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.

Doctors who don’t LISTEN

The fallacy of trusting some Doctors

The fallacy of trusting some Doctors

     I had a horrible doctor appointment today with a local well-respected Ophthalmologist.  In order to see her, I had to complete a PRE-APPOINTMENT 30-Page “Patient Information Packet.”  It included all the typical information but also demanded precise details regarding the medications I was taking, the eye surgeries I have had, CDs of any recent Head or Brain CTs or MRIs and a most accurate/succinct description of the reason I sought her expertise.  I complied even though it was time-consuming and somewhat costly. But, I assumed my diligent efforts and investment would pay off with being the beneficiary of this physician’s undivided attention and sage advice. I was a SCHMUCK.

      In short, I’ve had Severe Crohn’s Disease for 30 years and have had 2 Cataract Surgeries, an Ocular Migraine and Severe Dry Eye so bad, that my local eye doctor recently put me on the drug “Restasis” because he felt the time had come where the vision in my left eye could be compromised.  That scared the crap out of me so I resorted to the above as I felt he was venturing into territory in which he was no longer qualified to travel or at least there were doctors who presumably specialized in eye problems experienced by patients with inflammatory-based autoimmune diseases.  There are, so I made the appointment.

       I arrived at the facility on-time and an efficient technician took various measurements of my eyes by rote.  He asked me why I was there and after cutting me off before I could explain the possible pervasive aspects of my problem, he told me my Crohn’s Disease is something they don’t consider in evaluating my eyes.  Huh?  I had been CRYSTAL CLEAR with the kind folks who set up the appointment and they assured me this was the correct doctor to see given my carefully articulated concerns.  When I tried to explain how my eye had been so dry in the past that I once cut my Cornea in my sleep as I slowly awoke and merely blinked my eye, he was unfazed and kept moving forward with the tasks for which he was responsible.  I was like a pimple on his ass which wasn’t bothering him at the moment so he didn’t have a care in the world.

      He walked out of the room not saying anything and then another doctor-looking person came in and escorted me to another ocular-exam-looking room.  She placed me in the chair saying NOTHING.  I tried to ascertain who she was and what I was doing in this new room, but she apparently had the personality of a handball since she could not speak.  I understand that certain people don’t want to get “chatty” with the patients but when a patient is being moved from one room to another, by different people, and each looks at you like there is a palpable smell of “ass” in the air, I’d like some additional information.  Call me crazy.

      I waiting in the chair.  Then I waited.  Then the doctor walked in.  I could sense immediately when she came in that the ass-pimpled technician and/or the human handball must have told her I was a “difficult patient” who didn’t belong at this particular Ophthalmic Practice. She smiled with the sincerity of the last man at the disco smelling from “Old Spice” and asked me what brought me to see her. I succinctly explained my predicament and that I was concerned my local eye doctor was in over his head and/or I hoped there were specialists for this sorta stuff and I was told she practiced within that specialty.

      Her preconceived agenda was obvious as she interrupted me almost immediately to ask me how my vision was.  I told her I wished she’d let me finish because my medical concerns were more about the future given the possible progression of my Crohn’s Disease and some possibly hereditary contributions.  She didn’t listen to a word I said and instead interrupted me again and this time, in the most condescending manner, she took the opportunity to didactically “teach” me how to interact with a physician.  She said something to the effect of: “This is a conversation; I may interrupt you; you may interrupt me.”

       To myself I said, “You are a condescending a-hole.  But unfortunately you practice the specialty of medicine I need to consult with in order to better understand my medical problem such that I could devise disease management strategies so I never have to be treated so inhumanely.” But I respect doctors so I thought I would appeal to her sense of “reasonableness” and I interrupted her and respectfully explained that I would appreciate her LISTENING to my succinct story especially since it is ALL SPELLED OUT IN THE 30-PAGE “Patient Information Packet” I HAD TO FILL OUT PRIOR TO THE APPOINTMENT and she hadn’t yet even TOUCHED THE DOCUMENT and its numerous attachments!  She did not react too kindly to my suggestion and while moving back in her chair to exit the room she suggested to me that perhaps this was not a good “fit” and that I should see another doctor?

      While I SAW RED IN MY MIND, I was quickly emphatic that I was not going ANYWHERE after her office staff confirmed several times SHE WAS THE DOCTOR I SHOULD SEE GIVEN MY PROBLEM and because I had spent a great deal of time and some money providing her with precise medical information about my rather unpredictable and complex case which she hadn’t taken the slightest interest in as evidenced by her refusal to merely LISTEN to me.

         I think she was a bit surprised that I stood up to her so firmly and without one second of hesitation, so she finally started to listen.  But she kept interrupting me and NOT ONCE DID SHE LOOK AT THE 30-PAGES OF INFORMATION I HAD SUPPLIED nor did she ask what medications I was taking.  She then performed the same perfunctory eye exams that my local eye doctor had performed and proclaimed my vision to be very healthy.  Her patronizing positive emphasis was made to make me feel as if I had just gotten a kiss on the cheek from Beyoncé and noticed a special gleam in her eye indicating that, just maybe, we had that rare connection.  I was being played as she simply wanted to get through the examination without incident and I was getting angrier by the second.  I respectfully asked her for her MEDICAL ADVICE in terms of how long to take the Restasis and her response was so safely legally generic it was as if I had asked the guy at the local Hardware Store what he thought.  It was a COMPLETE WASTE OF TIME.

         The only positive occurred a few minutes later when I politely told the front office staff that I had just been treated like a piece of garbage by their physician. The office manager, Allison, took me aside and asked me about my underlying condition.  She was genuine and interested.  After a TWO (2) MINUTE CONVERSATION, she said this:  “If you were my brother, I would send you to Dr. **** because all he does is specialize in Inflammatory Conditions involving the Eye.”  THAT DOCTOR IS EXACTLY WHO I NEED TO SEE yet I had to sit through this bullshit charade.  I thanked her profusely and she gave me this doctor’s business card and even wrote the phone numbers of his new offices on the back of the card.

       I don’t understand why some doctors act so arrogantly and inhumanely when one day it is CERTAIN that they too will be patients.  This becomes even more bothersome when I have the absolute privilege of meeting doctors, nurses, nurse practitioners and physician assistants who LISTEN and want to help me and attempt to bring to bear their talents and experience to help solve or address my medical problems.  Maybe the Hippocratic Oath and its corollaries should not include something seemingly simplistic and legally motivated such as: “Do No Harm.”  Instead, the ENTIRE OATH should be: “Respectfully, listen to the patient and try to identify, and then, if possible, solve or manage his or her medical problem.  If you cannot do so, respectfully refer the patient to another doctor who can.”

Why Crohn's Disease and Ulcerative Colitis patients must help each other as Doctors tend to shy away from the "grey," weekends, holidays & ER Trips.

Please leave your comments about patient experiences with disrespectful doctors

When Doctors disappear, Crohn’s Disease Patients ONLY have each other

The grim reality for Crohn's Disease & Ulcerative Colitis patients.

The grim reality for Crohn’s Disease & Ulcerative Colitis patients, especially on weekends and holidays.

     Another weekend went just went by during which I encountered a very experienced and intelligent patient with Crohn’s Disease posing the following question to a well-trafficked Inflammatory Bowel Disease (IBD)-dedicated “Group” within a health care social media platform: “Do you think I should to the hospital?”  The question was followed with his symptoms following recent Bowel Resection Surgery during which his terminal ileum was removed. That vital information was followed by a succinct description of his most immediate three (3) experiences going to the closest emergency room (ER) for these very same SERIOUS symptoms and being swiftly discharged (after waiting an average of 5 hours each time to be seen) and told by the ER staff, “You have Crohn’s Disease, you have to learn how to accept it and deal with it.”  WTF?????

        I have been in this unenviable situation at least seventy-five (75) times when the area in and around a fairly recent Bowel Resection Surgery or Strictureplasty for my Crohn’s Disease started to cause pain and partial obstructions.  Pain can be addressed with medication but the source of the pain MUST BE DETERMINED because the brewing underlying problem could be LETHAL.  If that is the case, why are ERs around the United States so quick to discard these patients?  Granted, there is no knife in these patients’ stomachs but metaphorically they could be in a worse position.  Incredibly, I don’t blame the ER staff because they must triage patients and simply patch them up so they make it through the weekend or holiday and get to see their doctors as soon as possible.  Therefore, where are the gastroenterologists over the weekend or during a holiday when a post-operative Crohn’s Disease patient develops painful and potentially dangerous complications?

     When I was younger and was in this position, the best strategy from a patient’s perspective was to call your gastroenterologist and if he or she recommended you go to the hospital, you were going under the auspices of your doctor and that held a great deal of credence.  But with the advent of “hospitalists,” there is no longer a “personalization” to emergent patient care for those patient’s suffering from incredibly complex, chronic, incurable autoimmune illnesses like Crohn’s Disease.  This was also not a patient crying “Wolf,” nor “Uncle” at the first sign of discomfort.  This patient had endured painful symptoms for several days and his doctor didn’t seem that concerned even though they seemed to be worsening and the weekend was quickly approaching.

     What is wrong with some doctors who refuse to anticipate the type of situation this desperate patient was put in this past weekend when he essentially “crowdsourced” his decision to yet again go back to the emergency room for dangerous symptoms related to a recent Bowel Resection Surgery for his Crohn’s Disease?  Don’t they understand how the status of a post-operative Crohn’s Disease can turn on a dime?  Don’t they have any compassion for a patient who has been through several surgeries such that his word should be trusted that something is wrong?  Are they waiting for the patient to pass out from intestinal-perforation-type pain in order to take them seriously?

      Granted, I understand that some Crohn’s Disease patients have a very difficult time managing the disease, especially post-operatively when unrecognizable “healing pains” may occur or bowel habits may change and worry sets in which often sends them to the ER needlessly (and when I was younger, this did happen to me).  I also understand that ER personnel are not trained to spot or treat the nuances of the different degrees of Crohn’s Disease.  But the patient’s gastroenterologist should take more interest in the patient when he or she respectfully contacts them with a potential problem and a weekend or holiday is fast-approaching. 

 Crohn’s Disease is hard enough to manage without gastroenterologists NOT trusting experienced patients. Moreover, scheduling a future out-patient diagnostic test to resolve the experienced patient’s problem when it appears likely to be a fistula, abscess, infection or obstruction is UNACCEPTABLE.  Something has to change when an experienced Crohn’s Disease patient is so “scarred” from past 5-7-hour unhelpful ER visits that he Crowd-Sources his decision to go back to the ER when he is obviously VERY SICK and his doctor has left him with no instructions to rely upon for guidance.

    Sadly, I have come to accept this situation as just another “symptom” of Crohn’s Disease.  While this may sound like a complaint more appropriately directed at the overall United States healthcare system, IBD patients certainly know what I mean.  It quickly becomes demeaning and the patient’s input becomes determinative of care and timing of care yet too many gastroenterologists and ER doctors don’t “trust” patients with Crohn’s Disease or Ulcerative Colitis because it is never a “black and white” situation; always grey.  Too many medical professionals these days are uncomfortable “solving problems” and operating in that “grey area” so IBD patients please understand that we MUST HELP EACH OTHER.  That’s very sad and this is why, “Patients helping other IBD patients is often the best medicine.”

Why Crohn's Disease and Ulcerative Colitis patients must help each other as Doctors tend to shy away from the "grey," weekends, holidays & ER Trips.

Why Crohn’s Disease and Ulcerative Colitis patients must help each other as Doctors tend to shy away from the “grey,” weekends, holidays & ER Trips.

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

Patient Tips re: Pain Management Medicine

This Blog Post is the third in a 3-Part Series on the Practice of Pain Medicine from a Patient's Perspective.

This Blog Post is the third in a 3-Part Series on the Practice of Pain Medicine from a Patient’s Perspective.

I find this medical specialty uniquely interesting because it is experienced by patients with all sorts of different diseases, ailments and pains yet there is still no objective manner in which to describe or chronicle “Pain.”  Trying to “codify” a “Pain Scale” is like trying to devise a “Scale of Good-Looking-Ness” for an online Dating Site. My pain of a “9” may only be a pain of a “4” for you just like I may find a woman to be a “10” whom you deem to be a “5.”  (If she’s smart, quick and funny, I’m sorry, but that adds to the total!)  The subjective nature of this very common chronic pain problem combined with its often even more worrisome solution involving prescription narcotics makes Pain Medicine a challenging endeavor for BOTH patients and healthcare professionals.  For this reason, I decided to share my knowledge of, and experience with, Pain Management, by way of this 3-Part Series in the hope that others, i.e., patients AND healthcare professionals, will be better equipped to handle the inherent challenges I’ve encountered, which I am sure are also experienced by MANY others.

To that end, Part 3 of the Series is comprised of “Patient Tips” addressing each of the above-referenced five (5) questions.  As I’ve had to change Pain Management doctors a few times due to “life” circumstances such as changes in my health insurance, relocation for a new job, my doctor retiring, etc., I thought sharing the lessons I’ve learned from each experience would be helpful. I’ve also come up against extraordinary difficulties interacting with this medical specialty in various hospital settings, whether it was a planned hospitalization or an unpredictable one.  Rather than write about these different perspectives, I’ve decided to TELL YOU about them in the below five (5) short videos.

In case you missed Parts 1 or 2 of this Series on Pain Management, please go back and read: Part 1 – “What to look for in a Pain Management Physician;” and Part 2 – “The Pain Medication Agreement” – the Devil’s in the Details.”  In any event, thank you for your interest and I look forward to any constructive feedback.  Again, thanks for reading and watching.

Video 1 – The importance of Communication & Candor in the Pain Management Doctor-Patient relationship.

This 6-minute Video details the importance of Communication and Candor in the Doctor-Patient relationship within the medical specialty of Pain Management.

Video 2 – How to change your Pain Management Physician

This 7-minute Video explains the challenges involved with changing Pain Management Physicians and details the importance of precise, ongoing Preparation in executing such a change.

Video 3 – The Mutual Evaluation Process in finding a NEW Pain Management Physician

This 7-minute Video explains and shares anecdotal evidence concerning the challenges involved with finding a NEW Pain Management Physician and details the Mutual Evaluation Process which must go on between Doctor and Patient.

Video 4 – Patient Tips on using the Pain Management Service in the Hospital

This 9-minute Video explains and shares anecdotal evidence regarding the challenges involved with getting reasonable pain relief via the “Pain Service” inside hospitals for both “planned” (i.e., Hip Replacement Surgery) and “unpredictable” hospitalizations (i.e., a severe Crohn’s Disease flare-up involving an obstruction).

Video 5 – When your Pain Management Doctor changes your narcotic pain medications, should you relinquish your excess narcotics when asked to do so by your Doctor?

This 4-minute Video explains the dilemmas involved when your Pain Management doctor switches you to a different narcotic pain medication and then asks you to relinquish to his office all of the excess narcotic pain medication you have in your possession from the previous narcotic medication you were using.

Please share your comments or experiences regarding interactions with Pain Management Physicians or Pain Medicine. Thank you.

Please share your comments or experiences regarding interactions with Pain Management Physicians or Pain Medicine. Thank you.

Pain Medication Agreements – Devil’s in the Details

Prescription Drug Overdose

The Devil’s in the Details

The “Numbered Comments” below correspond to the Numbered Paragraphs of the Sample Compilation Pain Medicine Agreement which is posted below in “bite-sized” chunks for ease of reference.  My Contract Comments are intended strictly to point out to patients who must sign these Agreements that many of the seemingly inconsequential first-appearing Patient Paragraphs contain subtle “physician termination triggers” which can be used by the physician to end the relationship with the patient pursuant to over-broad or completely physician-subjective patient compliance standards.  These Patient Paragraphs which LOOK straight-forward also too often contain subtle but patently unreasonably strict and/or vague terms and conditions with which the patient must comply or be terminated and condemned to eternal Pain Management perdition.

Accordingly, the “devil’s most assuredly in the details” in these Pain Medication Agreements and too often the practical effect is a resulting Agreement which can be terminated by the physician “at will” [i.e., whenever he or she desires to do so].  This resulting potentially unstable Doctor-Patient relationship is contrary to the patient’s understanding that he or she is engaging the Pain Management physician to help improve his or her “quality of life” and entering into a Pain Medication Agreement to simply secure and document the specifics of the Doctor-Patient relationship; which in the medical specialty of Pain Management, are based on mutual candor, communication and trust.  In this regard, patients typically believe this Agreement can only be breached by patients if they violate a material term or condition of the Agreement which is specifically drafted to account for the unusually harsh consequences to the physician of a pernicious patient. Therefore, patients should always read these Pain Medication Agreements carefully to ensure they understand what is expected of them and they should always retain a copy of the signed Agreement as the ultimate accurate reference material regarding the various terms and conditions and other standards with which they must comply or meet.

Public’s Interest in preventing Prescription Painkiller Abuse

In a normal situation where both parties to an agreement have equal bargaining power such that neither has “leverage” over the other, the comments below would be drafted by attorneys and communicated to one another with the intention of modifying the agreement to be objectively fairer and less 1-sided.  But with these Pain Medication Agreements, the public’s interest in preventing well-publicized prescription painkiller overdoses and numerous instances of patients becoming addicted to prescription painkillers has all but negated the patient’s ability to make any significant changes to the Agreement due to the substantial legal and ethical consequences these physicians face when the narcotic drugs they prescribe to chronic pain patients are used incorrectly or illegally by untruthful, irresponsible, disrespectful, devious or criminal people posing as legitimate chronic pain patients.

Learning Practice policies which are NOT written in the Pain Medication Agreement

Given the practical realities mentioned above, I wouldn’t send these comments below to the Pain Management physician.  Instead, I would think about them and highlight the most important ones and then discuss them with the physician before signing the Agreement so that I could gauge why the physician has these de facto termination clauses hidden in various parts of the Agreement.  More specifically, as a patient, I would want to know, to the extent possible, if the physician has taken advantage of the 1-sided Pain Medication Agreement  to interpret even the slightest suspicion of a patient breach of the Agreement as justification to terminate it, or, if the physician has a more reasonable track record and understands that the structure of this particular Doctor-Patient relationship is unusually very important to both parties and requires ease of communication and mutual trust so the patient can rely upon a secure relationship to improve his or her quality of life knowing the Agreement will only be terminated when it has actually been breached.  There is a nuance to the tone of this discussion but the objective is for patients to learn as much as possible about a Pain Management Practice which is not evident from the Agreement they must sign to be treated there.  These brief discussions also reveal important personality traits about both physicians and patients and it is this type of information patients need in order to determine if the Pain Management Practice is the “right” one for them.

What Can Go Wrong for Patients w/ Pain Medication Agreements

As a Patient Advocate, I have seen too many instances of patients being terminated from Pain Management Practices based on mere suspicion when the physician chose to error on the side of caution instead of simply talking to the patient to learn the truth.  I have also seen too many patients terminated from Pain Management Practices because of petty misunderstandings and personality conflicts with physicians couched as patient breaches of the Agreement, when each of which could have been easily avoided had the Practice’s or physician’s communication policy been more reasonable and the physician more accessible.  In that regard, I think patients should keep these possibilities in their minds and discuss them with prospective Pain Management physicians before signing any Pain Medication Agreement.

Post-Termination Clause to prevent Patient Narcotic Withdrawal

A “concept” which should be discussed between physicians and patients prior to signing the Agreement, and then specifically codified in the Agreement as agreed upon, pertains to the inclusion of a reasonable Post-Termination – Pain Management Prescription Drug Treatment Plan for terminated patients who’ve developed a legitimate, “medical dependence” on prescription narcotics so that shortly after an abrupt termination the patient doesn’t go into “Narcotic Withdrawal.” Such a terminated patient would likely be immediately seeking a new Pain Management doctor but that is difficult to do when the patient is going through the visible signs of Narcotic Withdrawal.  Moreover, a patient abruptly terminated from a Pain Management Practice such that he or she would then experience Narcotic Withdrawal and could be seriously suffering physically, mentally and emotionally seems to be an unreasonable “punishment” for breaching an agreement regarding his or her medical care.  Obviously, there should be criminal, irresponsible and disrespectful patient exceptions to this Post-Termination consideration and I would suggest generally deferring to the physician to suggest what he or she thinks is reasonable.  That said, this is the one provision I would respectfully insist be included in the Agreement because terminations happen and the result can be a terrified patient incapable of helping him or herself.

As I did my research for this Post, I was shocked at how many standard Pain Medication Agreements made no mention of addressing the patient’s legitimate “medical dependence” on prescription narcotics during the 30-60 days immediately following the termination. I reference a 30-60 day time period because I think that is a reasonable estimation of the time it would take such a patient to engage with a new Pain Management physician.  Just like I completely understand the need for these Pain Medication Agreements to comprehensively protect physicians from unscrupulous patients, I think it’s unreasonable for physicians to disregard the serious and seemingly punitive medical repercussions for such a patient medically dependent upon prescription narcotics after an abrupt termination of this Agreement.    

#PainManagement Agreement

Paragraphs 1 and 2 of Pain Medication Agreement

Patient Paragraph Section

Paragraph 1 – This clause is perfectly reasonable. (A “patient tip” is to always be building a “file” of your chronic medical condition to document both your history taking prescription narcotic pain medications and your need for a Pain Management doctor, should that ever be necessary to prove, by getting in the habit after the beginning of each calendar year of asking the pharmacy which fills your narcotic prescriptions to give you a computer print-out of all narcotic drugs dispensed to you during the previous calendar year.)

Paragraph 2 – This clause is questionable. A patient would not want to agree to this, as written, because he or she would want prior written notice that a law enforcement agency is investigating before granting such a broad authorization granting unfettered access to his or her medical records to afford the patient some time to clarify what could be a simple case of mistaken identity or to prove identity theft, each of which could be cleared up within a few days’ of prior reasonable notice of any such investigation. Additionally, possible misuse, sale or diversion of his or her pain medication” is too vague and low of a standard to trigger a law enforcement agency investigation during which the patient should voluntarily waive his or her right to privacy and voluntarily surrender open access to his or her medical records.

Paragraph 3 of Pain Medication Agreement

Paragraph 3 of Pain Medication Agreement

Paragraph 3This clause is possibly worrisome. It is certainly the patient’s responsibility to make sure he or she doesn’t run out of pain medication prior to the next scheduled monthly appointment because if the patient takes the medication as prescribed, there should be enough of it to get the patient to the next scheduled monthly appointment with the doctor. But with some diseases and conditions such as Crohn’s Disease, unexpected severe flare-ups could deplete the patient’s amount of monthly pain medication such that he or she will need more of it during that particular month. But in this Agreement clause, the Pain Management physician is disavowing responsibility for helping the patient in case he or she is in such a difficult and unusual medical situation and that difficult situation requires the physician to help the patient on a weekend or a holiday.  That said, it is certainly a “red flag” if the patient continually exceeds the agreed-upon monthly allotment of pain medication, but provided the patient responsibly communicates to the physician the timely change in the frequency and intensity of pain, isn’t this type of contemplated difficult medical situation why the patient is hiring a Pain Management physician?

Controlled Substance Agreement

Paragraphs 4 thru 7 of Pain Medication Agreement

Paragraph 4 – This clause is possibly worrisome. I reiterate many of the same points I made regarding Paragraph 3 above and apply them here.  The language pertaining to the patient consequences from not keeping an appointment or canceling an appointment without complying with very specific notice provisions is rigid, unnecessarily “absolute” and potentially an Agreement termination trigger for the physician.  For example, it is possible the patient might fall off a ladder and fracture his or her back (as has recently happened to me) and thus be unable to attend his next scheduled monthly appointment, but as proscribed by this language, that patient will be punished by not being given his next month’s medication refill simply for having the bad luck of sustaining disabling injuries from accidentally falling off a ladder and sustaining such serious injuries they prevented him from keeping and attending an appointment. You’d think these “penalties” would be waived if the patient reasonably and timely accounted for such accidents or unexpected intense flare-ups of his disease preventing him from keeping an appointment but there is no such wiggle room in this Agreement.   Additionally, may constitute grounds for immediate termination  …” [emphasis added] is vague and meaningless to the patient as a standard.  It means the Pain Management Practice can do whatever it wants in such a scenario.   The rigidity of this type of language would make me think this Pain Management Practice is not a good fit for me.

Paragraph 5 The Random Drug Testing clause is perfectly fine. I’d only ask that it be written into the Agreement that the Pain Management Practice pays for the cost of this Random Drug Test since as a patient I have never had to pay for this test.  If it is the Practice’s policy to have patients pay for the Random Drug Test, they should indicate its cost in the Agreement.  The first part of this Paragraph seems wholly inappropriate for this type of Agreement and is completely unacceptable because its language undercuts the mutual trust necessary for a productive and successful relationship between the Pain Management physician and patient. More specifically, when patients see a Pain Management physician, they are entrusting them with the sole reasonable power to help them manage their pain and improve the quality of their lives.  But this language seems to empower the physician to do anything he or she wants and removes any obligation from the physician to help the patient achieve his or her aforementioned objective. To that end, this clause seems to imply a disrespect of patients with chronic pain and complex pain issues.

Paragraph 6 The absolute nature of this clause is concerning because I have seen other Pain Medication Agreements which essentially say the same thing with the exception that stolen medication would be replaced ONE TIME ONLY and ONLY IF a reasonably satisfactory Police Report was supplied to the Practice in a timely manner. Again, in combination with some of the other “absolute” clauses in this Agreement, this is probably the wrong Pain Management Practice for me.

Paragraph 7This clause is perfectly reasonable. If I lived in a state where medicinal marijuana was legal, I would want to specifically exclude that “drug” in case my doctor and I decided we were going to try it at some point because many Crohn’s Disease patients tell me it helps them with pain.  But, I would never “indulge” without first asking my Pain Management doctor if it was safe given the other drugs I was taking and I received his prior written permission to do so.

Pain Management & Crohn’s Disease

Paragraphs 8 and 9 of Pain Medication Agreement

Paragraph 8 – This clause is perfectly reasonable. Same comment as in Paragraph 5 (i.e., I would want language indicating that the Practice pays for the drug test, etc.).  Please notice how the language used in this Paragraph 8 is more respectful of the patient than the wording about the same exact issue in Paragraph 5.  This is because the two (2) clauses are from different Pain Management Practice Agreements.  In that regard, I might infer from repeated instances of such stark differences that the Practice which uses Paragraph 8-like language to communicate the Random Drug Testing seems to be more reasonable and likely more consistently operated on a mutual trust principle.  I would prefer such a Pain Management Practice.

Paragraph 9 This clause is perfectly reasonable.  I would only ask what type of “Notice” communication this Practice prefers (i.e., fax, email, etc.) because I would want them to get my Notice message and I also would want to use some type of communication medium which can provide me with a Confirmation Notice just to prove I complied with the Agreement. The only other issue I could see with this Paragraph is ensuring the appropriate prescribing of narcotic cough medication is not in violation of this clause.  This is applicable if the patient knows beforehand the specific cough medication his Pulmonologist prescribes a few times a year for a serious lung disease or if the patient gets a severe case of Bronchitis and is prescribed the same type of cough medication. To avoid confusion, I would discuss this with the doctor before signing the Agreement and if I knew which cough medication I was routinely prescribed, I would list it on an Exhibit and have it attached to this Agreement.  Regardless, I still would provide Notice to the doctor under this clause anytime I was prescribed the cough medication.  I just would prefer they are aware of it in case I got so sick that I missed the “next business day” deadline because when my lung problem acts up, I tend to sleep a great deal.

Paragraphs 10 and 11 of Pain Medication Agreement

Paragraphs 10 and 11 of Pain Medication Agreement

Paragraph 10 – The 1st sentence of this clause is perfectly reasonable. The 2nd sentence, however, is very important information for the patient to be aware of but which should have been discussed by the patient and doctor at some point in the initial “non-prescribing” “consultation/mutual evaluation.” In any event, including more “and may be reasons for the doctor to discontinue prescribing to me” language does nothing but add more “grey” area to the physician’s sole discretion to discontinue prescribing a certain pain medication and that would concern me if this type of language were a pattern in the entire Agreement.

Paragraph 11This clause is a good example of the “grey” area I was referring to in Paragraph 10 above because this Paragraph clearly obligates the patient to attend “required follow-up visits with the doctor” but it doesn’t identify the frequency of these “required follow-up visits with the doctor” nor where they will be located, yet, failure to do so results in the discontinuation of this treatment. There is also no mention of an acceptable excuse for not being able to attend nor is there language which explains how the patient is to notify the doctor in case he or she cannot attend these follow-up visits. The 2nd sentence of this Paragraph obligates the patient “to participate in other chronic pain treatment modalities recommended by the doctor” but it does not provide even a clue as to what these other treatment modalities may be. Is this clause requiring the patient to participate in acupuncture, and if so, for how long?  Is this clause requiring the patient to participate in an “ayahuasca” medical trip to the Amazon jungle?  The vagueness of this clause conceivably provides the doctor with additional reasons to terminate this Agreement and since Pain Management is a major life priority for these patients, I think it is disrespectful to make them feel so insecure.  To that end, I would respectfully ask for a reasonable explanation of the issues above and then have them clarified in the Agreement, provided they place no more than a reasonable burden on the patient.

Paragraphs 12 thru 14 of Pain Medication Agreement

Paragraphs 12 thru 14 of Pain Medication Agreement

Paragraph 12 – This clause is inappropriate and unnecessary because by providing the doctor with the sole and subjective power to refer the patient to a drug treatment program merely because the doctor “suspects” the patient is becoming addicted to the prescribed pain medication, the physician has created another termination trigger to utilize if the patient reasonably disagrees and refuses to seek “help” at such a program.   Moreover, the language in this clause obliterates the mutual trust which must exist between a Pain Management physician and a patient for their relationship to be productive and successful.

In more practical terms, if this clause were in an agreement between a client and his or her hairstylist, it would read as follows:

“I understand that there is a small risk that I will be unhappy with my new haircut such that those people close to me will tell me to my face that it sucks. This means that I might become deeply disturbed by the haircut, blame it for getting angry at everything that bothers me in life, or I will be unable to control just how angry I become as a result of this new haircut.  If this occurs, my hairstylist will never cut or style my hair in the same manner and my hairstylist will refer me to a ‘haircut anger management program’ for help with this anger problem.”    

More seriously, based on my experience taking different narcotics for different pain issues at different stages of severity during my 30-year battle with Crohn’s Disease, my Pain Management doctors always listened to me and watched me very closely to determine whether I was ever addicted to a pain medication drug.  In that regard, if my doctor sensed or thought it possible I was using a drug for any reason other than to control my pain or that I couldn’t control my use of the drug, we would discuss any such observations and, if necessary, I was switched to a different drug.  There were never any conclusions verbally made about me or my overall pain management care nor did I ever acknowledge any such addiction.  I simply trusted my doctor and never wanted to become addicted to a particular pain medication so I tried whatever was suggested by my doctor to control my pain.

If I knew my Pain Management doctor was contractually obligated to refer me to a “drug treatment program” based solely on his or her unilateral suspicion of some vague and subjective definition of “addiction,” I would never trust them and therefore would never consider such doctors to help me manage my pain. In this Agreement, it appears from this clause that the doctor will always error on the side of assuming the patient is guilty and thus addicted to a particular drug, and short of some reckless, irresponsible or criminal patient behavior, I would expect more trust from my Pain Management doctor.  Accordingly, I would respectfully confront the doctor who expected me to sign an agreement containing this clause and ask why I should trust him or her when to join their Pain Management Practice I must sign away my right to self-preservation?

Paragraph 13The 1st sentence of this clause is generally reasonable although I would discuss the same concerns set forth above in Paragraph 3 regarding a month or two (2) of pain emergencies or of particularly severe flare-ups during which additional medication might be needed by the patient.  The 2nd sentence is another example of a Pain Management doctor wanting another vague reason to terminate his relationship with a patient.  To that end, what exactly is meant by the phrase, “[a]ny signs of misuse of the medication …”?  What are “signs of misuse”?  Are they objective or subjective “signs”?  Can the patient quickly appeal a decision of “misuse,” especially when it now provides “reason” for the doctor to terminate the Agreement?  Is that appeal process reasonable?

The 2nd sentence should be a very serious concern because people who become lifetime patients with chronic pain typically go through so many difficult emotional experiences, sometimes just to even get the correct diagnosis after YEARS of being mistreated and misdiagnosed, that having to worry about their Pain Management doctor surprising them one day with this clause and terminating their relationship is an added amount of stress which does not belong in this Doctor-Patient relationship.  I would respectfully articulate this to the doctor and ask why it seems he or she needs a “disguised out” in almost every contractual clause of the Agreement and yet the patient cannot hold the doctor accountable to anything in the Agreement?

Paragraph 14Other than the part of this “Catch-All” termination clause which prohibits the patient from obtaining pain medication from anyone else other than this doctor, the rest of the Paragraph seems inappropriate to be included in this type of Agreement because it seems to presume the doctor is using only one (1) pain medication to help the patient and when that stops working or it presents a danger to the patient or “the doctor believes the patient is no longer a good candidate to continue the medication” (???), any member of the doctor’s medical staff can terminate the Agreement.

Call me crazy, but, isn’t it the Pain Management doctor’s JOB to use the right drug OR Treatment Method to treat a patient’s pain? In that regard, isn’t it possible, and likely probable, that the patient’s medical circumstances will change over time such that the doctor will need to try different drugs or techniques such as epidural injections, trigger point injections, acupuncture, etc. to achieve the patient’s consistent primary objective of reasonably managing his or her pain?  Therefore, why is the patient’s apparent evidentiary reasonably non-therapeutic response to a particular pain medication or the doctor’s subjective belief that the patient is no longer a good candidate to continue a certain pain medication grounds for ANYONE on the Practice’s medical staff to terminate this Agreement?  I would never let a Pain Management doctor treat me who asked me to sign a Pain Medication Agreement with this clause in it.  However, I sure would be curious why this clause is in the Agreement.

Physician Cancellation Paragraphs 1 to 5

Physician Cancellation Paragraphs 1 to 5

“My Physician will cancel my contract:” – Section

Paragraph 1 This clause is perfectly reasonable. 

Paragraph 2 – The vague or non-existent medication storage standard makes this clause, at best, worrisome, and at worst, ridiculous. Is this doctor planning a house inspection of the patient’s home to determine how he or she is storing the pain medications? I am joking; no, I am actually mocking the incredibly vague language used in this clause.  But, more seriously, when failure of the patient to comply with this clause grants the physician the power to cancel this Agreement, I fear we are not far away from surprise home inspections of people with chronic pain who take prescription narcotics so they can alleviate their suffering just enough to have some semblance of a quality of life.  In fact, I would even ask the doctor if that is what this clause means.  I would understand if it listed a “consequence” of failing to properly store the medication as the termination trigger.  But, by itself, this clause is another ambiguous and possibly ridiculously intrusive example of Pain Management doctors having no bounds to their feelings of entitlement to protect themselves from chronic pain patients who conceivably could place them at professional risk.

Paragraph 3 – This clause is perfectly reasonable BUT without a reasonable and timely  “appeal mechanism” in the Agreement, this could be one person’s word against the patient and then an honest mistake or a person’s bizarre vendetta against the patient could abruptly terminate the Agreement and cause the terminated patient to go into Narcotic Withdrawal.

Paragraph 4 – This clause is perfectly reasonable provided the patient is made aware that the drugs he or she obtains from other specialty doctors for pre-existing, provable medical conditions do not have stimulant or anti-anxiety effects. I mention this because many patients with chronic pain have autoimmune diseases and thus they have medical problems which require treatment by doctors in a variety of medical specialties.  To that end, I think it is fair to assume everyone knows what is, and what isn’t, a pain medication, but some drugs prescribed by a patient’s pulmonologist or urologist, for example, might have off-label effects which could be in violation of this clause. Accordingly, I would respectfully discuss this with the doctor and mention every drug typically prescribed to me by these different medical specialists and then codify the doctor’s observations in the Agreement by way of an Exhibit so that I’m not at risk of being terminated by my Pain Management doctor for taking a necessary drug for my lungs which happens to have a stimulant side effect.

Paragraph 5 – This clause seems inappropriate for this type of Agreement. Similar to my comments to Paragraph 14 above, I don’t understand why a patient’s significant side effects to a pain medication would cause a physician to terminate this Agreement when there are so many other safe and effective pain medications for the doctor to choose from to treat that particular patient’s pain such that it is merely a question of finding the drug best suited to safely treat or reasonably control a patient’s pain. If a Pain Management physician is unwilling to treat a patient’s chronic pain problem by taking the time to find the appropriate pain medication which works best without significant side effects to that particular patient, I wouldn’t want to be treated by this physician.

#PainManagement Contract clauses

Paragraphs 6 & 7 of Physician Cancellation Section & 3 Post-Cancellation Paragraphs

Paragraph 6 – This is too vague of a standard. Sometimes, “life” happens and appointments must be changed or rescheduled. I would certainly understand the implementation of a Cancellation Policy but as written, I have no idea what that means.

Paragraph 7 – This Catch-all clause must be deleted because it wreaks of being drafted by a sloppy business attorney who is basically saying, “If I forgot anything, this catch-all clause will cover it.” It won’t.   Clauses like this belong in Asset Sale Agreements and not in agreements which serve as devising the structure of a mutually-trusting Doctor-Patient relationship.

 “Upon Cancellation of my Contract:” – Section

Paragraph 1 – This clause is minimally reasonable BUT the phrase “will either stop or taper me off my medication as necessary to avoid withdrawal symptoms” is essentially meaningless because “as necessary” is going to be determined solely by the physician and he or she will likely not be in a benevolent mood in the instance of Cancellation. Instead, I would suggest that the physician make the decision for the question contemplated in this clause only on strict medical grounds depending upon the duration and dose of the cancelled patient’s narcotic pain medication history. If the physician decides a taper schedule is necessary for the patient to avoid withdrawal symptoms, it also should be devised on strict medical grounds depending upon the duration and dose of the cancelled patient’s narcotic pain medication history. Ideally, I would also suggest the taper be for sixty (60) days or two (2) months to afford the patient a reasonable amount of time to engage a new Pain Management Physician.

For these (and other) reasons, it is imperative that Pain Management patients keep accurate records of the duration and dose of all narcotic pain medications they have taken both prior to being treated by this physician and during this Agreement.

Paragraph 2 – This clause seems reasonable because it is innocuous in that it is just indicating that a drug-dependence treatment program “may” be recommended. However, such a “recommended” notation may become a permanent part of the patient’s medical records and THAT is problematic because then this clause, as written, implies that the “Cancelled” patient needs drug-dependence counseling or detox when the Agreement, as presently written, could have been terminated or cancelled for reasons that have nothing to do with the patient having an addiction problem.  Therefore, I would respectfully discuss this with the doctor and ask that it be removed or reworded with the above in mind.

Paragraph 3 – This clause seems reasonable. This is a difficult Paragraph to codify because it is very kind of the terminating physician to assume a contractual obligation to refer the terminated patient to another Pain Management Practice.  Therefore, I think patients would be better served by suggesting contractual language which establishes a reasonable “Post-Termination Pain Medication Treatment Plan” to avoid going through Narcotic Withdrawal.

The End.  

(In Part 3 of 3, my next – MUCH SHORTER – Blog Post, I will share some Patient Tips, for example, on how to always be prepared to find a new Pain Management Doctor should your Pain Medication Agreement be terminated abruptly, you choose to terminate it, your doctor retires, you relocate to another state or your health insurance changes and you can no longer afford to see your current Pain Management Physician.)

 

A Patient's Perspective on the Contract Clauses in "Pain Medication Agreements"

A Patient’s Perspective on the Contract Clauses in “Pain Medication Agreements”

The Patient’s Perspective re: Pain Medicine Agreements

(This the first of three (3) Posts about being a Patient in the medical specialty of Pain Management.

Post 1 – Educate Patients about the issues involved with selecting the Pain Management physician right for them;

Post 2 – I will provide comments to the clauses contained in the below Sample Compilation Pain Medicine Agreement for the purposes of “educating” patients about the agreements they are signing and how best to ensure their compliance with them.  I encourage patients to discuss the resulting issues with the potential new Pain Management doctor and incorporate his or her answers and explanations into the information they consider in making their selection of the right Pain Management doctor for them.    

Post 3 – I will share some helpful Patient Tips from my extensive experience dealing with Pain Management doctors regarding how to always be prepared to find a new Pain Management doctor should your Pain Medicine Agreement be terminated, you choose to do so, your doctor retires, you relocate to another state or your health insurance changes such that you can no longer afford to be treated by your current Pain Management physician. I will also share some patient tips on how to maintain a credible file about the patient’s need to be treated by a Pain Management physician and the various ways in which to facilitate Pain Management care in a hospital setting after a painful surgery, during a long painful hospitalization or even prior to a surgery which is known to be very painful.)

#PainMedication Agreement for #PainManagement

Extraordinary Pain Management Physicians

Please note that the above “Agreement” (actually Page 1 of same) is a compilation of the different contract clauses of significance to Patients, which I have either seen in the different Pain Medicine Agreements I was asked to sign in order to be treated by a Pain Management physician or from the numerous Pain Medicine Agreements I found during a Google Search in preparation for writing this Blog Post.  Additionally, I feel the need to convey the difficulty I had in writing this Post (which is why it has taken so long to complete) because I am so appreciative of the dedicated, compassionate and professional doctors who practice Pain Management and I do not want to confuse my criticism of Pain Medicine Agreements with the way Pain Management is practiced or by those doctors who practice it.  Finally, due to the passage of even more stringent laws pertaining to the prescribing of narcotic drugs, pristine record-keeping requirements and the specific operation of a Pain Management Practice, it is fair to say these doctors often risk their professional medical licenses to help patients like me, for whom “Pain” is a medical problem separate and apart from any underlying disease or reason which causes it.

The personalized medical treatment required to address, manage and control my pain is extraordinary in this day and age of established healthcare protocols which are followed by too many doctors who simply don’t even listen to patients or won’t let themselves “hear” patient concerns because they are too “programmed” to facilitate the reimbursable “transaction” to get to the next patient. These ordinary doctors are risk-averse due to our litigious society and tend to stick to disease and condition treatment protocols which are widely accepted as “reasonable” medical treatments in the context of medical malpractice lawsuits.  But the Pain Management doctors who’ve treated me are “problem-solvers” and when I come to them with a problem, it then becomes their problem.

More specifically, by listening and hearing my particular pain concerns and trying to devise a pain treatment plan to best combat MY specific problems, these compassionate Pain Management doctors have enabled me to enjoy a decent “quality of life” making memories with the people I care most about despite being deemed systemically disabled from thirty (30) years of Severe Crohn’s Disease which has included twenty five plus (25+) surgeries, two hundred (200) hospitalizations, seemingly never-ending dental work,  unusual complications or side effects from surgeries or medications and grossly disproportionate painful inflammatory reactions to the simplest of maladies.  While my medical history tends to explain my body’s inflammatory reaction, inaction or over-reaction to the aforementioned often painful medical problems, most other doctors nevertheless are skeptical of my pain or they refuse to believe all of these medical realities can happen to one person.  The egocentric nature of most other doctors only reinforces their conclusions and they put me on the “defensive” immediately after they read my medical history, which is extremely detailed to account for such cynicism. But regardless of whatever proof I provide, these other doctors are always unwilling to help ME or to even try and solve MY problem.  This was, and is, not the case with the few extraordinary Pain Management physicians I’ve been fortunate to find.  To that end, I am forever grateful to these consummate professionals.  Thank you Drs. K, H, G and D.

#Pain #Medication Agreement  for #PainManagement

The Purpose of Pain Medication Agreements – in theory

The purpose of a Pain Medication Agreement (a/k/a Medication Use Agreement, Chronic Pain Medicine Agreement, Narcotic/Opioid & Controlled Substance Agreement, Medication Contract, Pain Treatment Agreement and other similar configurations of the same key words/phrases), in theory, is to define the specific structure of the Doctor-Patient relationship when the patent seeks treatment within the medical specialty of Pain Management.  This is necessary because the Practice of Pain Management has a fundamental “loophole” like no other medical specialty; that is, there is no objective Pain Scale to rely upon in assessing the presence, absence or severity of a patient’s pain.  In that regard, on a Pain Scale of 1-10, my “8” and your “8” could represent very different levels of pain severity thus conceivably requiring very different pain medications or at least different doses of the same pain medication. It is therefore difficult for Pain Management doctors to account for patients who “rate” their pain incorrectly or inadequately, purposely or otherwise, or for doctors to weed out patients who lie about their pain to feed an addiction or to serve some other nefarious purpose because the doctor’s ability to gauge the presence, absence or severity of pain is essentially limited to only his or her observational skills of a physical examination and the patient’s word.

The consequences to both doctor and patient of this pain severity determination could not be higher because the treatment for pain usually involves the doctor prescribing potentially addictive and strongly regulated narcotic pain medications. Ergo, the Pain Medicine Agreement is necessary to both protect patients from themselves due to the addictive qualities of the prescribed opioids and to protect Pain Management physicians from jeopardizing their mandatory compliance with the increasing number of comprehensive law enforcement and medical ethics rules and regulations when they unknowingly treat unscrupulous, reckless, criminal, irresponsible or addicted patients.  These laws, rules and regulations mandate the controls for the prescribing and record-keeping of these powerful mind-altering and potentially addictive drugs.

Since the public has a strong interest in preventing the well-publicized and seemingly annual increase in prescription painkiller overdoses and in the prescription drug addiction problems of people of all ages from all walks of life, Pain Medication Agreements are usually drafted without any patient input since it is the physician who would face the legal and ethical consequences of these tragic events or devious people.  But some agreements are so 1-sided and over-populated with ostensibly subjective physician termination triggers, the patient needs to have a better understanding of these types of agreements either before selecting a Pain Management physician or after the agreement is signed so he or she can ensure their ongoing compliance with the Pain Medication Agreement.  I hope to do that with this three (3)-part Pain Management Series of Posts on my Blog.     

#PainMedication Agreement for #PainManagement

Why am I qualified to opine on Pain Medicine Agreements?

As a 30-year Severe Crohn’s Disease patient who has undergone twenty-five plus (25+) surgeries and two hundred plus (200+) hospitalizations related to this gastrointestinal, autoimmune and incurable disease, I’ve had a Pain Management physician for many years once gastroenterologists no longer felt it medically appropriate to address my “pain” and viewed my “pain problem” as a medical issue separate and apart from my Crohn’s Disease which warranted referring me to doctors who specialized in treating Pain.  I have also experienced the unique challenges of changing Pain Management physicians when my health insurance changed and my Pain Management physician was no longer a “member” of the groups of doctors my new health insurance company covered at a reasonable reimbursement rate and I could not afford to pay the large remaining co-payment.  This process of change is much more complicated than changing doctors in any other specialty due to the lack of trust propagated by the loophole caused by the lack of an objective Pain Scale.

I have also had to “start over” as an adult when I relocated from New Jersey to Santa Monica, California and that entailed initiating relationships with a variety of new doctors because my Crohn’s Disease affected several different parts of my body from my eyes to my mouth and from my GI tract all the way to my rectum, and all places and body parts in-between.   Therefore, I was tasked with finding the “right” Pain Management physician “for me” while I was coping with the stress of relocation and beginning a new job. This process is similarly more complicated than it appears, as it is in merely changing Pain Management doctors, and it requires proper planning and at least one (1) “consultation” with the prospective new Pain Management doctor to ensure there is a good fit between the patient and the physician.  I also made a similar change when my Pain Management physician retired.  Additionally, having had surgeries or been hospitalized for lengthy periods of time at several different hospitals for different medical problems related to my Crohn’s Disease, I’ve had to interact with new Pain Management Practices and physicians in each hospital and sometimes post-operative pain treatment plans were designed for me by my Pain Management physician at the time in close consultation with the Pain Management doctors at the hospital.  Each time, however, something substantial went wrong at the hospital and I had to coordinate the management of my pain from my hospital bed. But I learned more from the problems than I did from the “smooth sailing.”

I was also a “transactional” entertainment attorney for approximately twenty (20) years and in that capacity I frequently drafted contracts, analyzed contracts and negotiated contracts until a few years ago when I was deemed “systemically disabled” by virtue of the numerous direct, and indirect, disabling effects of my Severe Crohn’s Disease. (Given my extensive experience in dealing with Pain Management physicians and my significant legal experience evaluating contract clauses of many different kinds, in Part Two (2) of this Series, The Patient’s Perspective re: Pain Medicine Agreements, I will provide comments on the clauses contained in the above Sample Compilation Pain Medicine Agreement for the purposes of “educating” patients about the agreements they are signing in order to get the pain medications they need and how best to ensure compliance with them so as to not jeopardize obtaining their pain medications.  I will suggest more reasonable language for each clause, if necessary, as if I were representing the Patient, but given the already-mentioned strong public interest in the way in which this medical specialty is operated, there should be no expectations my comments of suggested language will be implemented.  Instead, I encourage patients to discuss these issues with the potential new Pain Management doctor and incorporate his or her answers and explanations into the information considered in making the selection of the Pain Management physician who is right for them.)

Doctor – Patient Relationship in Pain Management

A skilled and experienced Pain Management physician employs other reasonably reliable scientific and psychological tests to assess the level of a patient’s pain for the purposes of prescribing the least amount of pain medication required to adequately treat and control the patient’s pain so he or she can safely regain a “quality of life” reasonably commensurate with their lifestyle. A good working relationship or “collaboration” between a patient and a Pain Management physician is one which reasonably takes into account the patient’s individualized need for specific doses of the different pain medications based on his or her medical need and/or provable medical history successfully taking such prescription narcotic drugs (as well as his or her willingness to try reasonable alternative pain-reducing modalities such as acupuncture, epidural injections, etc., when, and if, they are suggested by the physician).  The patient must assume an appropriate sense of responsibility when taking these strongly regulated opioids and he or she must consistently display complete candor with the physician.  As for the physician, he or she must effort to listen (and hear) the patient so he or she can treat the patient in a safe manner which is reasonably consistent with the patient’s medical needs and lifestyle.

Perhaps more than in any other medical specialty, Pain Management is predicated on the unequivocal communication between doctor and patient.  This is why it is imperative for patients to consult with a few different Pain Management doctors before selecting one to make sure his or her reasonable needs will be met at the chosen Pain Management Practice and that the doctor “understands,” or can relate to, the patient’s idea of “quality of life” given his or her medical status and lifestyle.

Codifying the Pain Management Doctor-Patient Relationship

In accordance with the foregoing, the Pain Medicine Agreement must codify the specifics and nuances of the Doctor-Patient relationship while addressing and cementing the “protections” mentioned above regarding the consequences of insincere, devious, criminal or irresponsible patients and also articulating the patient’s objective to better manage his or her pain and improve his or her quality of life.  In that regard, the Pain Medicine Agreement:

  • Ensures complete transparency regarding the dispensing and use of any narcotic prescription drugs so that the patient doesn’t “doctor-shop” and stockpile drugs to sell them or obtain copious amounts of narcotics from different doctors to feed their addiction, thinking no other doctor will realize what’s going on;
  • Ensures the patient obtains all narcotic prescriptions from only one (1) pharmacy which the patient identifies to the physician at the beginning of treatment, thus adding another layer of protection to monitor the dispensing and use of any narcotic prescription drugs;
  • Ensures the patient will not mix alcohol, illegal street drugs or mind-altering drugs with the strong narcotics being prescribed by the physician because mixing these substances could prove lethal to the patient;
  • Helps the physician identify if, and when, the chronic pain patient’s “dependence” on narcotics to control pain doesn’t slip into a dangerous “addiction,” to the point where the patient takes the narcotics for reasons other than to control pain;
  • Helps the physician alter, adjust and seemingly personalize the patient’s pain control medications for maximum effectiveness while also preventing the development of an addiction to these narcotic drugs rather than just a “medical dependence” on them (which is an acceptable but unintended consequence of prescribing opioid painkillers);
  • Assures the physician that the patient is actually taking the prescribed narcotic drugs, in the prescribed amounts, and not unilaterally changing the physician’s carefully designed pain treatment plan for taking these narcotic drugs to most effectively control their pain;  and
  • Protects the compassionate and trusting physician from irresponsible and dishonest patients or prescription drug addicts whose reckless behavior with these highly regulated prescription drugs could subject the physician to serious legal consequences and ethical violations from the various State and Federal law enforcement authorities and Medical Ethics Boards.

 Pain Medicine Agreements – in reality

In practice, however, virtually all of the Pain Medication Agreements which I’ve read contain contractual clauses which are blatantly 1-sided to protect the doctors and minimize their professional risk with respect to prescribing potentially addictive or lucrative painkillers (i.e., on the black market).  These agreements are also devoid of ANY patient considerations or objectives.  They are presented to the patient on a “take it or leave it” basis such that no drugs are prescribed until the Pain Medicine Agreement is signed by the patient.  Since patients suffering from chronic and severe pain can only get the appropriate narcotic pain medications from these Pain Management physicians, these 1-sided “agreements” are really “ultimatums” which the doctors do not even try to disguise as agreements.  These ultimatums serve to only highlight the unequal bargaining position between the parties, i.e., Doctor and Patient.  Moreover, many of these Pain Medicine Agreements contain ostensibly subjective termination provisions which enable the physician to terminate the Pain Medicine Agreement essentially at will and conceivably because of an unfortunate heated-disagreement fueled by a simple personality conflict which could have been avoided if the patient were switched to a different doctor in the Pain Management Practice.  Even worse, an unexpected termination combined with no termination provision establishing an immediate post-termination “pain medication treatment plan” during the 30-60 days following the termination could cause the patient to experience dangerous, extremely uncomfortable and humiliating Narcotic “Withdrawal.”

Abrupt Subjective Termination & Patient’s Narcotic Withdrawal

Narcotic Withdrawal has been described by patients who’ve gone through it as one of the worst ordeals a human can go through.  Typically it is not life-threatening but it is very uncomfortable and the symptoms include: excessive sweating, nausea, vomiting, diarrhea, restlessness, insomnia, severe depression, aches and pains, low energy, lethargy, anxiety, panic, chills, irritability, irregular heartbeat and high blood pressure. The acute symptoms can last for up to a week and it could take a few months for the emotional symptoms to dissipate and for the insomnia to return to normal.  But the timing and intensity of the Narcotic Withdrawal largely depends upon how long the patient was taking the opioid and in what dose. The abrupt termination of the Pain Medicine Agreement too often causes Narcotic Withdrawal because many of these agreements contain no provision to protect the patient in such an instance. Hence, it occurs when the patient suddenly stops taking the narcotic instead of gradually weaning off of it in accordance with a taper schedule devised by a Pain Management healthcare professional.

Punitive Effects of Termination & Patient Difficulty finding a New Pain Doctor

Besides having to endure the abrupt termination, the patient’s Narcotic Withdrawal symptoms most likely will affect his or her ability to go to work or to attend to other relatively immediate serious responsibilities. The patient would also have to find another Pain Management Practice to treat or help control his or her pain but that could be very difficult to do while physically and emotionally compromised due to the visible Narcotic Withdrawal symptoms.  Additionally, the patient will likely have to explain to any prospective Pain Management Practice why he or she is changing doctors and that usually entails a follow-up phone call from the potential new doctor to the doctor who terminated the patient and there usually are no contractual guidelines as to what the former doctor can, or cannot, say about the patient and why he or she was terminated.  Assuming the Pain Medicine Agreement contains no patient “termination appeal mechanism” and there is no mention of an immediate post-termination “pain medication treatment plan” so that the patient can find another Pain Management physician while still in perceivable good health, short of an obvious or abhorrent criminal act, is it really necessary to punish and humiliate a patient for breaching a 1-sided Pain Medicine Agreement such that he or she should have to suffer through Narcotic Withdrawal to the point where he or she might lose their job or possibly be admitted to a hospital?     

Are 1-sided Pain Medicine Agreement clauses legally enforceable?

I clearly understand and advocate the need for Pain Medicine Agreements but Pain Medicine Agreements are created WITHOUT ANY INPUT FROM PATIENTS and they are presented to patients to sign on a “take it or leave it” basis.  Usually, such a “take it, or leave it” contract, drafted by the party in control of such egregious unequal bargaining power, is treated by courts as a contract of “adhesion.” Accordingly, the Pain Medicine Agreement is a contract of adhesion because it is presented to the patient on a “take it or leave it” basis, it is drafted by the physician who is unilaterally in control of the agreement’s terms and conditions and the patient has no ability to negotiate because of his or her unequal bargaining position. However, the unfairness typically inherent in an adhesion contract is apparently offset in the case of the Pain Medicine Agreement by the public’s exceedingly strong interest in preventing prescription narcotic painkiller overdoses and the addiction to these prescribed opioids by people of all ages from all walks of life.

In that regard, the courts seem to currently view Pain Medicine Agreements as necessary to serve as guidelines for the structure and operation of a Pain Management Practice because the number of people who die annually from prescription narcotic painkiller overdoses and the number of patients who develop prescription opioid addictions seem to always be increasing yet there are also many patients suffering from chronic pain who have legitimate medical needs for these very effective medications.  That said, the aforementioned newsworthy issues are usually well-publicized and sought out by politicians looking to make a “name” for themselves by proposing new laws to help increasing overdoses and addictions from occurring.

The result is that besides the victims of these awful tragedies and the people who love them, people with chronic pain who need reasonable access to these pain medications are among the losers in this situation because they must often abide by Pain Medicine Agreements which are so 1-sided there is always a possibility they can be terminated by the physician at any time and then the chronic pain patient’s quality of life is destroyed.

 Unfair & Unconscionable Clauses of a Pain Medicine Agreement

To the best of my knowledge, no patient has ever challenged any of the aforementioned blatantly unconscionable clauses of certain Pain Medicine Agreements. But if that happens, and it probably will because politicians appear to be continually “pushing the envelope” in an attempt to make names for themselves by making it harder to get these prescription narcotics but, by doing so, I believe they are coming close to “throwing the baby out with the bathwater,” to the point where the needs of chronic pain patients will approach outweighing the public’s interest in this matter.   After all, most of these chronic pain patients are medically dependent upon these prescription drugs due to chronic, incurable diseases which they had no responsibility in causing.

Therefore, it is conceivable courts or arbitrators will sometime soon view certain Pain Medication Agreement clauses, or the omission of specific clauses in these contracts, such as the establishment of an immediate post-termination “pain medication treatment plan” during the 30-60 days following an abrupt termination, as unfair, and thus unenforceable against the patient, who is the party who had no opportunity to contribute to the language or inclusion of that particular clause in the Pain Medicine Agreement. Courts and arbitrators have a history of carefully reviewing challenged adhesion contracts and they have consistently voided certain clauses or provisions because they could have only resulted from significant differences in the negotiating leverage of the parties such that they are grossly unfair to the party with no or little negotiating leverage relative to the drafter of the adhesion contract.  Courts and arbitrators also strike out adhesion agreement clauses if they are unconscionable. Historically, reasonable, fair and necessary contractual clauses such as the post-termination “pain medication treatment plan” have been implied by courts and arbitrators as included contractual clauses of adhesion contracts for these same reasons.

 Summary

All that said, however, the public, understandably, currently has a very strong interest in this matter and as a result, patients must pay careful attention to the Pain Medication Agreements they sign because it may take a long time for the status quo to change.  I have pointed this out only to educate the patients who regularly or always must rely upon prescription narcotics to manage or control their pain in order to be as productive as possible in society and attain the highest quality of life.  It is just too bad how several tragedies and the acts of several devious criminals posing as patients have made life even more difficult for those people already trying to cope with genetically imposed medical adversity.

 The Patient's Perspective on #PainMedication Agreements

 

Crohn’s Disease – “Even doctors don’t take us seriously”

Mr Ed Jan 1 2015

The “Individualization” of seemingly similar

Crohn’s Disease and Ulcerative Colitis cases

The statement above was excerpted from a rather lengthy response attributed to a frustrated essentially life-long Crohn’s Disease patient in a recent Crohn’s Disease and Ulcerative Colitis Facebook “Group” when the virtual discussion focused on the tragic death of a young Crohn’s Disease patient soon after her obituary was posted on social media and Crohn’s Disease was listed as the cause of death. While it appears to be scientifically debatable whether the traditional chronic, autoimmune systemic effects of Crohn’s Disease can literally cause death, the writer of this generalized statement took issue with the inaccurate mainstream seemingly “bothersome” portrayal of Crohn’s Disease because “bothersome” does not reflect what is a chronic, incurable, Inflammatory Bowel Disease (IBD) which often causes severe, pervasive and disabling physical and emotional manifestations and can have a variety of lifestyle-altering effects due to it being an “Invisible Disease” and it is also a very expensive disease to manage.

While the above generalized statement does not apply to most gastroenterologists who treat Crohn’s and Ulcerative Colitis patients, it does represent an accurate window into the harsh reality faced by many IBD patients because every case seems to be individualized yet, too often, IBD or emergency room doctors fail to distinguish a severe, complex IBD case, which might require immediate medical or surgical intervention, from one that is also severe and complex but nevertheless holds steady at the “status quo.” Moreover, even the most experienced, dedicated and compassionate of healthcare professionals often disagree on the methods they use, and in what order they use them, in treating acute flareups of IBD and/or in managing IBD and/or doing both when the patient is an adult or a child who’s still growing. These “presenting” patient situations, and thus physician decision-making responsibilities, become even more difficult and when the patient has undergone numerous abdominal surgeries, suffers from chronic pain or doesn’t respond favorably to the most effective drug therapies.

UNACCEPTABLE “Homogenized” treatment of different IBD cases

The potentially dangerous homogenized treatment of IBD patients occurs for a variety of reasons, not the least of which is the lack of an agreed upon scientific pathogenesis which explains Crohn’s Disease, Ulcerative Colitis or Indeterminate Colitis [i.e., when symptoms of both Crohn’s and Ulcerative Colitis are present].   There are also disagreements amongst the smartest and most experienced of gastroenterologists and colorectal surgeons regarding the manner in which to generally treat these diseases and best utilize the most efficacious drug treatments [i.e., utilizing a “Top-Down” or “Bottom-Up” strategy].   In my humble opinion and based on thirty (30) years of experience with Severe Crohn’s Disease, the foregoing challenges in treating IBD, at least from a patient’s perspective, then become just additional symptoms which must be confronted  like all the other ones.

But it is patently UNACCEPTABLE when physician complacency is to blame for depriving IBD patients of the “personalized” care their unique case of Crohn’s Disease or Ulcerative Colitis requires due to their scientifically proven genetic predisposition for contracting an IBD.  More specifically, there still exists a rather large group of IBD-treating physicians who rely solely upon the current, apparently technologically sound and precise diagnostic tests to the DETRIMENT of the input of living, breathing IBD patients who simply want to help these doctors by contributing HOW THEY FEEL to the accrual of numerous factors which must be considered before an IBD physician devises a diagnosis and then the most efficacious treatment plan.

If a broken-down Car could TALK to the auto mechanic

explaining the symptoms associated with the car not starting,

don’t you think the mechanic would listen? 

Just imagine, for a few seconds, if a car with a perplexing transmission problem could actually SPEAK TO THE AUTO MECHANIC further elaborating on the challenging conditions which prevent the car from starting.  Wouldn’t the auto mechanic welcome such input?  Wouldn’t such input from the car likely provide invaluable information for the auto mechanic such that he or she would have a HUGE advantage over the auto repair shops whose cars were not able to explain their problems?

It is at the intersection of physician complacency and IBD patient crises when not listening to, or trying to appreciate, the pleas of an IBD patient, when catastrophic results are most likely to occur.

The indignities of having to “prove” to a gastroenterologist

in the Emergency Room (ER) of a New Jersey hospital

that I was suffering from EIGHT (8) Intestinal obstructions

Several years ago,  in approximately 1994, this happened to me when my known case of Severe Crohn’s Disease kept causing incredibly painful small bowel obstructions which prompted my parents to bring me to the ER of the nearest New Jersey hospital. Due to having apparently “bothered” the same covering gastroenterologist in that ER three (3) times in one week, with at least two (2) of these instances occurring at inopportune times such as at 4 AM, he had grown weary of my complaints because in his opinion the severity of my pain did not come close to matching the findings of the infallible diagnostic tests on file at the hospital about my case.  His routine physical examination of my abdomen also yielded little scientific evidence for him to take seriously my proclamations of escalating pain and associated pleas for help.  As a result, his increasing annoyance with me provided the fuel he needed to publicly question my integrity and manhood.  Then, in the presence of several kind and compassionate healthcare workers in that ER, each of whom was familiar with me and my Crohn’s case due to my then-frequent appearances in their ER, this heartless doctor accused me of manipulating the vagueness and “incurability” of my Crohn’s Disease to legitimately frequent the ER for the illegitimate purpose of enjoying the attention and the narcotic pain-reducing drugs.

A chronic patient without credibility will never be taken seriously 

Given my noticeable compromised physical and mental states, I was powerless to defend myself from these contemptuous, slanderous remarks made by my own physician.  I felt like a wrongly accused criminal in a John Grisham novel but just like in the movies made of these literary legal thrillers, I knew I had done nothing wrong and somehow would be vindicated in the end.  Without respect for my credibility as a patient with a disease often misunderstood, misdiagnosed or just “missed” by the smartest and most experienced of healthcare professionals, I knew I would never be treated fairly by this doctor despite a well-respected emergency room compromised of a tight group of dedicated, talented and hard-working healthcare professionals, of which my “Gucci”-loafer-wearing doctor was not a member.  [The “Gucci” comment was a running joke in my family at the time once my Mom or Dad had pointed out chronic patients like me helped pay for many of this egomanical doctor’s Gucci loafers.]

A chronic patient should take into consideration

the needs of those who care about him

While heading into New York City on an emergency basis and unexpectedly disrupting the lives of the many people who helped care for me was the exact situation I was trying to avoid when I engaged a highly-recommended New Jersey gastroenterologist whose gastroenterology practice was located close t0 both my New Jersey home and law office, it was obvious to everyone who cared for me, and even to a few of the ER staff members who were kind enough to whisper their moral support into my ear,  I knew I had to continue seeking an answer to my painful intestinal problem before I lost control over my situation and wound up in an operating room in a strange New Jersey or New York hospital. To that end and knowing I would likely suffer another small bowel obstruction shortly after being discharged from the ER, I asked my arrogant Gucci doctor to help me put off the pain for just a few hours so I could travel into New York City and see my regular gastroenterologist, Dr. Mark L. Chapman.

Why I took a “vacation” from mt New York City gastroenterologist?

I had never stopped technically consulting with my NYC gastroenterologist, Dr. Mark L. Chapman, but at the time I was practicing law in New Jersey and it became impracticable for me to see him for routine or even acute Crohn’s Disease matters because the mere travel time involved with going back and forth from New Jersey to NYC would have cut into my billable hours at the law firm.  Dr. Chapman understood my ambition to succeed despite my aggressive form of Severe Crohn’s Disease so he referred me to a local New Jersey gastroenterologist who he had helped train and thus was able to vouch for his capabilities to properly handle my complex case.  My problems was never with that doctor but the inconvenient flare-ups of my disease seemed to always occur when the same condescending Gucci-wearing gastroenterologist was the “covering” doctor on nights, weekends and holidays.

No matter what, ALWAYS be respectful when

addressing a healthcare professional

Probably feeling as if my polite request for pain medication validated his unethical and wholly inappropriate personal swipes at me, my pompous ER gastroenterologist was quick to comply with my respectful request because that meant he could go home sooner.  My parents were active participants in the entire situation but they were unable to remain objective at that relatively early stage of my life with Crohn’s Disease.  They couldn’t tolerate seeing me in such recurring severe pain which had necessitated three (3) trips to the local ER in just that past week and countless ER trips in the weeks and months preceding that week.  But they were beginning to understand my unwavering belief in my body such that they knew “something” had to be terribly wrong for me to be this persistent and almost combative with this New Jersey doctor once it was clear he refused to take me seriously.

LISTENING is still a Doctors’ most effective tool

Within a few hours I had been seen by Dr. Chapman and he listened intently to the medical aspects of my past week and month and then sent me directly for an antiquated, but extremely reliable and somewhat invasive, diagnostic test called an “Enteroclysis.”   The concerned manner in which Dr. Chapman listened to me and then followed-up with probing questions, each with a specific purpose toward determining the most appropriate diagnostic test, was comforting in a way which made me feel like I was exactly where I should be, given my recurring Crohn’s Disease problem. While Dr. Chapman’s office had MY same diagnostic tests and extensive medical history on file as Dr. Gucci in New Jersey, my answers to Dr. Chapman’s questions apparently revealed a significant change in my situation.  I was that talking “car transmission” and Dr. Chapman was an auto mechanic taking advantage of every piece of useful  information I was able to contribute.

What is an “Enteroclysis” test?

At the time, it as my understanding Enteroclysis tests were being supplanted by less “labor-intensive” diagnostic tests because these newer tests were more dependent on technology and they delivered similarly accurate results but in a much more cost-effective fashion.  However, my repeated and distinct complaints of pain in different areas of my small bowel sounded to Dr. Chapman as obstructional pain in different “skip areas” (i.e., segments of diseased small bowel sharply set apart from adjacent segments of normal bowel) of my small bowel thus enhancing the unique value of the Enteroclysis test because it was capable of being precise no matter where in the small bowel “loops” the pain originated or in how many different small bowel loops such precision was required.

This was made possible because the test involved the radiologist infusing drops of radiographic contrast through a thin, clear tube which I had slowly “swallowed” [with the help of minimal intravenous “sedation” because I had to be alert to change positions whenever requested by the radiologist so he or she could advance the tube through all loops of my small bowel] which was then carefully passed through my entire small bowel. Whenever I complained of “blockage-type” pain, the tube “swallowing” part was temporarily stopped so the radiologist could infuse the aforementioned contrast to that exact spot so that it could be “photographed” using fluoroscopy. It was extremely uncomfortable for a few HOURS  but the odd thing about Crohn’s Disease is that you will do that which you never thought you could do just to find answers to the current cause of your pain so that it could be treated and abated or extinguished.

Chronic Patients with incurable diseases like Crohn’s

Disease and Ulcerative Colitis must develop, and work at

establishing, mutually respectful relationships with their doctors

Having known me for several years and successfully guiding me through numerous potential catastrophic hospitalizations and surgeries primarily in New York, but also on business trips or vacations to Alabama, California, Massachusetts, Nevada, etc., Dr. Chapman never doubted me when I complained of such extreme symptoms of my Crohn’s Disease. In fact, Dr. Chapman and his staff had taught me as a young Crohn’s Disease patient to be vigilant in respectfully communicating my symptoms.  But, they also taught me to “choose my battles” because not every pain or symptom associated with Crohn’s Disease is treatable and to harbor such expectations is unrealistic and unhealthy. More importantly, persisting to fight such a battle which could not be won would only negatively affect my credibility with other doctors.  Therefore, I suspected this Enteroclysis test would reveal not so much that I had a gastrointestinal problem which required surgery but that Dr. Chapman was trying to ascertain the urgency of such surgery.  As I would come to learn many years later, trying to understand Dr. Chapman’s anticipatory thought process was like trying to fathom how baseball great Willie Mays would purposely swing and miss at pitches he loved to hit in the early innings of games so that pitchers would confidently throw these same “out” pitches in crucial game situations in the latter innings when Mr. Mays would welcome them and NEVER MISS HITTING THEM for typically game-winning hits.

My New York City gastroenterologist

LISTENED and took me seriously; my

New Jersey “Gucci” gastroenterologist DID NOT

Sure enough, when the radiologist who administered the Enteroclysis test was finished, he politely told me not to go anywhere until after he, and then I, had spoken to Dr. Chapman.  I couldn’t hear their phone conversation but judging by the quiet, confident stride of the radiologist while he shared the test results with Dr. Chapman, I sensed their conversation was revealing and definitely “conclusive.”  I wasn’t sure how to interpret these observations but when the radiologist handed me the phone he looked like an expert car mechanic who had just completed putting together that one car in the shop with the insurmountable mechanical issues which no one in the joint thought could ever be repaired to run as it was designed.  The rest I remember like it happened yesterday.

Dr. Chapman asked me what I was doing over the next few days as if he was planning something and before I could answer he said the following, which I am paraphrasing to the best of my recollection: “Eight (8) Small Bowel Obstructions.  You have 8 of them and they must be fixed immediately.  Cancel all your plans and get your affairs in order so you can be operated on within two (2) days.  I will answer all of your questions when I see you in the hospital but I am very busy with other patients at the moment but suffice to say it, I’m astonished at what you’ve had to put up with during each Emergency Room visit.  Hang in there, my staff will set everything up  and we will get you better.  Okay?”

I was speechless.  Dr. Chapman seemed to be sharing his shock at how my pleas for help were IGNORED while also trying to both act professionally and comfort me.  I trusted him emphatically so there was no need for additional discourse but I so badly wanted to ask him how this New Jersey gastroenterologist had REPEATEDLY missed such an obvious and dangerous diagnosis but I got the feeling there were no acceptable answers and this bothered Dr. Chapman terribly.  I didn’t even have time to be angry at the Gucci gastroenterologist who literally made fun of me for needing to run to the ER for every little pain I experienced. However, I never forgot how his complacency, incompetence and/or indifference caused me and my parents so many sleepless nights worrying about me possibly perforating my bowel and waking up in an operating room, or worse. HE did not take me seriously. Instead, I did exactly what Dr. Chapman told me to do and by the next day or so, I was a patient at Mt. Sinai Hospital in New York City being prepped for major (successful) surgery later that day.

Conclusion 

I can totally relate to the quote above and it’s astonishing to me that Crohn’s Disease & Ulcerative Colitis patients must still worry about the barbaric treatment they may encounter in an emergency room of a hospital during a time of both great technological advancements in healthcare and an appreciation of patients as being one of the most under-utilized resources in healthcare.

The latest and greatest diagnostic tests certainly serve an important purpose in diagnosing and treating Inflammatory Bowel Disease  But there is no substitute for a Crohn’s or Ulcerative Colitis patient who takes the time to clearly and accurately articulate what they are feeling for the benefit of a caring physician who understands that LISTENING is still the benchmark for the best patient care. 

Doctors must take Crohn's Disease & Ulcerative Colitis Patients Seriously

Doctors must take Crohn’s Disease & Ulcerative Colitis Patients Seriously