“Patient Centricity” & treating the entire Person

      On Friday, July 5, 2015, I conducted this Video Interview with the WINNERS of the “Doctors 2.0 & You” annual Start-up Contest in Paris, France. “Can Surround,” the 1st place finisher, is a company which focuses on treating the emotional aspects of cancer patients for the purposes of healing and/or improving the effectiveness of the different medical treatments. Having spent a significant time editing this video, at some point I began to think this could be a significant development in global healthcare because it at least illustrates, and may ultimately demonstrate, that medical professionals are recognizing the “mind-body connection” in treating serious diseases such as cancer. In short, I imagine their thinking to be something to the effect of: “There may be significant medical value to treating the entire “person” and not just that “part” of the patient which is affected by the cancer.

     No-one is saying there is a definite “cause & effect” relationship between mind and body but a medical company like “Can Surround” is validating something all people who’ve had the unfortunate experience of battling cancer would agree upon, namely, it is a grueling experience on a variety of fronts which has damaging effects on not only the patient’s physical well-being but also on the patient’s emotional state. Moreover, there are many highly regarded medical studies which conclude, and prestigious medical professionals who believe, that medical treatments for cancer typically work best on the patients with the most positive or healthiest of attitudes. Admittedly, this is a difficult criterion to measure and that may slow the “buy-in” of health insurance companies on these progressive types of treatments offered by companies like “Can Surround” but there appears to be only UPSIDE in stabilizing a cancer patient’s emotional well-being. Therefore, perhaps “Can Surround” will prove this concept and then similar “start-ups” will emerge which treat the emotional components or emotional ramifications of other serious diseases and conditions like Inflammatory Bowel Diseases, Rheumatoid Arthritis, Lupus, Multiple Sclerosis, COPD, Diabetes, etc.?

     Eventually, even health insurance companies will come to realize the cost-savings and likely enhanced effectiveness of various medical treatments associated with a relaxed and optimistic cancer patient but probably only after companies like “Can Surround” replicate such results so many times that even a monkey would concede the connection between mind and body in healing, recuperating and positive outcomes of drug therapies which have less than perfect statistical success rates. But with the propagation of more and more “Patient-Centric” hospitals and treatment facilities, it seems medical professionals are acknowledging that just because a person becomes a patient with a serious disease, they NEVER stop being a “person” whose understandable emotional fragility could be the difference-maker between life and death.

     Between a company like “Can Surround,” focused on a cancer patient’s emotional well-being winning the 2015 “Doctors 2.0 & You” Start-up Contest amongst stiff competition from other medical companies offering products and services which can also “make a difference” in global healthcare and “Patient Centricity” seriously becoming a primary objective of prestigious hospitals and pharmaceutical companies, health insurers might surprise us and beat that monkey in realizing the potentially enormous cost savings and higher-than-usual success rates in treating the entire person and not just that part of the patient which is diseased.

(For more detailed information about the 2015 “Doctors 2.0 & You” Start-up Contest, please read the official Press Release announcing “Can Surround” as the Winner.)

Please share your thoughts and comments about medical treatment encompassing the "Person" and not just the "disease part of the Patient."

Please share your thoughts and comments about medical treatment encompassing the “Person” and not just the “disease part of the Patient.”

Crohn’s & The CDWP

"Patients helping other Crohn's Disease patients is often the best medicine" is why I formed the IBD Charity, "Crohn's Disease Warrior Patrol."

That’s me in the spotlight at “Doctors 2.0 & You” in Paris, France, explaining I formed the IBD Charity “Crohn’s Disease Warrior Patrol” because “Patients helping other Crohn’s patients is often the best medicine.”

     This picture is of me presenting the logic behind my formation of the 501 (c)(3) Charity, “Crohn’s Disease Warrior Patrol” [CDWP], at the recent 2015 “Doctors 2.0 & You” in Paris, France. More specifically, after reading seemingly repetitive healthcare social media (hcsm) posts by frustrated, scared or depressed Crohn’s Disease and Ulcerative Colitis patients, I thought Inflammatory Bowel Disease (IBD) patients should utilize the various hcsm platforms TO HELP EACH OTHER.

     Due to the autoimmune and incurable realities of Crohn’s and Ulcerative Colitis, even the most compassionate and dedicated of healthcare professionals can only do so much. With so many variables contributing to the broad spectrum of an IBD, an almost personalized version of the disease seems to affect different patients. But thanks to the technology-powered hcsm “grassroots movement,” Crohn’s Disease patients with the oddest symptoms or strangest flare-up triggers, for example, can commiserate with similarly peculiar Crohn’s patients from all over the world.

     The CDWP tries to MATCH these patients with one another based on a variety of commonalities so that: “Patients helping other Crohn’s patients, is often the best medicine.” This is primarily conducted at the CDWP website but the CDWP has become a mindset for patients to cling to when all the world of medicine has to offer is a kind doctor, an understanding nurse, biologics, prednisone and painkillers. Indeed, “Patients helping other Crohn’s Disease patients, is often the best medicine.”

     To sign up to be a CDWP “Warrior” who occasionally volunteers to make a phone call, initiates a Skype session with the family of a petrified child who’s not responding to the most potent of medications or visits a stressed-out hospitalized Crohn’s Disease or Ulcerative Colitis patient simply to let him or her know that we are in this together, please fill out the Veteran Patient Signup Form here on the CDWP website.  To simply show camaraderie for your IBD brethren, you should also sign up to be a CDWP “Warrior” or “Veteran Patient” because, after all, it’s the required mindset to shine despite the darkness perpetrated by the potentially pervasive effects of Crohn’s Disease, Ulcerative Colitis and all their complications, peripheral manifestations and drug side effects.

The CDWP goes Global at the recent 2015 "Doctors 2.0 & You" in Paris, France.

The CDWP goes Global at the recent 2015 “Doctors 2.0 & You” in Paris, France.

Crohn’s – “Should I stay or should I go” to the Hospital?

Crohn's Disease - Should I stay at home or should I go to the hospital?

Crohn’s Disease – Should I stay at home or should I go to the hospital?

       It’s been a while since I’ve posted but that’s because I had some opportunities to speak about Crohn’s Disease in some very cool places around the world and then, ironically, I had a very serious Crohn’s flare-up and was hospitalized at Mt. Sinai Hospital in New York City for a week or so.  I am better now so I thought I’d take advantage of this rainy-Sunday to address a VERY important issue which seems to come up every day on the different health care social media platforms.  That is, how do I know I am sick enough to warrant going to the hospital for my Crohn’s Disease or Ulcerative Colitis?  In other words, should I stay at home or should I go to the hospital?  This decision-making process has become so important to Inflammatory Bowel Disease (IBD) patient care and to health insurance coverage for same that many would say having to make this decision in a such a physically or mentally compromised state is simply just another symptom involved with managing Crohn’s Disease.

      This question is predicated on the IBD patient’s vast experience being hospitalized and thus knowing what they’d be in for in the hospital. With IBD, hospitalizations typically involve either no-brainer emergencies like severe intestinal obstructions or severe flare-ups which require intravenous treatments to avoid becoming emergencies.  Accordingly, an experienced patient typically contemplates managing the flare-up as an outpatient, which could however involve waiting around too long for various doctor appointments and the scheduling of diagnostic tests and thus this patient runs the risk of winding up in the hospital anyways, or going directly to the hospital emergency room (after seeing and speaking to their gastroenterologist so he or she is aware that a hospital admission is required) to facilitate being admitted to the hospital.

      But before deciding on which path to take, the experienced Crohn’s Disease or Ulcerative Colitis patient considers what awaits them in the hospital such as the extremely uncomfortable insertion of a Nasogastric (NG) Tube into their intestine through their nose like a human siphon, having to BEG for adequate pain relief, possibly being unnecessarily chastised by some doctors who think the diagnostic test results don’t sync up with the patient’s complaints of pain, defending their decision to be hospitalized while the skeptical, lazy doctors are waiting to be hit over the head with a diagnosis which is rarely “black and white,” dealing with young Residents who think they know it all when the patient knows more about his or her disease than the Residents do, being forced to check their dignity along with their personal belongings into those plastic hospital-issued bags, missing days of work or school or not being able to attend various personal or parental events and feeling like being locked up in some type of medical prison.

        Based on my 30 years with Crohn’s which includes over 200 hospitalizations with 50% of them being emergencies and thus no-brainers, I still go through the above “should I stay or should I go” hospital analysis and when the pain is too much for me to handle with the drugs supplied to me by my Pain Management Physician, I know it is time to get to a hospital.  When I have an intestinal obstruction which won’t abate after I stop eating and live on liquids for a few days, I know I must go to the hospital.  There are several other “indicators” which I rely upon and as I have gotten older I definitely skew towards NOT GOING TO THE HOSPITAL but I also know that as much as I loathe the hospital patient experience, sometimes it could be foolish or even life-threatening to try and “self-treat.”  In that regard, patients must recognize the indicators for THEIR DISEASE which mean they must get to a hospital.

         Let’s face it, there is a difference between being tough and reckless.  But the other day I read the below post in health care social media [it is anonymous to preserve the identities of the people involved] and I learned that no matter how experienced, tough or smart of a patient you are, the potential for Crohn’s Disease, Ulcerative Colitis or other IBDs to quickly cause life threatening situations can make any patient wrong, VERY QUICKLY.  While we fear and despise being hospitalized so much that we are comfortable assuming “some” degree of risk, sometimes, tragically, our decisions to avoid the often barbaric treatment we receive in the hospital can seal our fate, PERMANENTLY.

For those of you who are in so much pain but fear the hospital or want to avoid contacting a doctor about your symptoms, please read on. My friend’s wife died last week from an infection due to her IBD. She had been to the hospital and then ordered a follow-up with her GI doctor in ten days. She only lived 9 of those ten days. Her condition worsened when she got home but she refused to go to the ER. She thought everything would be fine when the doctor saw her [thinking] he would know what to do. The ninth day came and her daughter told her she looked like hell and she was taking her to the hospital. She passed away that evening in an Urgent Care Center. Her infection had spread to her liver, pancreas and kidneys. Her oxygen/blood levels were half of what a normal person would have. Half of her red blood cells had been replaced by white blood cells. Her husband had [also] urged her to let him take her to the hospital 3 times the week before she died and she would not go.

I get it. I hate hospitals too but, I remember the night I went to the ER and dodged death. If I hadn’t, I would not be here. It takes courage to go. It’s admitting you’re weak, but really it’s not. You are pretty brave by making the decision to get emergency treatment. I partly blame my first GI doctor for my trip. I was at his office for a routine checkup and he was pushing in on my stomach as most [GI doctors] do. It was quite painful and I tensed up, yet he kept pushing harder and harder telling me to relax. My colon was very inflamed but he pushed so hard he literally crushed it and it burst. [T]hat night, it hurt so bad I was crying. I didn’t want to go to the hospital. I didn’t want to put anyone out or bother them to drive me. I was in no condition to drive. But if I hadn’t, I would have died from septic shock or poisoning in a short matter of time. I nearly bled out after the surgery, as it was.

So, friends, don’t wait as long as I did or my friend’s wife did. This disease [can be] a serious killer. I know we sometimes wish we were dead and didn’t have to suffer, [I know,] I have. It would be so much simpler, but think about your loved ones and your friends. How would they feel if you left? Take this seriously. Nobody wants to tell your story prematurely.

          My sympathies go out to this brave patient who shared this story and to the woman who passed away and to all the people who loved her but I am thankful he was so frank in his post because it made me reevaluate my decision-making process with respect to “should I stay or should I go” to the hospital.  For example, when I returned from Europe a few weeks ago and knew I was experiencing a serious Crohn’s flare-up, my initial instinct was to simply see my long-time NYC GI doctor and go for various diagnostic tests.  But I doubled-over in pain in his office and he hadn’t seen me do that in many years.  He immediately started writing my Admission Orders and I still protested, asking for the weekend on a high dose of Prednisone to hopefully help me avoid another hospitalization.  He did not agree but because I had to go back home anyways to arrange for Nursing Care for my Mom in my absence, he acquiesced.  But when I got back home and kept feeling like someone was violently twisting my intestines and the pain jolted me from my chest down to my knees, I knew it could only get worse and I did not want my situation to become an emergency.  After being discharged a week later and reading the above Post, I felt LUCKY.

     If you take anything away from this Post, please don’t let the dignity-deafening experiences which occur in a hospital affect your “should I stay or should I go” decision to go to the hospital with Crohn’s Disease, Ulcerative Colitis or any other type of IBD.  Trust your body because it is always better to be safe, than sorry.         

How do you know when you must go to the hospital with an IBD flareup?

How do you know when you must go to the hospital with an IBD flareup?

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.”

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       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.”

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          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.”

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          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.