sudden impact caused by the unpredictability of my Crohn’s Disease.  Therefore, if I do not show up as, or when, planned, they assume I am sick.  They call to make sure I am okay but they NEVER GET MAD.  One very close friend even told me that whenever they make plans with me, they know that I am a “game-time decision” because I might have to cancel at the last minute.  I love them for being so thoughtful and considerate.  THAT’S how you can help your friend.  :)

Q: I’m SO very frustrated….I have been having problems for several years now, always told it was IBS. I finally went to a gastroenterologist and he suspects some type of Colitis so I’m going for a colonoscopy next Tuesday to see what’s wrong. I am so SICK of this, I have gotten to where I just don’t eat all day long, and literally starving myself so I won’t have to go to the bathroom.  Today, I haven’t eaten a bite till I decided to nibble on a couple of Lay’s Potato Chips. Five minutes later, I find myself running to the bathroom. Is there any hope? Will I be able to enjoy food again? Will I ever get to stop worrying about leaving the house and being afraid that I will have to scramble to find a restroom in a hurry?? This is affecting my life horribly, is there hope??—-Jodi Payne, Reno, Nevada

MAW/CDWP: Jodi, the “diagnosis journey” to IBS or to IBD can be very frustrating and time-intensive. Sometimes it helps to see another doctor simply to get a new “perspective” because some physicians are uncomfortable with IBS or IBD cases which aren’t “black and white.” Personally, I find those gastroenterologists the hardest to deal with because IBDs like Crohn’s Disease and Ulcerative Colitis are usually identified based on an experienced doctor feeling comfortable and confident distinguishing between many factors within the traditional diagnostic results being in the “grey” area. Even if you think your doctor is up to that very difficult task, YOU might gain some different perspective from seeing another doctor and what you learn may help you “present” your symptoms to other doctors in a way in which they recognize that you have IBS or IBD.  I almost forgot to add that YES, THERE IS HOPE. You will get properly diagnosed and whether it is IBS or IBD, there are many medications to help control the difficult symptoms you describe, which, by the way, we all fear and tend to plan our lives around, until we find “that” medication which works best for US. Hang in there and try to keep a diary of what you eat and how you feel afterwards. By doing so, you might stumble upon a pattern and that would be very helpful to your doctor.

Q: 5 1/2 weeks in the hospital so far! Came in on the 31st of March and had complications on the 9th. Several surgeries later here I am! I was at the brink of death! God brought me back! I’ve had Crohn’s since 1990!—-Becky Rosenberg, Sunrise, Florida

MAW/CDWP: Becky, you are quite the Warrior. I’ve had Crohn’s since 1984 and the look in your face says it all [she had posted a picture with the above comment being the caption). 5 1/2 weeks in a hospital is literally like “doing time” with all due respect to actual “prisoners.” I hope you are done with the surgeries and making your way up the food chain from jello to bad, but solid hospital food. Hang in there. Also, whenever I have been in situations like yours, I developed a “survival mindset” in which I only worried about getting through each day and I abandoned any “results-oriented” thinking. That’s why I refer to it as “doing time” because it really is that difficult – as you well know. I learned to do that after SO MANY hospitalizations in my early 20s where the “highs” and “lows” eventually devastated me. With Crohn’s, as you also well know, you can be signing your Hospital Discharge Papers and then suffer an intestinal obstruction and be rushed into emergency surgery!!! You seem like you have a much better attitude than I did, so try and relax and just get through it and when you come out you will laugh at how a particular nurse woke you up every night at 2 AM to take a sleeping pill.  Unfortunately, we can’t control the Crohn’s but we sure can laugh about the bizarre situations it often places us in.

Q: What IS Crohn’s Disease?—-Lisa Keifer, Oklahoma City, OK

MAW/CDWP:  Before I tackle the “meaning of life,” I will attempt to answer your question succinctly as possible.  Crohn’s Disease is an Inflammatory Bowel Disease (IBD) which is a chronic, incurable, autoimmune disease, and it primarily affects the gastrointestinal system. Essentially, people born with a genetic predisposition to Crohn’s Disease wind up getting it when that proclivity is “triggered” by some environmental factor or destabilizing infection in the intestine.  More specifically, sensors in the gut and the brain detect some type of bacteria in the intestine which should not be there, so the body sends certain proteins to thwart the development of that unwanted bacteria but people with Crohn’s don’t have the capacity to stop “defending against the unwanted bacteria” and the repetitious pounding against this intestinal bacteria “intruder” causes painful inflammation in the gut. This inflammation then makes the diameter of the intestine smaller, as the inflamed intestine becomes swollen. Accordingly, people with Crohn’s Disease don’t have weak immune systems; they have overactive immune systems.

     When the intestine occludes to the point of “obstructing” the intestinal passageway, then the patient has an incredibly painful “intestinal obstruction” because the body’s natural process of “peristalsis” (i.e., the involuntary constriction and relaxation of the muscles of the intestine which creates wave- or cramp-like movements that push the contents of the intestine forward) keeps functioning as if the “garden hose” of an intestine is not “kinked,” when, in fact, it is.  The pain increases as peristalsis keeps trying to push through the intestinal blockage. This warrants emergent medical care to avoid the intestine from perforating such that its contents would be emptied into the body where they would be treated as toxins by different human organs and systems.  A person can die when that happens.

      Some Crohn’s patients respond to the intestinal inflammation a bit differently in that it creates frequent and painful excretion of waste and/or development of a fistula (i.e., the unnatural connection of two body cavities, such as the rectum connecting to the vagina, or the connection of a body cavity to the skin, such as the rectum to the skin) and/or an abscess (i.e., a confined pocket of pus that collects in tissues, organs, or spaces inside the body).  These are just the gastrointestinal (GI) effects and since Crohn’s Disease is an autoimmune disease it can cause “peripheral manifestations” such that there can be inflammation anywhere in the body from the eye to the mouth to the anus.

        The most common peripheral or “extra-intestinal” manifestations involve the musculoskeletal system (such as arthritis in various joints even necessitating joint replacements such as my recent left hip replacement surgery at the age of 50 years old, or the development of “Sacroiliitis” from very painful inflammation of the sacroiliac joint), dermatologic systems (a broad spectrum of skin diseases and rashes, with “Psoriasis” being possible) as well as various serious conditions involving the ocular, renal and pulmonary systems.  Other serious manifestations involve the development of Primary Sclerosing Cholangitis (PSC), a liver disease which involves severe inflammation and scarring that develops in the bile ducts. (Although, PSC seems to occur more frequently in people with Ulcerative Colitis than in those with Crohn’s Disease.)  The peripheral manifestations in the ocular, renal and pulmonary systems include, but are not limited to, cataracts, kidney stones, gall stones, prostatitis, bronchitis and much more serious diseases within these systemic specialties.

         As mentioned above, doctors tend to define Crohn’s Disease mostly in terms of its effects as a gastrointestinal disease.  But from a patient’s perspective, at least mine, I believe such a myopic definition is a gross underestimation of the disease’s potential severity.  More specifically, based on my experience, Crohn’s Disease is more like the body’s inability to efficiently or effectively stop, or even make a dent in, the painful inflammation resulting from an overactive immune system which responds abnormally to simple injuries like hip flexors, seasonal allergies or severe dry eye.  Then these seemingly run-of-the-mill conditions become more complex and require much more time and care to heal.  From a practical perspective, when physicians fail to more readily acknowledge my body’s inability to control its response to inflammation, it’s as if they are treating a different person because I typically need stronger antibiotics, I need to be on them for a longer period of time and my pain is usually more pronounced than that of other people suffering with the same injury and my injury tends to last longer.  A good example of this is demonstrated by my February, 2014, Left Hip Replacement surgery.  It is over one (1) year later and I’m still in physical therapy trying to put an end to the various post-operative inflammatory-based problems.  Most people are walking without a cane and back at work within a few months.  My body can’t “process” the shock of the inflammation and it also results in  chronic pain.

        The effects of Crohn’s Disease can get further compounded by the possibility (or probability) of lifestyle-altering or life-changing side effects from the most efficacious medications such as steroids (i.e., “Prednisone” to reduce the inflammation, which may weaken the bones), immunosuppressant drugs (i.e., “6 MP” to slow the overactive immune response, which might induce the painful condition of “pancreatitis”) and immunomodulator drugs (i.e., biologic drugs like “Humira,” which fine-tune or modulate the exact protein used in trying to thwart that unwanted bacterial intruder but which can initiate a laundry list of life-threatening or substantially life-altering diseases).

        Lastly, please also note that Crohn’s Disease is a “broad spectrum disease” such that I have Severe Crohn’s Disease for thirty (30) years (200 hospitalizations, 25 surgeries, etc.) whereas my older sister has thus far had a much milder case which has warranted zero surgeries and no hospitalizations.

Please submit your questions for the next CDWP Mailbag "Q & A" or feel free to comment on this Post.  Thanks.

Please submit your questions for the next CDWP Mailbag “Q & A” or feel free to comment on this Post. Thanks.

Better Medicine thru Better Medical Histories

“When you live with a life-altering health condition – like an autoimmune disease, chronic illness or developmental disorder – there are bad days and good days without hows or whys. Maybe there’s a pattern to what hurts and what helps, but you haven’t found it.   Yet.

Betterpath is a free service that combines what’s happened in your medical history with what’s happening in your life, so you can find connections between what you do and how you feel.”

BETTERPATH.COM

APRIL 17, 2015

“OUR PAST AND PRESENT [PATIENT] DATA IS A FOUNDATION FOR BETTER [MEDICAL] CARE IN THE FUTURE.” 

BETTERPATH.COM

          The information required by the phrase, “medical history,” is inherent to the various “forms” which must be completed in order to be treated by healthcare professionals in medical practices and hospitals. Yet, even chronic patients typically have very little meaningful recall of the logistical and medical specifics pertaining to fairly recent, but significant, medical or surgical events which occurred in their lives.  Common rhetorical questions uttered by these patients when trying to reconstruct their medical histories include:  “What was the name of that growth taken out of my colon a couple of years ago?”  “Where’d I put the pathology report?” “What was the doctor’s name?” “I remember they put me on a very strong antibiotic after the procedure and I had a bizarre reaction to it, what was the name of that drug?” “When was my last colonoscopy?”

           Additionally, when annual or new physician “forms” require disease-specific information regarding medical histories of our siblings, parents, grandparents, aunts, uncles, etc., we find ourselves in physician waiting rooms actually saying out loud to our wives, husbands, mothers, or to whomever else accompanied us to the physician’s office: “Honey, does anyone on your side of the family have heart, lung, gastrointestinal or psychological problems?” But then we realize our trusted companions are not exactly using scientific techniques to “access” this information so, we guess; and we try to remember if our long-deceased, and sorely missed, heavy-set uncle talked more about his heart or his lung problems, when he regularly took us kids to Yankee games and made us swear we wouldn’t tell our aunts how many jumbo hot dogs he ate at the ballgame.  Equally worrisome is how “accepting” many medical facilities have become of such inexact determinations of family medical histories when science has proven how valuable this information can be as predictive evidence of serious, and even life-threatening, medical conditions which can possibly be prevented or mitigated with the appropriate medical surveillance methods, diets and exercises.

           At one time or another, especially if we have chronic, autoimmune illnesses like Crohn’s Disease, which cause hospitalizations, surgeries, and require interactions with numerous non-gastrointestinal medical specialists to treat its peripheral manifestations, we all ask ourselves questions like these and wind up being content with “trusting the healthcare system,” especially since the recent federal mandate of Electronic Medical Records (EMRs) and propagation of “digital” record-keeping, but hospitals and medical practices are not designed to keep chronological and comprehensive files of our respective medical histories. It is simply too much to ask of an industry replete with inefficient and bureaucratic business systems. Moreover, at some point, accountability for one’s health becomes a personal responsibility and that begins with maintaining one’s own medical history and becoming “the expert in you.”

“BE THE EXPERT IN YOU”

BETTERPATH.COM

          Becoming the medical “expert in you” seems to be an easy chore for a normal healperson but it can be overwhelming for chronic patients like me because thirty (30) years of Severe Crohn’s Disease has resulted in approximately two-hundred (200) hospitalizations, twenty-five (25) major surgeries and running the gamut through all Crohn’s Disease medications, from the comparatively benign “Azulfidine,” to the potent capabilities of “biologics” such as “Remicade,” “Humira” and “Cimzia.”  If I’m not busy dealing with the disabling gastrointestinal effects of Crohn’s Disease, I might also have to contend with the consequences of its peripheral manifestations such as two (2) cataract surgeries, chronic dental complications, annual bouts with “sacroiliitis,” iron deficiencies, pain management and many other painful and systemic “inflammatory-based” medical woes.

            As I’ve gotten older, I’ve also learned the “price to pay” for years of treating Crohn’s Disease “symptoms” with steroids and the aforementioned biologics (as opposed to focusing treatments on its “cause,” which has not yet been specifically defined) and for me that has included very serious medical problems ranging from a Left Hip Replacement (with a Right Hip Replacement likely necessary way too soon) to an inflammation-based lung condition which caused such severe shortness of breath that only T-cell-based chemotherapy was successful in restoring my ability to breathe normally, and, in one (1) extreme flare-up, save my life.  This lung condition has become chronic, but thus far manageable, and surgical lung biopsies have revealed necrotic tissue; samples of which have never been seen before by the top pathologists in the United States.

         Mine is likely more of an extreme case but I’ve also been somewhat lucky in that I have not been affected by the more typical day-to-day, prolonged but less talked about complications of Severe Crohn’s Disease (and side effects to its medications) such as fistulas, abscesses and pancreatitis, each of which can cause even more frequent and more frustrating hospitalizations than I have experienced. Still, becoming “the medical expert in me” was never easy as it first felt like an extension of the disease so I tried to ignore it in my defiant youth and then when I matured and “accepted” my fate and tried to better understand my particular “brand” of Crohn’s Disease, it was overwhelming especially when some of my experiences were unprecedented, at least prior to the proliferation of health care social media, when strange reactions to IBD medications or bizarre Crohn’s Disease manifestations and compilations became topics bandied about in various Tweetchats.

    More serious from a medical records perspective, however, are the informational gaps typically present in the patient histories caused by chronic diseases like Crohn’s Disease which greatly affect young adults who are normally not yet established in a particular community due to their understandable aspirations to go to the most appropriate graduate school, no matter where it is located, and/or to pursue professional career opportunities for which they are trained, also often requiring relocation to a different state, wherever, and whenever such opportunities exist.  Keeping track of all the different doctors, hospitals and medical tests along the way becomes secondary to enjoying the healthy times and such a painstaking record-keeping routine can also be psychologically stinging and the result is incomplete patient histories for a subset of patients who arguably need them the most.

         That’s exactly what happened to me as the aforementioned hospitalizations, surgeries and medical mishaps have occurred while I was living in New York, New Jersey, Boston, MA, Austin, TX and Los Angeles, CA. As is also the case with most other Inflammatory Bowel Disease (IBD) patients, the unpredictability of Crohn’s Disease and the medical mayhem it has wreaked in my life also interrupted business trips and planned vacations necessitating the creation of some type of hospital, clinic or medical practice “patient record” in places such as Portland, OR, Dothan, AL, Amarillo, TX, South Lake Tahoe, NV, Reno, NV and in many other places, both foreign and domestic.   

“BETTER CARE STARTS WITH BETTER INFORMATION. THAT’S WHY IT’S IMPORTANT TO HAVE YOUR HEALTH RECORDS ON HAND.”

BETTERPATH.COM

      Please understand I’m sharing an overview of my medical history to demonstrate the voluminous amount of documentation required to become “the medical expert in you.”  As I’ve always believed the aggregation of individual patient data represents the “missing link” medical researchers need to finally develop safer and more efficacious treatments which attack the CAUSE of Crohn’s Disease and Ulcerative Colitis and not its SYMPTOMS, I began more seriously “becoming the medical expert in me” in 2005 just prior to relocating to Los Angeles, California, for a new job.  This “major life event” triggered a brief but profound reflective period in my life and it began to bother me that pieces of my small bowel could be anatomy prank fodder for some wise-ass (e.g., my much smarter doppelganger) in a medical school somewhere or just lying in the freezer in any one of many different hospitals around the country.   I also didn’t have the Operative or Pathology Reports of my numerous Crohn’s Disease surgeries, which at that point in time had left me with approximately six (6) feet of my small bowel (by way of reference, a healthy adult has approximately twenty-one [21] feet of small bowel) so I wasn’t exactly “playing with the house’s money” and that made me feel irresponsible and excessively exposed.

     The great singer, songwriter, performer and writer, Jimmy Buffet once wrote:  **Scars are just permanent reminders of temporary feelings.”  This is relevant here because by moving to California at that time in my life to pursue a professional endeavor, I had created a situation in which I had possibly made myself much more medically vulnerable than was necessary.  More specifically, the only way I could reliably stave off additional intestinal surgery in an emergency situation to an “LA surgeon” (assuming it was not Mr. Jimmy Buffet) who knew nothing about ME, other than his or her stark first impression after seeing my zipper-like abdominal scar and surmising I likely had an aggressive case of “obstructional” Crohn’s Disease which was now about to be bi-coastal, I had to demonstrate “the medical expert in me” and quickly communicate Mr. Buffet’s sage observation to buy myself a few days of conservative treatment. Displaying that empowered patient “persona” would only be effective if I traveled with some type of “official-looking” chronological listing of all my surgeries or I possessed a detailed note from my lifelong gastroenterologist which conveyed the nuances of my disease.

        Despite my pronounced scar, such precise paperwork would give me that rare second chance at a first impression with the LA surgeon. In fact, I was an engaged patient and “on top” of my disease (sort of, as you will read below) because knowledge really is power when dealing with an illness as mercurial as Crohn’s Disease.  Mr. Buffet’s line only goes so far in spite of its dead-on portrayal of a patient with a pretty damn positive attitude.  Accordingly, I had performed some research on the Internet prior to making the cross-country sojourn to my new apartment in Santa Monica, California and then mailed out signed Authorizations to several hospitals and medical practices in at least seven (7) different states and crossed my fingers hoping the names of hospitals hadn’t changed and any applicable medical records retention laws were properly followed and /or certain facilities planned on keeping all medical records forever.

“HAVING COPIES OF YOUR MEDICAL RECORDS IS GOOD. UNDERSTANDING WHAT’S IN THEM IS BETTER.”

BETTERPATH.COM

       A few weeks later, just prior to “leaving town” [ok, it was New Jersey, but you’d never see that reference in an Eagles’ song], I began to accumulate huge stacks of medical records which needed to be scanned into my computer; my plan all along.  That’s when I “hit the wall” and “punted” because I simply did not have the time to carefully and methodically carry out my plan.  But before the ball was snapped, I made sure I devised organized piles of the medical records and securely stored them in an easily accessible place (i.e., my basement) in case I needed them in the future. I did, however, familiarize myself with the present state of my gastrointestinal system after so many surgeries so that I could converse intelligently about it with my new gastroenterologist in California. Although I do still try to obtain all of my medical, surgical, laboratory and pathology reports and then scan them into my computer (this includes simple blood tests, the precise pharmaceutical makeup of my chemotherapy, radiology reports, etc.), I have no idea what they all mean but at least I feel as if I can readily participate in helping medical researchers find safer and more efficacious Crohn’s Disease treatments, when I am summoned to do so.

“BUILDING A BETTER HEALTH STORY.”

BETTERPATH.COM

          When I returned to New Jersey in 2010 [Don Henley I was not, but “Mighty” Max Weinberg, perhaps, as I was very friendly with his wonderful mom, Ruth, and somehow  it seemed more realistic], I knew much had changed in the past 5-7 years regarding incremental advancements in healthcare technology and in the development of precise healthcare data analytics, but I was still waiting for the smart entrepreneurs and technologists to focus their formidable talents on the enormous amount of opportunities which lie in fixing the grossly inefficient healthcare industry, including what I like to refer to as “the crowdsourcing of patient data” for the purposes of developing safer and more effective treatments, or even cures, to diseases which were once thought to pose forever unanswerable questions. But I think I only truly realized the new “digital” healthcare possibilities after receiving the honor of recently being appointed by the US Department of Defense (DOD) to be a “Consumer Reviewer” in the Congressionally Directed Medical Research Program (CDMRP), Peer Reviewed Medical Research Program (PRMRP).  As a consumer reviewer, I was a full voting member, along with prominent scientists, at rather intensely focused meetings in Washington, D.C. to help determine how the $200M for Fiscal Year 2014 (FY14) will be spent for the Peer Reviewed Medical Research Program and its twenty-five (25) topic (i.e., disease) areas of research.

         The knowledge I gained about the overall United States medical research process was invaluable and that was just from listening to the country’s brightest scientists “talk shop” during our lunch and dinner sessions. Just like these scientists were fascinated by the few participating patient “consumer reviewers” who added “seasoning” to the festivities with their “tales of reality” about living with a particular disease compared to the otherwise bland boring research proposals, I could tell how much more prolific these scientists could be if the patient data they routinely reviewed instead told a “story” of that patient’s daily heroic battle with an often disabling disease.  Logically, it seemed as if these scientists were “close” to discovering more efficient, effective and precise treatments for each of the twenty-five (25) diseases such that all they needed to break the next barrier was large numbers of some type of standardized patient histories from which to analyze commonalities and other comparative algorithmic results.  But scientifically, the frustration of the elusiveness of this type of consistent patient history was palpable in my conference room. These men and women were DRIVEN and “obstacles” were looked upon more as “challenges.”  I left Washington, D.C. absolutely inspired about the medical breakthroughs sure to result from many of the brilliant, dedicated scientists I was privileged to meet as a DOD CDMRP PRMRP consumer reviewer.

“BETTER TREATMENT STARTS WITH BETTER DATA.”

BETTERPATH.COM

          Then, a few months later, I received an unsolicited email through LinkedIn from Alexandra Sinderbrand, the Engagement Ambassador from a company called “Betterpath.”  Alexandra had reached out to me based on my active presence in the various Crohn’s Disease and Ulcerative Colitis health care social media platforms.  She also knew I founded and operated a patient-support charity called the “Crohn’s Disease Warrior Patrol” [the “CDWP“] which was predicated on the simple premise: Patients helping other IBD patients, can be the best medicine.”  Her email indicated she had Crohn’s Disease and her experiences with the disease made a huge impact upon her dad, Gary Sinderbrand, such that he started Betterpath to generate better data that actually improves treatment outcomes and to empower people with their own information so they can manage their own care.  I thought those were incredibly sound and forward-thinking reasons to start a company and if proven possible, I wanted to learn more.

         I am also of the belief that the conventional treatments for Crohn’s Disease and Ulcerative Colitis are relatively archaic and seemingly frozen in methods and technologies from the past as many IBD doctors still seem to play “not to lose” when I think it is fair to say that many current patients wish they were more positive and “played to win.” I recognized that optimistic approach in Alexandra’s description of Betterpath.  I had become familiar with it when I met the highly motivated scientists in Washington, D.C., as each scientist ultimately demonstrated an understanding of the impending possible achievements of the application of technology to medicine.  Betterpath seemed predicated on that same logical and inevitable “positivity” of mixing technology with medicine and it was much welcomed news.  She also emphasized how Betterpath focused on better treatments through better data which started with understandable patient histories which told the patient’s “story” instead of merely listing his or her vital statistics.  Given the seemingly individualized manner in which IBD affects different patients, I couldn’t agree more with everything she wrote and our email exchange soon turned into a long phone call.

“WE FIND THE FACTS THAT MATTER, AND SUMMARIZE WHAT’S HAPPENED.”

BETTERPATH.COM

          As they say, she had me at “Hello” because what she was saying helped me understand the value of the stacks of medical records “securely” piled up in my basement.  Through Betterpath, it is now possible for me to “own” those “stacks” of medical records and to quickly and comprehensively understand my medical history and for my doctor to easily understand the Crohn’s Disease “story” actually told by those stacks of records.  Betterpath makes medical histories “come to life” by way of a “better [digital] health story” which any doctor could easily understand.  It seemed so fresh of a take on the value and precision-potential of patient data, I think even Jimmy Buffet would approve.   I became further convinced of this after watching the three (3)-minute video below from Betterpath, featuring Alexandra Sinderbrand explaining how Betterpath obtains, secures and analyzes patient medical histories.  In the video, Alexandra uses her own medical history to illustrate the capabilities of Betterpath, some of which are still in beta phase.

 

 THE PATIENT PERSPECTIVE:

BETTERPATH “PATIENT SUMMARIES”

SIGN UP AT NOW AT BETTERPATH.COM

         When I explained the innovative service which Betterpath currently provides to Inflammatory Bowel Disease (IBD) and Irritable Bowel Syndrome (IBS) patients to my longtime New York City gastroenterologist, Dr. Mark L. Chapman, who is 1 of only 3 or 4 gastroenterologists still practicing who were trained by Dr. Burrill Bernard Crohn (the first doctor to identify Crohn’s Disease in 1932), he said something to the effect of: “Michael, if they can organize your 30 years of medical records into a comprehensive and easily understood digital file by which an experienced gastroenterologist reviewing that file could quickly be brought up-to-speed on YOUR case, THAT would be very impressive.”  THAT, seems to be exactly what they are doing. I have been so impressed with the process and “product” thus far that I am recommending it to all of the Crohn’s Disease and Ulcerative Colitis patients who’ve been members of the “Crohn’s Disease Warrior Patrol.” The CDWP is also working with Betterpath to create a “Summer Meetup” in New York City on a date, and at a venue, soon to be announced so that IBD and IBS patients in this area of the United States could ask questions of the Betterpath Team and review MY Patient Summary, even if only for entertainment purposes. :)

       Whether you are a member of the CDWP, you have Irritable Bowel Syndrome (IBS) or you have any type of IBD such as Crohn’s Disease, Ulcerative Colitis or Indeterminate Colitis, I STRONGLY ENCOURAGE YOU TO visit Betterpath.com and sign up to receive your digital Medical History and “Patient Summary.” If you have ANY questions about Betterpath, please contact its “Engagement Ambassador,” Alexandra Sinderbrand. [It is my understanding Betterpath plans to gradually expand its services to OTHER PATIENT SUBSETS but at this early-phase Betterpath is mastering the application of its proprietary technology to IBD and IBS patient histories since it first began analyzing IBD and IBS patient histories because of the aforementioned personal family connection to them.]

IMPORTANT TAKEAWAYS:

  • Betterpath collects your medical records – paper and electronic  – before building your “Patient Summary” – FOR FREE;
  • They “summarize” your medical history with Betterpath proprietary algorithms which convert your patient data into meaningful information conveyed via Betterpath’s “Patient Summaries” which more vividly describe your disease, all the while linking back to sources in your original medical records;
  • They are able to provide this service for FREE to you and your doctor by selling access to de-identified (anonymous) data generated by the medical histories of all the patients who sign up at Betterpath;
  • Betterpath uses state-of-the-art cryptography techniques to protect all patient data such as two (2)-factor authentication and encryption;
  • Betterpath meets or exceeds all applicable standards regarding medical information privacy, as it is classified as a “healthcare clearinghouse” under “The Health Insurance Portability and Accountability Act of 1996” (HIPAA), which establishes national standards for electronic health care transactions and medical information privacy; and
  • If you sign up and later decide to leave Betterpath, you can permanently delete your personal information from their system, at any time, for any reason.  You can also download your medical records and “Patient Summary” before your delete your account.

**A Pirate Looks at Fifty,” by Jimmy Buffett.  [GREAT BOOK]

 

Please share your thoughts and comments about Betterpath and its innovative objective to collect, securely store and analyze your medical records for the betterment of patient care.

Please share your thoughts and comments about Betterpath and its innovative objective to collect, securely store and analyze your medical records for the betterment of patient care.

Crohn’s Disease – The Virtual Crowd holds the Cure

People are dying from Crohn’s Disease yet many people in the world have no idea about its potential SEVERITY or PERVASIVE nature. At present, Doctors only treat its SYMPTOMS because Medical Researchers have been unable to pin down the exact configuration of bacterial, genetics and environmental factors which CAUSE it. Worse, these steroid, immuno-suppressant and immuno-modulator (i.e., “Biologics,” like television’s celebrity pharmaceutical, “Humira”) symptom drug treatments can cause counter-intuitive lethal and life-style altering side effects FAR WORSE than the Crohn’s Disease. But Crohn’s Disease symptoms can be THAT physically, emotionally, psychologically, financially, professionally and socially destructive and painful, its patients have no choice but to conform to these traditional treatments, many of which haven’t changed in the 30 years I’ve had the disease. But that’s changing now thanks to BRAVE PATIENTS who connect on the Internet to share experiences to help one another.

Incremental Improvements in Patient-Centric Technology + Healthcare Social Media Analytics + Data-Mining from Inflammatory Bowel Disease (IBD) Wearables =

A Crowdsourced Cure to Crohn’s Disease

Patients are the most valuable untapped resource in Healthcare

      Ever since my friend Glen visited me in the hospital approximately 12 years ago and began raving about this little device in his hand which contained all of his Grateful Dead and Bruce Springsteen genuine and bootlegged music, my life changed.  I soon learned first-hand by just how much, when I moved apartments a few years later and was able to discard almost 1,000 CDs because they now were all housed in my 160 GB iPod, with room to spare.  The practical effects of that little iPod, on just my day-to-day mundane tasks, fostered hope deep down inside me that one day soon some smart scientists and entrepreneurs would turn their formidable smarts to healthcare, if only to capitalize on the opportunities presented by a grossly inefficient healthcare system which more accurately resembled “my father’s Oldsmobile” instead of “THE” industry poised to be technologically transformed into representing the “New Digital  Frontier” which would enable healthcare professionals to more precisely and efficiently diagnose and treat the most challenging diseases.

      My ability to compact my entire album and CD collection into a device which fit into my back pocket had changed my thinking as to what was formerly the technological limit and I embraced the new digital limitless frontier and its infinite possibilities which now permeated all walks of my life.  Shortly thereafter, the proliferation of “health care social media” and its various digital platforms created a technologically-driven Patient Grassroots Movement which brought the phrase “patient-centric” into our lexicon and began to demonstrate how patients might be the most valuable untapped resource in healthcare, and possibly even the missing link to finally conquering heretofore unthinkable solutions to devastating medical problems.

Patients helping other Patients is Powerful Medicine

   Then, just like “Deadheads” swapping digital files to complete their meticulously organized libraries of Grateful Dead concerts, patients with all different diseases began to find each other in disease-specific virtual patient communities and in confidential virtual patient “Groups” and they started to share contemporaneous medical feelings and experiences.  For those patients who shared seemingly candid information, the reward was their receipt of almost instantaneous global validation of their strangest disease symptoms and manifestations, the ones they thought were weird, bizarre or just simply in their heads, as some frustrated doctors and “negative” family members had repeatedly told them.  I watched, and participated, as this “digital global connection” between patients almost immediately improved the quality of life, especially for chronic patients battling rare diseases and incurable diseases like mine, Crohn’s Disease, a common Inflammatory Bowel Disease (IBD).  Moreover, the lonely plight of the chronic patient could now be remedied in an instant by posting on Facebook, Twitter or Google+ and initiating a “conversation” with a like-minded patient, possibly in a different time zone, in some faraway place, maybe even on the other side of the world.   That’s when I confirmed what I had heard so many years ago in one of my favorite Grateful Dead songs, “Scarlet Begonias”: “Once in a while you get shown the light, in the strangest of places, if you look at it right.” [Hunter/Garcia]

It all “clicked” in 2014 at “Doctors 2.0 & You” in Paris, France

      My regular participation in healthcare social media combined with my diverse digital global connections with other Crohn’s Disease patients (and also with an increasing number of healthcare professionals and medical school students, both of whom are so dedicated to their respective medical specialties that they can’t resist participating in generalized patient-centric Tweetchats) has taught me so much about how to best MANAGE a difficult disease like Crohn’s Disease.  But the emergence of patient-centric smartphone medicine, mobile health, e-patients, quantified-self health-tracking devices and the upcoming wearables-for-healthcare revolution has me now thinking about better utilizing all of the volunteered information from these patients to better UNDERSTAND Crohn’s Disease.  This change in how I want to utilize the ever-increasing incremental capabilities of patient-centric healthcare technology first occurred to me in June, 2014, while interacting with the trail-blazing healthcare social media analytics company, “Symplur,” at “Doctors 2.0 & You,” “‘The’ International Digital Health Conference in Social Media, Mobile Apps, Serious Games & Connected Objects, held annually in early June in Paris, France.

      More specifically, I began to see the value of the voluminous Twitter patient data fastidiously organized and analyzed by Symplur as it developed algorithms and other proprietary computations to segregate this data for empowered, informed and assertive patients to exhibit “[e]mpowering decision-making with real-time access to insights from over a billion healthcare social media data points.”  In more practical terms, Symplur provided patients with the ability to crowdsource the various decisions they had to make in managing their disease or medical condition.  As a result, patients could now enter doctor exam rooms and surgical consultations conceivably already “armed” with at least the knowledge and experience gained from the hundreds of thousands of patients who’ve interacted on Twitter about a specific disease, condition, symptom or medical issue. This offers patients and healthcare professionals an additional medically-significant dimension of information which maximizes their respective capabilities during a time of increasingly innovative and fast-changing healthcare technology.

Medical Wearables “revolution” will add more specific REAL patient information

      “Crowdsourcing” is defined by the online Merriam-Webster Dictionary as “the practice of obtaining needed services, ideas, or content by soliciting contributions from a large group of people and especially from the online community rather than from traditional employees or suppliers.”  Now, with the advent of medical wearables, patients with any disease which lends itself reasonably well to accurate predictive or identifiable “measurables” will be able to crowdsource their readiness to discuss all aspects of their disease with healthcare professionals from not only the information and experience gleaned from social media but also from REAL patients, assuming these patients consent to this usage of their “measurables” or medical data obtained from their medical wearables.  In that regard, with an incurable, chronic disease like Crohn’s Disease, it would appear many, if not, most, patients would gladly participate in sharing the relevant medical information obtained from their IBD-wearables to help find safer and more efficacious treatments for Crohn’s Disease, and possibly even a cure.

     Therefore, with the proliferation of medical wearables, the continued incremental advances in patient-centric healthcare technology plus the myriad of data points from all patient social media activity (an extension of the fascinating new modifications to the “Healthcare Hashtag Project” as “presented” by the representatives of “Symplur” at 2014’s “Doctors 2.0 & You”),  crowdsourcing will soon enable a patient with the ability to, for example, access Crohn’s Disease medication decisions made by other patients around-the-world with similar IBD cases via access to IBD-wearable data-banks such that they can go into the exam room and bring with them the wisdom and experience of potentially at least tens of thousands of other similar Crohn’s Disease patients.  Then, the always difficult Crohn’s Disease medication decisions involving steroids, immuno-suppressants and immuno-modulators (i.e., Biologics) are at least partially based upon REAL data from other similar Crohn’s or IBD patients who’ve already tried different combinations of these drugs to treat their Crohn’s Disease.  This will completely change the way in which Crohn’s Disease patients make the necessary but difficult “having-to-choose-between-the-lesser-of 2-evils” decisions inherent with these potent but potentially deleterious side-effects-laden IBD treatment drugs.  In essence, the Crohn’s Disease patient, and patients with other heretofore thought-to-be incurable diseases, can now “crowdsource” these type of decisions and at least attempt to mitigate treatment medication risks while simultaneously devising the most efficacious treatment FOR THEM.

Wearables also will grant Doctors and Medical Researchers a contemporaneous perspective in treating chronic diseases like Crohn’s Disease

      The information gathered from healthcare social media has become so ripe with potentially “difference-making” data points that MANY very knowledgeable and experienced patients with Crohn’s Disease and Ulcerative Colitis (the other most common IBD) are increasingly willing to share the details of their every encounter with these diseases for the purposes of helping the dedicated medical researchers and healthcare professionals refine current IBD “symptom treatments” (as causation is still uncertain so all treatments are targeted at minimizing symptoms) so they are safer and more efficacious while they buy time until the bacterial, genetics and environmental triggers for Crohn’s Disease and Ulcerative Colitis are better understood and a cure can be contemplated.  During this same time, the global usage, and hopefully popularity, of IBD-wearables will enable healthcare professionals to also gain an additional element of IBD patient information which they’ve never had access to before regarding what happens to patients when doctors aren’t around. More practically, people with chronic diseases make appointments to see their doctors for future projected dates and times but in an ideal world they’d be better served by seeing their doctors when they, for example, encounter noteworthy Crohn’s Disease problems like a partial intestinal obstruction, on a day when winter suddenly changes to spring and the temperature and barometric pressure both drop precipitously, leaving them to wonder, and hopefully contemporaneously record, if there is a connection between these two extreme disease and weather occurrences?

      IBD-wearables which can measure sharp increases in blood pressure due to the sudden onset of severe pain (and other patient vital/systemic symptoms which correlate to noteworthy IBD or Crohn’s Disease manifestations) will most assuredly capture all of the relevant changes in patient measurables during this partial intestinal obstruction.  This ensures that the occurrence of this relevant IBD medical symptom (i.e., a partial intestinal obstruction) is denoted in the patient’s medical record at the proper time and with the correct amount of scientific evidentiary impact.  More importantly, this IBD “event” is no longer a potentially unreliable anecdotal story told by the patient to an experienced Crohn’s Disease doctor weeks after it occurred, when the patient shows up for his or her next scheduled appointment.  This experienced IBD doctor has likely heard stories like this many times before (as MANY IBD patients report a connection between severe IBD flare-ups and “the change of seasons”) but the doctor has never witnessed them, that is, until now, via the patient’s IBD-wearable.

      After a significant period of time observing the data results of IBD wearables, analytical break-downs of IBD patient social media activity and continued incremental improvements in overall patient-centric healthcare technology, medical researchers focused on identifying the specific causation triggers of Crohn’s Disease, or of Crohn’s Disease flare-ups, should be closer to spotting “patterns” or identifying “factors” which, for example, tie together sudden or significant changes in the weather with intestinal obstructions and blockages in Crohn’s Disease patients. Over time, the crowdsourcing of these increasingly more precise data points in Crohn’s Disease patients should provide medical researchers with the most realistic opportunity they’ve ever had to interpret meaningful personalized data from numerous IBD patients for the purposes of  understanding the causation of Crohn’s Disease.

Crowdsourcing is now routinely used by the world’s most successful businesses

My lofty aspirations for a Crohn’s Disease cure might seem unrealistic to many long-suffering IBD patients who are reading this but please consider the following:

Automobile “Cruise Control” was invented in and around 1950 and in just a few months, in 2015, Tesla will be manufacturing fully autonomous vehicles which can DRIVE THEMSELVES by electronically  “crowdsourcing” the requisite LIVE course-plotting information necessary to safely navigate road conditions, traffic, speed limits, etc., using sensors, satellites and data from the Internet that will access and interpret traffic lights and road signs, including last-minute detours; and the Amazon Prime Instant streaming service, the digital original content streaming “Network” of Amazon.com, recently crowdsourced Amazon customers for their input on its possible Network series, “Bosch,” as it wished to test the Pilot episode of this American “police procedural television series” based around a fictional Los Angeles Police Detective, Harry Bosch, a recurring character in several commercially successful novels written by acclaimed author, Michael Connelly.

Amazon was willing to produce a Pilot episode but it did not want to commit more production dollar amounts to a possible episodic series if its customers would not watch it. Given the interwoven relationship Amazon has with its customers, it had hundreds of thousands of data points so all it took was engagement of an analytical tool which tabulated customer votes as to whether or not Amazon Prime Instant customers would be interested in ten (10) 1-hour episodes of a TV series based on the “Bosch” Pilot.  To that end, the “Bosch” Pilot episode premiered on Amazon Prime in February, 2014, and in March, 2014, Amazon Prime must have liked the crowdsourced feedback because Amazon Prime then formally announced that it had ordered a full “season” of 10 “Bosch” episodes.  On February 13, 2015, all 10 episodes of the 1st season of “Bosch” were released for viewing on the Amazon Prime Network.

The Future of Healthcare is always on the premises at “Doctors 2.0 & You”

       It would seem the upside to crowdsourcing is limitless and its uses are likely going to be increasingly diverse and perhaps even a necessary business tool for the most successful of businesses.  To that end, once patient wearables become pervasive and prolific, the convergence of increasing improvements in patient-centric healthcare technology, analytics from ALL patient social media activity & disease- and patient-specific data-mining of patient wearables will make the unthinkable, quite possible.

The Cure to Crohn’s Disease

      Accordingly, if IBD patients continue to actively and candidly participate in the different healthcare social media platforms and Crohn’s Disease-appropriate wearables are embraced by the Crohn’s Disease patient population, IBD medical researchers can presumably make viable that which has always thought to be unthinkable, namely, a cure to Crohn’s Disease.

(For a more detailed explanation of this “Crowd-Sourcing a Cure for Crohn’s Disease” hypothesis, please visit the long-form version of this Post on the journalistic blogging platform, “Medium.”)

Comment on Crowdsourcing a Cure to Crohn's Disease

How Anti-TNF Biologic agents treat Crohn’s Disease & Ulcerative Colitis

I recently posted this on Facebook as a “layperson’s” answer to someone with Inflammatory Bowel Disease (IBD) who asked if Anti-TNF drugs are basically analogous to chemotherapy and people seemed to respond extremely favorably to it as they indicated it provided them with a better understanding of this common but fairly complex issue.  Therefore, I thought I’d post it on my Blog to document my explanation for anyone in the future who seeks similar information.

While I am your ordinary 30-year Severe Crohn’s Disease patient who has been on all currently available medicinal therapies at one time or another (with the exception of “Entyvio”), I’ve also helped provide the “patient perspective” to various IBD-related scientific endeavors and that has helped me better understand how these biologic agents work to counteract the abnormally overactive immune systems in people with IBD.  I AM NOT A DOCTOR nor do I profess to be well-schooled in the complex biological mechanisms which seem to play a significant role in the development and progression of IBD, but I seem to have a basic and relatively simplistic understanding of this issue so that’s why I am sharing these thoughts.

But 1st – Biologics and IBD Doctors who have NO TREATMENT PLANS

Before sharing the aforementioned explanation, I must share a growing concern I have regarding Biologics which is focused at certain gastroenterologists who have no defined “treatment plan” and instead tell their appropriate IBD patients: “It is time to resort to the Biologics to better manage or control your Crohn’s Disease [or Ulcerative Colitis] to stave off surgery.  Which one do YOU want to go on?” 

In my humble opinion, providing the IBD patient with this “choice” of Biologic seems ludicrous since the main three (3) brand name Biologics, namely, Remicade, Humira and Cimzia, are literally different drugs; Infliximab, Adalimumab and Certolizumab pegol, respectively.  It is true the underlying rationale for the way in which these Biologics treat IBD is the same but they are administered differently, in different dosages and there are medical research studies with conclusions all over the place about whether one should be used before another or whether one is more efficacious in Crohn’s Disease rather than in Ulcerative Colitis or whether one is more effective in treating fistulas or abscesses or even about which one shows greater efficacy in treating IBD which occurs in different parts and levels of the diseased/inflamed gastrointestinal tract.

Biologics seem to affect many IBD patients differently

I know from personal experience how I experienced an anaphylactic reaction to Remicade after a few doses yet I know IBD patients who’ve been on Remicade since approximately 1998 without incident.  I also know I developed severe and disabling irreversible respiratory side effects after graduating to Humira whereas there are many other patients who never experience such symptoms or side effects.  Lastly, some IBD patients can be allergic to one Biologic but not to another one.  All of this information clearly demonstrates the possible different and seemingly “personalized” effects and efficacies of each Biologic on different IBD patients.

Therefore, it seems incumbent upon DOCTORS to make the choice of Biologic in treating severe or progressive IBD cases since it is they who have witnessed how each has worked in different patients and it is they who are privy to the numerous aforementioned studies about the different risks and benefits of each Biologic relative to certain IBD patient histories and/or to their respective known disease etiologies.   In that regard, all I ask is that these gastroenterologists act pursuant to a “Treatment Plan” which THEY devise based on their experience, knowledge of Biologic agents and their understanding of each IBD patient’s disease.  IBD patients who need Biologics to stave off surgery certainly have enough to worry about that they should not be tasked with figuring out which Biologic drug they should be taking for maximum effectiveness in treating their specific case of IBD.

IBD Biologics (immunomodulators) vs. Chemotherapy (or immunosuppressive) drugs

The potential side effects from Biologics can be as serious as those from chemotherapy but the underlying rational of how each treatment works is different. Biologics are referred to as Anti-TNF agents which specifically describes exactly what they do, that is, they slow down a certain protein/enzyme naturally created by the human body (namely, TNF) which is summoned by the body’s intestinal immune system to combat what it perceives to be threatening intestinal bacteria.  But people with IBD have intestinal immune systems which are “over-active” in that when they send TNF proteins to fix the problem and re-balance the bacterial components of the intestine, these TNF proteins either don’t know when to stop “fixing” the problem or they do so in such a way that they cause increased abnormal intestinal inflammation.  The consequences of this increased abnormal intestinal inflammation in people genetically predisposed to IBD can then initiate IBD or make those with IBD even sicker by way of more severe gastrointestinal problems or due to peripheral manifestations of IBD such as sacroiliitis, cataracts, inflammatory respiratory infections, virulent infections, organ failures, etc.

Soon after scientists definitively identified this role of TNFs in IBD, a few biologic drugs were created which effectuate a regulatory impact on these TNFs to prevent them from over-inflaming the intestine, which has scientifically known critical subsequent consequences causing or worsening IBD in patients who are genetically predisposed to it.  A problem with Biologics is that they are predicated on a theory tantamount to using a blowtorch to kill an annoying mosquito resting on a pillow.  More specifically, while these Biologics do exactly what they are supposed to, they are systemically administered and the aforementioned invented drugs which regulate TNF proteins can also evidently have a variety of deleterious effects on different organs and systems within the human body.

Why is there a problem with IBD Biologics?

It seems fundamentally sound to expect tampering with the human body’s chemistry (as in the case of regulating TNFs) to trigger reactive effects in other parts of the body, especially when the “tampering” is done systemically and not in a direct, targeted fashion, but the continued extreme suffering of IBD patients who had exhausted all other treatment options was understandably the priority in the creation of anti-TNF Biologic agents.  But it’s as if these Biologic drugs were created so myopically to influence one of the first major scientific IBD discoveries of practical and therapeutic significance that no one seemed to address the possible or even likely side effects of such potent body chemistry altering medication.  But I assume the FDA approved these Biologic medications because the Biologic drug manufacturers presented a statistically-relevant number of “studies” which convincingly indicated most people do not experience serious side effects from Biologic drugs which work exactly as designed in treating IBD and potentially creating a state of IBD remission.

That said, the side effects of Biologic agents have been known to cause medical problems more painful and debilitating than any IBD flare-up in the patients who are the unlucky ones in whom Biologics are either ineffective or cause dangerous allergic reactions or serious side effects ranging from liver problems to cancer to disabling and even lethal lung infections.

Summary

Accordingly, the possible serious side effects of immunomodulator IBD Biologic drugs occur differently than those resulting from the immunosuppressive side effects of chemotherapy. Notwithstanding the foregoing, there are numerous prestigious and comprehensive IBD research projects currently going on or being undertaken which acknowledge the aforementioned potential pitfalls and potential serious side effects of IBD Biologics and thus are focused on treating other known IBD intestinal triggers but with more targeted and potentially “personalized” drug therapies since no two cases of Crohn’s Disease or Ulcerative Colitis are seemingly alike due to the significant IBD causation role played by the complex interaction of genetics, the body’s immune systems and environmental factors.

Please share your comments regarding your experiences with Biologic Agents in the treatment of Crohn's Disease or Ulcerative Colitis.

Please share your comments regarding your experiences with Biologic Agents in the treatment of Crohn’s Disease or Ulcerative Colitis.

Entire 9/15/2014 Video Interview w/ Dr. Mark L. Chapman re: Inflammatory Bowel Disease

Inflammatory Bowel Disease Expert

Inflammatory Bowel Disease Expert

The people responsible for making this project a reality

It has been my pleasure to share the wisdom and experience of this brilliant Inflammatory Bowel Disease (IBD) expert who is one of the few gastroenterologists still practicing who was trained by Dr. Burrill  Bernard Crohn at Mount Sinai Hospital in New York City.  The wonderful and encouraging comments I’ve received from diverse Crohn’s Disease, Ulcerative Colitis and Indeterminate Colitis patients from around the world has completely validated all the hard work necessary to bring this ambitious project to viability. Accordingly, accolades are due to Dr. Mark L. Chapman, his staff, Mount Sinai Hospital, the NEW “Susan and Leonard Feinstein Inflammatory Bowel Disease Clinical Center at Mount Sinai Hospital,” my camera man and technical adviser, Dan Brumer, and my charity, the Crohn’s Disease Warrior Patrol.

The goal of interviewing Dr. Mark L. Chapman from Mount Sinai Hospital in New York City about all things patients need to know about Inflammatory Bowel Disease

My goal was to  take as much out of Dr. Chapman’s brain and get it on camera so that I’d could then edit it into easily consumable online portions of eight (8) short, topic-driven videos to help patients around the world who do not have access to such an knowledgeable, experienced, talented and dedicated physician regarding a disease which has created more questions than answers for the brightest medical and scientific minds spanning several generations and from both every conceivable prestigious academic research institution and practicing Crohn’s Disease, Ulcerative Colitis and Indeterminate Colitis doctors from the best medical facilities in the world.

The current pressing need is for safer, individualized, more targeted, more effective and less expensive IBD treatments or possibly an IBD cure or preventative genetic or biological  interventions

My aspirations with these videos seemed logical and obvious as I am an advocate for Inflammatory Bowel Disease, a 3o-year patient with Severe Crohn’s Disease and the Founder and President of a charity specifically designed to raise global awareness of IBD in the hopes that people around the world will better understand the multifaceted potential severity and pervasive effects of Crohn’s Disease, Ulcerative Colitis and Indeterminate Colitis such that these videos will only add to the current momentum to find safer, individualized, more targeted, more effective and less expensive IBD treatments or possibly an IBD cure or preventative interventions.  The need for such specifically targeted IBD treatments is now imperative because the systemic effects of the most efficacious current IBD treatments such as various immunosuppressive and biological agents are causing patients a significant number of severe side effects such that they are either trading in one disability for another or often opting for new, risky and unproven experimental therapies which are not sufficiently developed potentially causing even more serious problems.  Thankfully, however, Dr. Mark L. Chapman and Mount Sinai Hospital share my concerns and my “time is of the essence” motivation and their respective active participation in this project has been crucial.

Accordingly,  I have embedded the eight (8) videos below in chronological order from 1-8 and I’ve provided a succinct explanation for each so that there exists online a complete set of these videos which you can refer back to at your convenience.  Thank you for watching and sharing your feedback.

Video 1 of 8.  The length of the video is 8 minutes and 55 seconds.  

Video 1 defines the differences between Inflammatory Bowel Disease (IBD) and Irritable Bowel Syndrome (IBS).

 

 

Video 2 of 8.  The length of the video is 11 minutes and 18 seconds. 

Video 2 defines the differences between Crohn’s Disease, Ulcerative Colitis and Indeterminate Colitis.  

Video 3 of 8.  The length of the video is 10 minutes and 10 seconds. 

Video 3 explains the definition of Diverticulosis and how it differs from Inflammatory Bowel Disease. Dr. Chapman then explains the nuances involved with treating Pediatric Crohn’s Disease & Ulcerative Colitis patients.

 

Video 4 of 8.  The length of the video is 10 minutes and 59 seconds.

Video 4 focuses on the current contrasting and controversial styles of treating Inflammatory Bowel Diseases, i.e., “Top-down” v. “Bottom-up.”  Dr. Chapman also explains how he most effectively interacts with Crohn’s Disease and Ulcerative Colitis patients when they request certain biologic agents they’ve seen advertised on television. 

Video 5 of 8.  The length of the video is 9 minutes and 31 seconds. 

Video 5 focuses on the too-often long, arduous and stressful “diagnosis journeys” patients must take before they are properly diagnosed and treated for Inflammatory Bowel Diseases (IBD)  like Crohn’s Disease or Ulcerative Colitis. Dr. Chapman explains how he combats this decreasing occurrence by taking a compassionate and extensive Patient History, conducting a Physical Exam and carefully combing through all that was done previously in a patient’s case. While technological diagnostic testing for IBD is now state-of-the-art, the most accurate diagnosis still may depend on a simple, but thorough, Patient History. In that regard, Dr. Chapman shares his proven effective techniques for taking Patient Histories.

Video 6 of 8.  The length of the video is 10 minutes and 5 seconds. 

Video 6 focuses on how gastroenterologists diagnose Inflammatory Bowel Diseases such as Crohn’s Disease and Ulcerative Colitis. Dr. Chapman also explains how the simple, seemingly antiquated, “Small Bowel Follow Through” diagnostic test can still be quite effective, and in some cases, even more effective, than the latest technological diagnostic tests such as a Magnetic Resonance Enterography (MRE).

Video 7 of 8.  The length of the video is 11 minutes and 19 seconds. 

Video 7 focuses on a few “Viewer Questions” which seemed to be quite popular topics in various health care social media platforms amongst people discussing Crohn’s Disease and Ulcerative Colitis beginning with the recent troubling, but still rare occurrence of patients actually dying from Crohn’s Disease or Ulcerative Colitis. Dr. Chapman also explains how an IBD patient should interpret blood tests which are a common occurrence in the lives of Crohn’s Disease and Ulcerative Colitis patients especially given the potential side effects of the immunosuppressive and biologic agents currently given for treatment of IBD.  Dr. Chapman also shares his professional experience and insights with respect to treating IBD patients with the latest IBD drug, “Entyvio” or “Vedolizumab.”

Video 8 of 8.  The length of the video is 10 minutes and 42 seconds.

Video 8 focuses on the mystifying aspects of Inflammatory Bowel Disease (IBD) from whether or not Crohn’s Disease or Ulcerative Colitis is hereditary to the most promising IBD treatments currently being researched including stem cell therapy, small bowel transplants, fecal transplantation and personalized T cell immunotherapies.

Please share your comments regarding your experiences with Crohn's Disease or Ulcerative Colitis.

Please share your comments regarding your experiences with Crohn’s Disease or Ulcerative Colitis.

“Top-down” v “Bottom-up” Inflammatory Bowel Disease Treatments

This is Video 4 of 8 from my September 15, 2014 interview w/ Dr. Mark L. Chapman and focuses on the current contrasting styles of treating Inflammatory Bowel Diseases, i.e., “Top-down” v. “Bottom-up.”  Dr. Chapman also explains how he most effectively interacts with Crohn’s Disease and Ulcerative Colitis patients.

© 2014 CDWP  /  Copyright 2014  /  CDWP  All Rights Reserved

 Comments for Dr. Mark L. Chapman Interview

Treating Pediatric Crohn’s & Ulcerative Colitis Patients

This is Video 3 of 8 from my September 15, 2014 interview w/ Dr. Mark L. Chapman and focuses on the definition of Diverticulosis and how if differs from Inflammatory Bowel Disease (IBD) and then Dr. Chapman explains the nuances involved with treating Pediatric Crohn’s Disease & Ulcerative Colitis. Coming soon: Video 4 of 8 in which Dr. Chapman explains the different IBD treatment theories of “Bottom-up” v. “Top-down.” 

By way of brief background, I recently had the opportunity to interview a legitimate world-class physician, Dr. Mark L. Chapman of Mt. Sinai Hospital in New York City, about the chronic, incurable, autoimmune disease from which I have severely suffered for over thirty (30) years. But Inflammatory Bowel Disease (“IBD”) affects MILLIONS around the world, of all ages and ethnicities, and tends to “personalize,” or customize, its symptoms and severity leaving some with “just” an expensive chronic disease and others with a living nightmare in which the treatments are as pervasively devastating as the disease.

In association with a charitable organization I founded, namely, the “Crohn’s Disease Warrior Patrol” [“CDWP“], I’ve created eight (8) short videos from my ninety (90) minute September 15, 2014 interview with Dr. Chapman to help raise global awareness about the potential severe, disabling and devastating physical, emotional, psychological, professional, social, financial and familial effects Inflammatory Bowel Disease can wreak on one’s life.

Please SIGN-UP to be a Crohn’s Disease Warrior HERE at the website – it’s free.  To ensure seeing the continuation of such useful video information about Inflammatory Bowel Diseases such as Crohn’s Disease and Ulcerative Colitis, PLEASE DONATE to the CDWP HERE at the website.  Thank you.

Comments for Dr. Mark L. Chapman Interview

© 2014 CDWP

Copyright 2014 CDWP – All Rights Reserved

Meet a Member of the Crohn’s Disease Warrior Patrol

Ashlee Adams January 25 2014

 Please meet the newest Member of the Crohn’s Disease Warrior Patrol (the “CDWP“), Ashlee Adams of GetBetter.com.

If YOU would like a **Tax-Deductible $25.00 CDWP t-shirt, please visit the CDWP website or Tweet me @HospitalPatient.  Thank you.

You can view pictures of other CDWP Members at the below social media websites – where everyone looks as pretty as Ashlee :)  :

Flickr

Pinterest

** The Crohn’s Disease Warrior Patrol, Inc. (the “CDWP”) is a 501 (c) 3 Non-Profit Charitable Organization dedicated to Raising Awareness about the potential severity of Crohn’s Disease and Ulcerative Colitis.

Crohn’s Disease, Chemotherapy & “Humira”

MAW PPP Dec 4 2012

Where Have I Been?

It’s been a while since I’ve “blogged.” I don’t like to share my thoughts with the world when I am depressed nor do I share them about my “day-to-day” unless they involve something interesting, inspirational or instructional to me and to people around the world living with, and trying to manage, some form of chronic illness.  I don’t care how I come across in the entry just that I honestly share my health and chronic illness experiences with others for their betterment and hopefully for the betterment of healthcare, in general.  While I compile and battle through my “lessons learned,” I encourage you to read other blogs and watch other videos to diversify your knowledge. Crohn’s Disease can be devastating and puzzling and I certainly don’t have a monopoly on the most effective ways to deal with it.  But I have to live life in order to obtain my perspective and that’s exactly what I’ve been doing.  IMHO, sanity with Crohn’s Disease and chronic illness is all about maintaining Perspective.

As for writing from a depressed perspective, I think it would make for an entry too skewed toward the negative and that’s just not fair for me to represent, given that many, or at least some, people look to me for inspiration and I am a positive person such that it is against my nature to write something that would be depressing for the rest of time on the Web.  Complaining about the cards you’ve been dealt in life is akin to crying in a poker game about your hand while playin’ with John Wayne, Robert Mitchum and Paul Newman, circa’ “The Cincinnati Kid.”  I say, “Take it like a man [or woman] and play the cards you’re dealt.”  Worse that can happen is you will be immortalized like the aforementioned gentlemen.  It may be a painful, lonely and boring life, but you will inspire so many and at your funeral the worst people can say is that you were a “Stand-Up Guy [or Gal] who tried to help many.”  And there ain’t nothin’ wrong with that.  I’ve given a few eulogies in my life and being able to call the deceased a “Stand-Up Guy” who helped everyone he came into contact with made everyone in the audience smile.  In such a sad and often tragic setting, that’s pretty cool.

But, that said, I do get depressed but I try to stay away from the computer when that happens.  I find a move theater more therapeutic in such an instance because what’s better than getting immersed in someone else’s crappy life, marveling about how Bruce Willis and Harrison Ford never seem to age or how bizarre some aging beautiful, but woefully insecure, Leading Ladies look in High Definition?  I leave the theater feeling fantastic about all my scars.  So, for those of you who battle chronic disease, it’s okay at times to be depressed.  It is just my opinion not to Post at that very moment.  If you need to write for therapeutic purposes, by all means do so, just hold it back for 48 hours so you and your inner Editor can make sure it conveys your true intentions and not your secret yearning to be dealt a new set of life cards, for Robert Mitchum will find you and kick your ass back into reality.  But if after that 48-hour “Waiting Period” you still think it has value as a Post; go for it and it will stand on its own for all the world to consume. Those are my own self-imposed rules as “Managing Editor” of this Blog, just in case the boys are keeping track on how I’m handling he cards I’m dealt.  OK, Cincinnati?

 Why?

I’ve been reticent the past few weeks/months about my personal details because life has been difficult and I wasn’t sure how to handle or share it.  I guess I find it easier to tell a story after I’ve been through it so I can point out my mistakes, share my successes and learn from both.  Otherwise, a blog can become a verbal “real” Reality Show and I tried to TiVo “Crohn’s Disease” last night and not much came up (but I SWEAR that someone in Los Angeles, CA has been working on a Reality Show for people with chronic diseases).  I can’t ask anyone to understand that but I try to avoid making my life a “reality show” unless sharing medical happenings in real time is paramount to the story I want to tell because I write this Blog for the purposes of helping people looking for “something” to help them make sense out of living with chronic illness, especially an illness so odd, badly “marketed” and misunderstood as Crohn’s Disease and other Inflammatory Bowel Diseases (“IBD”).

The only exception to this is when I am battling a uniquely severe Crohn’s Disease “flare-up” which I think would help others, a long hospitalization for anything (since being a hospital patient is an experience like none other) or going through the process of Chemotherapy (which is just brutal and these days can affect MILLIONS all over the world).  Unfortunately, I’ve added the Chemotherapy exception because I have had to go through it for the second time in 2-3 years for a yet un-explained lung disorder or disease which, after a surgical lung biopsy, keeps coming up as me having “necrotic tissue” [i.e., dying tissue] in both lungs for which some of the most respected medical institutions in the United States have yet to explain despite their best of intentions to try and help me.

I’m working hard toward getting such an answer but that “journey,” like most in healthcare which seek answers to unprecedented questions, is proving to be a long, dark and lonely journey. (Just so you know, this lung “problem” causes Severe Shortness of Breath such that I must live like fictional aging/sickly character “Hyman Roth” in the film “Godfather II” so as to not aggravate my lungs and I also get intermittent “fever attacks” of 105 degrees of temperature.  I get such severe headaches from the 105 fever that I usually start to hallucinate.  But they go away after 6-8 hours so basically they remind me of the fun nights at college.  Still … .)

The Fine People you meet along the Way

As part of my journey, this spring I found a remarkable female Pulmonologist in New Jersey who might just be the most competent and thorough doctor I have ever met (sorry Dr. Mark Chapman but she’s much easier on the eyes that you are as a Brian Dennehy look-a-like!).  She’s the quarterback of my situation (but with Crohn’s Disease likely a part of the problem, Dr. Chapman is directly involved) and that now includes infusion of the chemotherapy drug, Cytoxan, once a month for six months by another extremely smart Hematologist/Oncologist.  But, all of my doctors agree that at some point SOON I must go to National Jewish Health, the number ONE respiratory hospital in the United States.  The slight complication is it is located in Denver, CO and the high altitude there will make it even more difficult for me to breathe.  That’s why the Chemotherapy already started in June, 2013 and the kind folks in Denver, CO have also started the screening process so they can soon see me for at least a week and hopefully diagnose what no one else has been able to do.  Then everyone can discuss the proper current treatment and any after-care medication. I don’t worry about anything and just trust my cards, I mean,  my doctors. 

Why?  Really.  I think, it’s the Biologic medication, Humira

In MY OPINION based on MY EXPERIENCE (that’s MY lawyer-speak to protect me from getting sued for all that I own, which, when you think about it, isn’t much at all but I disdain wearing suits and going to court), I think this rare and complicated lung problem I have has something to do with, or is directly caused by, the Biologics drugs I took for my Crohn’s Disease, most notably the drug “Humira,” the one I was on for the longest period of time. I never had respiratory problems before I started Humira and only suffered SEVERE hospitalized respiratory problems AFTER I took Humira.  To figure Humira has nothing to do with my lung problems is like not understanding the concept of physical attraction after spending just a few moments with the beautiful and engaging actress Rachel McAdams and then going home to your Mom and not having that same almost animalistic feeling.  But then you see a picture of Ms. McAdams again and “the fire inside” instantly lights up.  This before and after, or “ipso facto, as jurists might refer to it, means, “by the fact itself.” Now let me try it in a sentence:  I took Humira for my Crohn’s Disease for a rather long period of time and ipso facto I have a severe lung problem. It is damn possible if not likely or logical.

Respiratory Problems are noted as potentially FATAL Side Effects of Humira (i.e., Fungal Lung Infections) but Humira is SO NEW that the manufacturers, Abbott Laboratories, and the Food and Drug Administration (“FDA”) simply don’t know for sure whether that is true for every Crohn’s Disease patient, if there is a predisposed patient genetic component to contracting such side effects nor do they know which respiratory problems are exactly to blame for such Humira side effects.  However, upon first learning of such frequency and severity of Humira side effects, the FDA issued its “STERNEST” regulatory admonition called a “Black Box Warning” which required Abbott Laboratories to comply with the contents of the Black Box Warning by listing “disclaimers” about these side effects on the Humira “packaging.”  This is seemingly a solid regulatory plan but, like almost everything else in life, the devil’s in the details, and in reality, what is, and what is not, listed on the “packaging” of Humira is negotiated by Abbott and FDA lawyers.

Okay, that’s life and each party has legitimate business and regulatory interests motivating its negotiating strategy but when is “packaging” ever of consequence to a Crohn’s Disease patient eagerly anticipating his or her last opportunity at successful treatment of going into Remission when all other conventional drug therapies have been exhausted?  Do they sell Humira in supermarkets like shampoo where savvy shoppers can compare packaging labels between such potent Biologics?   This scenario was keenly recognized by the FDA and in an attempt to reach as many patients as possible with an important Humira-related Black Box Warning, the FDA went where most patients go, i.e., to YouTube.  Thankfully, the social media dinosaur that is the FDA had the smarts to have its high-level executives read the aforementioned Black Box Warning on YouTube.  For this, I commend the FDA on their efforts to reach as many Crohn’s Disease patients as possible with such social media activism.

Banks & Sub-Prime Lenders /Pharma and the FDA?

While Pharmaceutical (“Pharma”) lawyers and drug lobbyists in good faith attempt to comply with the FDA’s latest “sternest” warnings about early or current patient possible frequent and severe side effects of Humira, they are paid to negotiate or “influence” them down such that they are minimally legal compliant with the FDA’s “stern” warning so as to not negatively or adversely affect the drug’s allure to prescribing doctors and desperate patients as the “Miracle Drug” they portray Humira to be on their TV Commercials.  The FDA, on the other hand, is motivated to bring a drug like Humira to market because it “possibly” provides an answer to incurable illnesses and struggling patients with no other choices.  But is the FDA “pressured” to “come to the rescue” perhaps prematurely?  Is that wishful and well-intended premature approval or Pharma financially-fueled possibly premature approvals for drugs like Humira?  The philosophy behind this match of Pharma and the FDA’s regulatory authority is not all that different from that forged between Banks and Sub-Prime Lenders a few years ago which ultimately almost brought down the ENTIRE United States and possibly WORLD economy.

Who Represents Crohn’s Disease Patients at FDA Humira Regulatory meetings?

 “Let’s Make a Deal” Game Show Host Monty Hall could probably better explain what actually goes on behind closed doors between the FDA and some Pharma companies looking to quickly bring a drug like Humira to market. But who represents the Crohn’s Disease patients during these negotiations which are potentially rigged against the Crohn’s Disease patients themselves?  To that end, a gregarious and smart doctor I met at a speech I recently gave in New York City tried to explain this to me by advancing the notion patients have every right to be at such FDA “regulatory hearings” as they are given “Advance Notice” in the Federal Register.

Given this “Advance Notice,” I asked him how many patients showed up at the last FDA Hearing regarding expanding the approved usage of Humira to certain Ulcerative Colitis (“UC”) cases and he said NONE.  But he added there were at least 37 doctors in attendance each of whom presented cases of the use of Humira in UC cases which resulted in positive outcomes with no side effects.  I remarked the UC patients on Humira who developed Ovarian Cancer, Lymphoma, Liver Damage and Lung Disease must have missed that edition of the Federal Register.  He looked at me with a condescending look likely thinking, “Oh well, just another bitter patient,” until I explained to him that patients read the Federal Register about as frequently as he reads the pornographic magazine Jugs – although given my luck I may have coincidentally been wrong!  Seriously, the FDA got it right when they turned to YouTube because these days educated chronic disease patients congregate on various health care social media platforms and by posting important Humira Black Box Warnings on YouTube, the FDA will eventually reach the affected/interested patients. But the Federal Register?

Humira TV Commercials – a Patient Education Program?  NOT!!!!

Have you seen Abbott’s omnipresent Humira Network Television Commercials?  Does a level of FDA-induced “candor” described above come across or is Humira marketed more like an Erectile-Dysfunction drug promoting the possibility of regaining a certain positive lifestyle?  Does that accurately explain what Humira does for Crohn’s patients?  Does it adequately explain the patent risks?  The video portion is glamorous for 30 seconds or so but the 30-seconds or so of fast-talking voiced-over side effects Disclaimer is downright frightening when you focus on it.   Listen next time.  Also, aren’t you also curious, how Abbott Laboratories reacted under such intense Regulatory scrutiny about Humira by the FDA?

Despite the FDA also issuing at least some serious aspects of these Black Box Warnings to the manufacturers of the two (2) other popular Biologics given for Crohn’s Disease, namely, Janssen Biotech, Inc. for the drug “Remicade” and UCB for “Cimzia,” Abbott Laboratories was the only one which, in response, implemented a multimillion  dollar US Network Television Commercial Blitz.  Here it is: Humira for Severe Crohn’s Disease.”  It seems almost as if Abbott is afraid Humira will soon be taken off the market and they have to make as much profit, as fast as possible.  By the way, Janssen and UCD did not at all change the commercialization of their respective Crohn’s Disease drugs. If anything, they both increased their Patient Education Programs, a patient-friendly logical step.

This is the game played between Pharma and the FDA so as to appear legally compliant but to protect Pharma shareholders from patient lawsuits for side effects which aren’t somehow covered by the broad generalized disclaimed ones conveyed to patients by lawyered-up marketing language used by Abbott in all of its promotional materials.  Given my experience, the FDA is LOSING this game and they are letting Abbott possibly falsely influence a passive United States TV audience of millions.

Again, I commend the FDA for trying to regulate this drug at each and every turn but with health care social media turning into “word-of-mouth” on steroids, they can’t keep up with the effects of a multimillion dollar Humira TV ad campaign.  More dangerously, I think the FDA got snookered a bit when these Biologics were first approved and issued to patients.  There have been too many severe and frequent side effects which additional research time and drug modification could have avoided – in my opinion.

But, Humira does help MANY Crohn’s Patients w/ NO Side Effects

Call me crazy, but it is entirely possible that I might just be a Crohn’s Disease patient (possibly one of many) with a Humira-caused respiratory problem which both the FDA and Abbott have never seen before.  What else would explain a side effect from such a NEW drug not being detected by such prestigious institutions as the Pathology Department at The Mayo Clinic?  Before the drug companies insulate themselves from liability by including every possible “expansive” side effect word in those “voiced-over” TV side effect disclaimer warnings, they must first convince the FDA they are serving a disease constituency of Crohn’s patients with a SAFE drug for whom there is no cure and thus, this is their last hope.   In that regard, I must note here that for MANY Crohn’s patients, Humira works as designed with few or no side effects.

But for MANY Crohn’s patients like Natalie Quinn (simply judging from her YouTube Video), Humira either did not work or it caused such severe life-altering side effects that she’d been better off living with Severe Crohn’s Disease, without ever taking Humira.  More importantly, many of these Severe Crohn’s Disease patients who have unsuccessfully taken Humira wind up with conditions and diseases much worse than Severe Crohn’s Disease, including death.

By way of the REAL LIFE  EXAMPLE bravely submitted by Natalie Quinn to YouTube in a Video entitled, “What Humira did to me!!!!!,“ PLEASE WATCH IT BECAUSE IT reminds me of the FURY of Crohn’s Disease, the potential severity of Humira side effects and how incredibly lucky I am to simply have breathing problems as a possible result of both. 

People, PLEASE start paying attention to this phenomenon of Miracle Drugs like Biologics and Humira being fast-tracked by the FDA and THANK people like Natalie Quinn who are the TRUE heroes who battle Crohn’s and all it involves every waking hour of their lives.

Future Postings

 This Blog started out as a hobby for me but has wonderfully turned into something much more.  I have so enjoyed hearing from other patients and I have learned a great deal from their stories.  In that regard, I intend to update the Blog as events warrant but please be patient with me as the Chemotherapy is difficult and gets me so fatigued I can barely keep my head up at the computer screen.  I’m also trying to capitalize on the extraordinary early adoption of the “Crohn’s Disease Warrior Patrol” and candidly, THAT is what gets me excited every day because “People helping other People truly can be the best medicine.”

Please keep reading and SHARING YOUR COMMENTS BELOW.  Thank you.

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