Aging with Crohn’s Disease

The many looks of Glenn Frey

The many looks of Glenn Frey

      The picture above is from a Fitness Campaign featuring Eagles co-founder Glenn Frey who passed away last week at the tragic young age of 67.  This is UNRELATED to the main topic of this Blog Post but since I presently can’t type without severe pain due to a shoulder injury for which I am undergoing surgery on Monday, January 25, 2016, I wanted to acknowledge it before it was too late. I was a huge Eagles fan and even moved out to California after reading about the charged creative and personal lifestyles they were leading.  I had the privilege of giving Glenn Frey this framed poster after too many people made fun of me for hanging it on the wall in my office. I reached out to a very well-connected Hollywood friend of mine to offer it up to Glenn.  I never thought he’d actually be contacted but a few days later Glenn Frey CALLED ME and said he wanted it.  I guess it captured memories of a certain time in his life which he cherished.  After all he and the Eagles had done for me, it felt good doing something for him. As a songwriter I always thought he and Don Henley formed a uniquely formidable team very much like Paul McCartney and John Lennon.  They complimented each other’s style in a manner which balanced out the song and gave it meaning to so many people in so many ways.  I don’t like reading about how celerity heroes of mine died.  I choose to celebrate and remember how they lived.  Glenn Frey knew how to live and my heartfelt sympathies go to his family, friends and band-mates. 

      In my opinion, the highest quality song ever co-written by Glenn Frey with Don Henley was “Lyin’ Eyes.”  Here’s 3 verses which whenever I hear them make me stop and “absorb” them as if they are referring to someone from my past or maybe even me playing one the song’s roles.  It happens every time and therein lies the greatness of Glenn Frey.  Peace, brother.

She gets up and pours herself a strong one,

And stares out at the stars up in the sky.    

Another night, it’s gonna be a long one.

She draws the shade and hangs her head to cry.

**********************************************

She wonders how it ever got this crazy.

She thinks about a boy she knew in school.

Did she get tired or did she just get lazy?

She’s so far gone she feels just like a fool.

**********************************************

My oh my, you sure know how to arrange things.

You set it up so well, so carefully.

Ain’t it funny how your new life didn’t change things?

You’re still the same old girl you used to be.

Why I haven’t been writing

      I haven’t been able to write much lately because in June, 2015, I injured my right shoulder while swimming.  Swimming had become my stress reducer ever since I had Left Hip Replacement surgery in early 2014 and had become the primary Caregiver for my 80-year-old Mom who has a variety of physical challenges commensurate with her age including a failed Double Knee Replacement which has left her with a great deal of pain and difficulties walking. Despite being “Disabled” from my Crohn’s Disease, I was finally improving my physical conditioning, safely and slowly through swimming, to the point where I felt comfortable challenging myself each day to swim further and longer.  In my youth, more specifically pre-Crohn’s Disease when I was almost 21 (which, incidentally, wasn’t a very good year), relying on my body to go faster and longer was fantastic.  But once I was diagnosed with an incurable autoimmune disease, I inevitably lost all positive momentum toward achieving my fitness goals because something medically serious always seemed to come up which required byzantine solutions like surgery or chemotherapy after brutally long diagnostic journeys.

      That’s exactly what happened with this most recent injury and it got even more bizarre when the painful symptoms in my right shoulder and right biceps and triceps muscles suddenly began occurring in my left shoulder and I wasn’t even using my left shoulder at the time.  Long story short, after many MRIs, CTs and consultations with medical specialists most people don’t know exist, such as a Physiatrist, on Monday, January 25, 2016, I am undergoing arthroscopic surgery on my right shoulder to repair a torn biceps tendon, a torn Rotator Cuff and an AC Joint which is so inflamed it is “bone-on-bone.”      

       My surgeon is incredibly impressive in not just his credentials but also in the way he treats his patients.  I’m very lucky to have survived this 6-month extremely painful diagnostic journey with my sanity in-tact, a specific diagnosis to-boot and with a surgeon repairing me so I can eventually resume doing some of the physical activities I love such as swimming.  That said, it is quite possible I will need this same surgery on my left shoulder after I recuperate but it’s also possible my left shoulder hurts me because it has taken over for the right shoulder and working double-time.   Some patients would look at that long road to recovery and get bummed out, but not me.  With the very real possibility of receiving no diagnosis at all, I’ll take the long road to recovery every time.  I think it’s all how you look at it because if you’ve never had severe pain and been told by well-respected doctors “there’s nothing wrong with you” or “I can’t help you,” you’d never know how desperate and hopeless the sound of those phrases can make you feel.

      Ironically, sitting down and typing seems to trigger the worst shoulder pain.  This is why I’ve had to abandon updating this Blog routinely or commenting on current issues regarding healthcare, Crohn’s Disease and managing chronic disease.  Please trust I will get back to this and to the several other projects I have in the works with my Charity, the Crohn’s Disease Warrior Patrol.  Chief among those projects is the Patient-driven Documentary on Inflammatory Bowel Disease (IBD) for which I’ve been interviewing patients and doctors over the past 2 years.  As I’ve gotten accustomed to my body betraying me, I’ve learned how to minimize its effects just as if a song or location I desired for a film fell through because the licensing rate required was too high.  That’s life with Crohn’s Disease and as I age my body seems to be affected more by its “peripheral effects” than by its more traditional gastrointestinal effects.  In some ways this is more disabling because I wind up seeing other medical specialists and many refuse to treat me as a Crohn’s Disease patient requiring their services and instead they treat me like any other patient.  In those situations, I speak up loudly, but respectfully, because the inflammatory component of Crohn’s Disease could change the diagnosis, treatment and care.

      Living with an autoimmune disease is about always being open to learning about your body and how it reacts under different circumstances.  It’s bothered me I’ve been unable to be productive over the past six (6) months due to the INTENSE pain in my shoulders.  But I am very confident my surgeon will do all that is possible to repair it and physical rehabilitation will require my undivided attention and finally give me something to do which will improve my health. As soon as I can sit down and type without seeing STARS from the pain, I will go back to regularly updating this Blog.  Thank you for your patience.

Please leave any constructive comments.  Thank you.

Please leave any constructive comments. Thank you.

abcs of IBD, Crohn’s & Colitis

IBD = Inflammatory Bowel Disease of which Crohn's Disease and Ulcerative Colitis are the most common.

IBD = Inflammatory Bowel Disease of which Crohn’s Disease and Ulcerative Colitis are the most common.

      In light of it being Inflammatory Bowel Disease (#IBD) Awareness Week, below are some quotes/comments I’ve made over the years and some I’ve come across from friends, patients, IBD parents and IBD doctors, along with some personal commentary which I think provides quick and accurate insight into what it’s like to battle these incurable, autoimmune and chronic diseases. Therefore, if you are newly diagnosed, an existing IBD patient going through a tough time or you have a friend with IBD and want to better understand what he or she goes through, please read this “list” I’ve compiled from my 30 years of living with Severe Crohn’s Disease:

  1. “You been hospitalized so many times, you’re like a pro at this so I won’t even bother visiting you since you’ll be out soon.” OR “I want to visit him in the hospital but he’s back in for that ‘Crohn’s Disease’ and I don’t want to interrupt him running back and forth to and from the bathroom while he’s in such terrifying pain.  Besides, what would I say?” [Scenario 1 – Actually, the more I’m hospitalized, the scarier it gets and the more I crave the normalcy of my friends and home life. So hospital visits from my friends are more important to me now at 53 then they were when I was first hospitalized over 200-times-ago at the age of 21 or so. Scenario 2 – Whenever I have Crohn’s surgery, I tell my friends to always call beforehand and not to surprise me because there’s always a few days after the surgery when I’m “waiting” to go to the bathroom and that 1st sudden urge can be embarrassing when your almost-girlfriend is sitting on your hospital bed trying to make you feel better or other visitors can’t get out of your way fast enough.  Not knowing what to say is a common anxiety of hospital patient visitors but it is based on a misconception of what hospital patients seek from their visitors. We only want our lives to return to some type of normalcy, even if just for the duration of a 15-minute hospital room visit from our buddies. We want to laugh and be kept in the loop.  We also want to have all our “stuff” once we are more mobile inside the hospital room and friends and family are incredibly helpful when they ask me if I need anything. My closest friends usually know when I’m allowed to eat and they surprise me with my favorite foods.  These kinds of visits have created wonderful memories for me despite them taking place because of a difficult experience.] 
  2. “I just saw you out partying Friday night and you were fine; now it’s Sunday and you are too sick to come to my wedding because of this stomach-ache disease?” [In my younger days when I still “partied” and was in denial about my disease and thought “clear liquids” included vodka,” I lost friends over issues like these because Crohn’s Disease patients often don’t look as sick as they are and the symptom of unpredictable and extreme fatigue is really a symptom of Crohn’s Disease and needs to be respected as one.  As for the classification of my disease as some type of serious stomach ache, that was always my fault because I always tried to downplay the fact I had such a serious health problem at the young age of 21.  When you add up all of these reasons and also factor in the lack of accurate awareness about IBD, I’m lucky my friends had so much patience with me. Their selfless acts to help me taught me how to be a better friend to them.] 
  3. “I don’t care how tired you are; you are coming to Family Dinner.” [I would go but I’d fall asleep at the dinner table as if I had drank Benadryl soup.  The unpredictable fatigue from my Crohn’s Disease is a potent symptom.  To this day I’m not sure if certain friends and family truly understand it’s pervasive effect on me. I think it is the IBD symptom which can be suddenly disabling yet it is also the symptom least formally associated with these diseases.]  
  4. I know it hurts but giving you narcotic pain medication will only make it worse because it slows things down which are trying to move through your intestine.”  [It took me a few years to find the specialty of Pain Management, and when I did, I lost respect for the many gastroenterologists I had come across whom refused to treat patient pain (or in some arrogant cases, refused to even acknowledge its severity) when all they had to do was simply refer those patients to Pain Management Physicians so these medical professionals could teach these IBD patients how to best manage and cope with their IBD pain. I’ve always understood the gastroenterologist’s medical rationale favoring the prohibition of using opiates as a pain relief modality for IBD but real life is much different than a medical textbook and even a mundane IBD lifestyle would require this type of immediate self-administered pain relief from time-to-time.  In that regard, I’ve always wondered if these narrow-minded and heartless gastroenterologists would change their almost torturous approach towards treating and acknowledging the severity of IBD pain if their own children were diagnosed with IBD and shared with them their struggles navigating an intimate dinner party, an important business meeting or even a first date while simultaneously trying to cope with a sudden partial or complete intestinal obstruction.]
  5. “Once you have a Colectomy, your Ulcerative Colitis will be cured.” [I’ve interviewed MANY doctors about this topic and the most experienced ones all agree that removal of the inflamed body parts could cure the gastrointestinal aspects of UC but the autoimmune aspects would continue to linger such that these patients would still be susceptible to the autoimmune peripheral manifestations of Ulcerative Colitis. Sadly, some doctors disagree on this seemingly elementary point and I just hope they don’t create false expectations in Ulcerative Colitis patients whom undergo a Colectomy.  That said, these peripheral manifestations may also never occur.]
  6. “Every drug has side effects. Don’t be scared off by the serious side effects of the Biologics because very few people get them.” [In Full Disclosure, I had a terrible time with Humira and developed serious lung problems for which I required aggressive rounds of chemotherapy to stay alive after I developed some type of aggressive lung inflammation which made breathing so difficult I was unable to breathe and talk at the same time.  That said, I KNOW PEOPLE WHO HAVE DONE VERY WELL on Remicade, Humira, Cimzia and Entyvio, some for MANY YEARS, and all with no or insignificant side effects.  “Your mileage will vary,” as they say.]  
  7. “Can I catch Crohn’s Disease from kissing you?” [A very pretty teenager with Crohn’s Disease who I was helping told me that a guy she liked asked her this just before they had their first kiss.  She was mortified but I just told her that the guy simply was uneducated about the disease and she should try to enlighten him and see how things go from there.  I’m not sure how that specific situation ended up but she’s never been asked that question again and has developed into a confident, happy and productive young adult.]
  8. “We can only release you from the hospital AFTER you’ve demonstrated [and we’ve documented] that you’ve advanced your diet from drinking clear liquids to full liquids and then eating soft food and having a normal bowel movement. But your insurance company will not pay for you to stay in the hospital for much longer so …” [This happens all the time at hospitals to the point where you feel bullied to rush your body after a surgery for Crohn’s Disease or Ulcerative Colitis. Don’t ever do that and always trust your body – NO MATTER WHAT.  It will let you know when it is time. Just be polite and respectful when speaking to all medical professionals.] 
  9. “I know your gastroenterologist a long time and I trust her judgement 100% but I don’t see anything wrong with your eyes.  The pain you have is probably due to stress or tension and it will go away on its own.”  This ophthalmologist may be 100% right but it has been my experience that Crohn’s Disease can cause SERIOUS eye problems as a “peripheral manifestation.” To that end, if you are not respectfully vigilant about your reasonable optic concerns, you could wind up regretting not trusting your instincts for the rest of your life.  In this instance, the kind of attentiveness I’m suggesting means seeing two (2) other eye doctors just to make sure a major medical problem is not brewing in that part of your body.  Other common types of “peripheral manifestations” of IBD can happen anywhere in the body and frequently we notice them before they reveal themselves to specialty doctors.  For that reason, IBD patients often must be like Medical Detectives, always on call.  
  10. “You prescribed a certain drug for my Crohn’s Disease and my insurance company is requiring a Prior Authorization Form from you explaining why I need THIS expensive drug instead of any of the many other less expensive alternatives which are also used to treat Crohn’s Disease. But now you want to charge me $50.00 to complete the rote Prior Authorization Form you’ve completed 100 times before for other Crohn’s patients or you won’t do it? Have I not paid you THOUSANDS OF DOLLARS over the past 10 years?  Am I not one of your longstanding Cash Cows?  Why are you ‘nickel and diming’ me when you will certainly earn a great deal of money off of me throughout the course of my disease?” [It’s hard to keep your cool when your doctor, or more usually, his or her drunk-with-power office manager, comes across as an inhumane and heartless soul.   But you must be FIRM because with diseases like Crohn’s and Ulcerative Colitis you may only have 6 1/2 feet of your Small Bowel left, or none at all, but you do have a certain amount of financial leverage so long as, all joking aside, you exercise it RESPECTFULLY.]
  11. “Doctor, why are you asking ME which Biologic drug I should go on for the continued aggressive course of my Crohn’s when I know nothing about them beyond their delivery methods and the related delivery conveniences?   [I see patients routinely posting queries in the different IBD Facebook Groups such as, “Which Biologic should I go on?” as if they are seeking crowdsourced advice about which dress they should wear to their Senior Prom! These POTENT medications are generally similar in how they work but they are individually different drugs which is why one person (ME) might have a delayed anaphylactic reaction to Remicade but can perfectly (at least temporarily) tolerate Humira (until its side effects made it difficult to breathe and talk at the same time).  Additionally, some IBD doctors use a Top-down method regarding the implementation of these various potent drugs whereas others use a Bottom-up approach.  Thus, this “Prom Dress” decision seemingly should be a medical one based on a doctor’s professional medical assessment of your IBD case taking into consideration your age, the severity of your disease, the duration and progression history of your disease, the success or failures of other medications used in treating your disease, etc.  Note: Pediatric IBD doctors are typically more aggressive than others with Biologics (thus, they often engage a Top-down methodology starting with the most potent drug) because kids tolerate these drugs better than adults due to some scientific reality involving their natural resistance to antibodies. But often a reasonable argument can be made about whether or not a teenaged IBD patient falls within a pediatric classification or is sufficiently medically mature to be considered an adult.  I kid with the “Senior Prom” metaphor but this has become an increasingly significant problem given the aggressive television advertising campaigns of certain Biologics.]  
  12. “I have been a patient of yours for 15 years yet you won’t return my phone calls to discuss my recent blood test and I must make a formal office appointment to spend 5 minutes discussing it at the cost of paying $125.00 for an office visit?” [Some doctors are great at their medical specialty because they become very good treating a specific problem and then they move on to another patient.  But doctors who treat IBD must maintain long-term, mutually respectful and trustworthy patient relationships due to the chronic and incurable nature of the disease.  The problem is that some of these doctors don’t realize they aren’t cut out for maintaining relationships with their chronic patients until it’s too late and by then they become those nasty, ego-centric  doctors from whom we IBD patients run. A medical office policy which makes a patient come in and pay for an Office Visit to obtain and discuss routine blood work could be demonstrative of a money-hungry doctor who’s simply lost the zeal for operating this type of chronic patient Medical Practice.  This is just something IBD patients have to continually monitor but policies like this one could be warning signs indicative of the need to find a new doctor.]  
  13. “Doctor ____, I have great respect for you and how well you have treated my Crohn’s Disease for many years but I wonder if it’s not time for me to change to another doctor because this is the 3rd time I’ve been admitted to the hospital in 7 weeks and each time I’m admitted you just give me intravenous steroids and strong pain medications hoping my flare-up will run its course and never return but I still wind up back at the emergency room a few weeks later.  What is your Plan of Treatment for me?  Do you even have one? Are the newest drugs and treatments being considered to more efficaciously treat my case?  Has my Crohn’s Disease gotten so complex that I need a new set of eyes treating me?  Must I go back into New York City to see gastroenterologists who see the most Crohn’s Disease cases and as a result are better prepared to handle a complex case like mine?”  [I was a “consultant” to a Crohn’s Disease patient who went through the above situation.  It broke my heart to see her repeat the same nightmare every few weeks.  I was careful to never give my opinion until it was asked for.  When it was, the resulting questions evolved.  The patient had a LONG relationship with this doctor but her IBD case had become too complex for him to best treat her.  I understood why she had difficulty confronting him about this and that’s why it’s always a good idea to have another person such as a family member, a friend or a paid advocate to intercede on your behalf.  Between the unbearable pain from the flareup, whatever medications she was being given to treat the pain/flare-up and the “Groundhog’s Day” frustrating emotions, she didn’t understand just how mentally and emotionally compromised her judgement had become.  Finally, some of her family members and I carefully pointed out to her how far her case had exceeded the capabilities of her very nice and compassionate doctor who should have referred her to a more active IBD specialist much sooner then when I entered the picture.  This is one of the hardest things IBD patients and IBD doctors must contend with and it’s why I always consider my relationship with IBD doctors as a collaboration.  I need to trust that my convenient suburban IBD doctor will know if and when I must be seen by more sophisticated IBD doctors more up-to-date on the latest research and information regarding available treatments.] 
  14. “I’m trying to clean up my financial life and in doing so it is obvious I need to declare bankruptcy because the amount of my seemingly non-stop medical bills SO outweighs my annual income yet there is no protection in the United States Bankruptcy Code for my situation as I can’t dismiss large medical bills from my longtime gastroenterologist when I will have to see him EVERY MONTH. What am I supposed to do?”   [This is a common rhetorical complaint of longtime patients with incurable, chronic or rare diseases because when medical bills start accumulating in 1986 or so and NEVER STOP even 30 years later, the enormous financial debt begins to have real-life implications. There are numerous reasons for the debt growing so large despite having excellent insurance but if this type of medical bill Bankruptcy were processed like a typical bankruptcy, these patients would have to stiff doctors who’d be treating them in the very near future.  If they did that, they would lose access to these doctors, many of whom could be keeping them alive.  Something has to be changed in this area because people with Rare Diseases or with very expensive chronic, incurable ones like Crohn’s Disease, are being forced to choose between going broke paying for all the medications and surgeries they need to live or foregoing all such medical needs and dying young or living in extraordinary pain. ]
  15. “Doctor, for the past 8 days I have had an NG Tube running from my nose into my stomach, a Foley Catheter running through my penis into my bladder and various intravenous lines for medication, liquids and food. When I get up to walk, I feel like a horse being walked around a stable.  When are some of these contraptions being taken out?  Is it really necessary that I walk around the hospital attached to all these machines?  And why do you need so much blood? Also, why do they wake me up to take sleeping medicine?” [While often very funny out of the necessity to cope with a cacophony of catastrophic circumstances, hospitalizations for Crohn’s Disease and Ulcerative Colitis still seem barbaric at times since the same tools and principals used in the 1950s are still being used today in 2015.  For example, every IBD patient dreads having an NG tube threaded up through their nose and then finessed down into their stomach through that very same nose (and usually done so by an inexperienced Medical Resident who has the magically malleable hands of a 55-year-old lifelong outdoor cement worker) to help alleviate the pressure inside their intestines causing them so much pain but it’s still the only way to quickly help a patient and also prevent an escalation and possible fatal intestinal perforation. Then again, I’ve been in so much pain that I’ve BEGGED to get for an NG Tube.  That’s how sardonically painful Crohn’s Disease can be.  But when you think about it, an NG Tube is no more than a siphon which empties the contents of the stomach into a collecting bottle.  Every-time I realize that, I wonder how no-one has thought of a less barbaric method during the past 50 years when we all now walk around with super computers in our pockets.  We can even call each other in different continents on our computers but when someone comes into an emergency room with an Intestinal Obstruction we still must make that patient endure the same additional extreme discomfort of having a young, still-learning almost-doctor insert a siphon up, through and down their nose into their stomach like they’re an elephant!  IBD is a very serious disease but there’s always humor in it because you meet wonderful people during your challenging journey.  Many lucky IBD patients never see the inside of a hospital and many don’t ever have to take medications which affect their immune systems.  But I hope you now understand how severe and pervasive IBD can truly be and how challenging it is to cope with managing the disease. Please also don’t forget about the extraordinary IBD Caretakers and how friendships and relationships become transformed to a higher place when one person learns about life through the other’s heroic daily battles with IBD and how these people with a chronic and incurable disease nevertheless remain forever inspirational in everything they do.  In any event, somehow, through all the ups and downs, IBD creates extraordinary people and now we just have to be patient because researchers are working hard at creating safer and more efficacious treatments and possibly even a cure for future generations.  At this point, though, I don’t want to dream big so I’d be happy if they started their progress by making the NG Tube obsolete.] 
Please leave any constructive comments.  Thank you.

Please leave any constructive comments. Thank you.

Lack of Problem-Solving in Medicine

Interestingly, I found no usable images under "Medical Patient Problem Solving"

Interestingly, I found no usable images under “Medical Patient Problem Solving”

      Happy holidays to all.  I’ve been on a self-imposed hiatus from regularly contributing to this Blog because in June, 2015, I unexpectedly faced a challenging medical problem and at the time there appeared to be no quick diagnosis in sight.  I knew battling the problem and embarking upon the diagnosis journey was going to be difficult but it has proven to be longer than I expected and the frustration of encountering doctors examining me solipsistically, instead of professionally trying to identify or solve my medical problem, has worn away at my resiliency, compromised my hopeful nature and replaced it with detachment and lassitude.  But with the passage of time comes revelatory perspective and it is that sagacious vantage point which is keeping me sane during this arduous diagnostic ordeal thus far at 6-months and counting.  While writing about my medical problem is physically difficult, I’m hoping my succinct account will be personally therapeutic and also help the many other people going through the exact same situation with un-diagnosed or incorrectly diagnosed medical problems.

What happened to me?

      In short, I fell backwards off the top of a 10-foot ladder in December, 2014, after standing fully erect on its top step and slipping while trying to access a household item for my Mom.  I landed on the cement floor in my garage and the brunt of the fall was absorbed by my upper back, shoulders and neck.  I thought I was certainly going to be paralyzed given my vulnerable falling position and the fright of paraplegia images flashed through my mind making the nanosecond accident seem like it was occurring in slow motion.  Halfway down, or at some time during the real life nightmare, I remember thinking I couldn’t hit the ground fast enough as the realization of being dependent on a wheelchair for the rest of my life began to set in and the quicker I learned my fate the better off I thought I’d be.

      Wheelchair-bound adversities have always represented an important concern of mine because one of the first times I got down and depressed about my many hospitalizations and Crohn’s Disease related surgeries I drove past a public park on a bright sunny day and noticed men my age confined to wheelchairs happily playing with their children.  I imagined some were War Heroes forced to give too much of themselves to fight for my freedoms while others were just unlucky with disease or accidents.  But from what I could see, none were victims and their enjoyment of life was contagious.  I vowed never again to view my Crohn’s Disease “challenges” as anything but and I drove away feeling lucky.  Those images have never left my mind and they soon became the foundation of my positive attitude regarding my Crohn’s Disease because they made me realize how lucky I was just to have an autoimmune disease which did not affect my mobility and independence.  In many ways, these tough men inspired me to become a prolific Inflammatory Bowel Disease (IBD) advocate.

      In any event, after I hit the cement floor and gathered my mental acuity, I slowly checked for blood and when I passed that hurdle I carefully started moving my toes and then my limbs.  Amazingly, all seemed okay but when my Mom ran into the garage and saw my flight pattern, I went to the hospital to get checked out.  The only serious injury was a Compression Fracture in my upper back.  It hurt a great deal and took a long time to heal due to the pro-inflammatory issues inherent in my Crohn’s Disease but considering the reasonable possible outcomes, I considered myself one lucky guy.

      After a few months, the Compression Fracture healed and I resumed exercising which, at the time, was primarily comprised of swimming laps and walking because I was also still rehabilitating from a February, 2014, Left Hip Replacement which took a longer time to heal than the norm due to my body’s aforementioned difficulties battling the potential undoing of all successful surgeries, namely, post-operative inflammation.  Thankfully my body was beginning to cooperate with my mind and after consistently exceeding weekly lofty exercise goals, my swimming sessions became both my salvation from other difficult real life issues on my plate and they made me feel euphoric and even optimistic about my life.  After swimming in a musty indoor pool all winter and spring, I successfully transferred my lap swimming to a beautiful Olympic-sized outdoor pool sometime in late May, 2015.  Then on June 30, 2015, a beautiful early summer day in New Jersey, I carefully slipped into the lap swimming lane of the outdoor pool and began my freestyle swimming session.  I tried to rotate my right arm to initiate my swimming stroke and I suddenly felt a tremendous pain, deep in my right shoulder.  I was so startled by the sharp but deep pain that the lifeguards thought I had a stroke and they dove in to help me get out the water.

Shoulder injury?

      I had been swimming for MONTHS so I wasn’t that freaked out by the shoulder problem once I got back home.  But within 24 hours the pain extended to my right biceps, triceps and down my entire arm.  My local orthopedist sent me for an MRI of my RIGHT shoulder and it was relatively normal save for some understandable bursitis after years of playing singles tennis, competitive softball and pick-up basketball.  This is when I started to become concerned and with my coping mechanism and stress outlet of exercise essentially off-limits, I had to reinvent the manner in which I managed stress but my options were limited and all non-physical.  Anything which made me sweat usually helped me survive and reading books and playing air guitar while listening to my iPod wasn’t exactly easing my anxiety. Then before I could even come to grips with embarking upon another diagnosis journey and consulting with a more experienced orthopedist the following week, I developed this same severe pain in my LEFT shoulder, biceps, triceps and entire arm.  My Pain Management Doctor suggested I see a top orthopedist in New York City and despite his best efforts and genuine dedication to figuring out my problem, he couldn’t.  Then one day he asked, “Have you fallen on your neck recently?”  I explained the December, 2014, backwards fall off the ladder and he suddenly got concerned and referred me to the spine specialist in his Medical Practice.  This is when the diagnosis journey truly left the station.

Cervical Radiculopathy?

      Before commencing with any treatment, this spine specialist made me go for an MRI of my Neck.  Then, during my next visit, he showed me on the MRI how I had a bone spur caught between two (2) particular cervical discs and explained I was likely experiencing resulting nerve compressions which explained my bilateral shoulder, biceps, triceps and arm pain.  He called it a “Cervical Radiculopathy” and indicated it could eventually require surgery but he thought an Epidural Injection would ease the pain for a significant period of time such that with additional timely injections I might be able to stave off surgery for a few years.  While he was quick to correlate all of my pain to the particular cervical discs, he did express bewilderment that despite my specific severe pain I did not exhibit any weakness in my arms.   Still, he strongly suggested an Epidural Injection.  At this point of time in August, 2015, the pain on the top of each shoulder felt like something the weight of a piano was resting on them trying to separate each shoulder.  I also had intermittent severe stabbing, throbbing and burning pains on the outsides of each shoulder.  My biceps often felt so strained and painful, I felt like I was being forced to curl 50 pound dumbbells all day long after I had already worked out with The Incredible Hulk.  My triceps similarly throbbed and burned intermittently; all day, and all night long.  The biceps pain ran down my arms like it was traveling through my veins and at times I felt all of these pains or just some of them.  I could not recognize a pattern nor could I recreate any of the pains.

      In the ensuing months I underwent two (2) unsuccessful Epidural Injections and several more diagnostic tests including an EMG test, CT scan and Myelogram.  The Epidural Injections seemed to dull the pain but only for a few days.  The EMG Test clearly showed I had nerve compressions at the different parts of my arms tested which correlated with the damaged or inflamed cervical discs highlighted in my Neck MRI.  But in the hierarchy of medical importance, the EMG test was lower on the totem pole than my “nonsurgical” MRI and “unimpressive” Myelogram.   The problem, as I understand it now, was that I had some symptoms of a Cervical Radiculopathy, but not all of them, and my Myelogram was ostensibly normal and it is considered the most indicative test for surgical intervention. Additionally, my limited response to the Epidural Injections seemed to disprove ANY nerve compression at all because if I had such a problem, these injections would have made a more significant difference.  As a result, my case was surely not “black or white” and I was stuck somewhere in the middle between needing neck surgery, seeing a neurologist, possibly having serious problems with both shoulders which manifested themselves within days of each other, managing the pain for the rest of my life or completely giving up and eating Double Stuff Oreos for breakfast and White Castle for dinner so that I’d have something to look forward to at bedtime and then in the immortal words of Dave Edmunds and Nick Lowe, “[I’d] have to turn sideways to get thru through the door.” *

The Pressure of Being Your Own Doctor

      As you will see below, I then began seeing a wonderful Physiatrist who’s given me back some hope but it is November 30, 2015, and not only have the above-referenced bilateral shoulder, biceps, triceps and arm pains intensified to the point where lying flat and level in bed is my only pain-free position but I also intermittently lose the dexterity between my thumb and forefinger and at times it feels as if each hand is beginning to get numb.  To that end, I worry if this goes on much longer how debilitating or painful my symptoms will become. Moreover, except for this Physiatrist and the doctors he’s referred me to, no doctor or surgeon, and I have seen MANY, has told me who to see, or what to do, after they took my money and with the warmth of an international assassin told me, “I can’t help you.”  The resulting pressure of having to become my own “Coordinating Physician” also wears heavy on my mind. The amount of medical knowledge I’ve had to learn in order to understand the difficulties in diagnosing my problem is enormous.  Moreover, the severity of my pain has begun to compromise my ability to process all the information shared with me during some very productive office visits.  For this reason, my sister has had to come to a doctor’s appointment with me and I frequently must being my Mom because most of my doctors are in New York City and I worry about leaving her alone at home in New Jersey for very long.

[A “Physiatrist” is a doctor who is a nerve, muscle and bone expert focusing on rehabilitative medicine creating personalized methods of treatment to improve a patient’s quality of life who’s been disabled as a result of disease, condition, disorder or injury.]   

      While I’ve never stopped pursing an answer, I began pushing my friends away because I’m already “the guy in the group who’ll never reach his potential because he’s always playing ‘defense’ due to chronic medical problems” and I’m tired of explaining these incredibly frustrating problems to people I love (i.e., my friends) whom I hope never have to worry about these types of problems.  Also, the weight of the overall decision-making has fallen on me and between managing my pain and taking care of my Mom, I’m operating on fumes.  But, my good friend “perspective” has suddenly popped up and it has emboldened me with the logical awareness that the science of medicine will eventually reveal my medical problem and I needn’t worry for much longer.  Alternatively, my symptoms could worsen such that they reach a diagnostic tipping point during which things will get worse before they finally get better.  Either way, I must remain positive and objective since in many ways I am functioning as my own doctor by coordinating the different medical specialists treating me and/or deciding which steps to take when I hit a dead end with, for example, a rheumatologist or neurologist. If not, the mere psychological aspects of the situation will start to cause me physical pain and I simply can’t bear any more.

The Lack of Problem-Solving in Medicine

      My Zen-like perspective notwithstanding, some medical professionals with anal sphincters as tight as Kim Kardashian’s G-string when she’s 8-months pregnant often add to my overall frustration when they recognize my case as not being “black and white” and then blame it on my incurable, and mercurial, Crohn’s Disease as if it’s a catch-all Medicare Billing Code.  I imagine such doctors take the easy way out and use my Crohn’s Disease as an ocean in which to hide their most challenging cases or they choose not to apply their skills and experience because they are lazy, complacent, too concerned with litigious tendencies of unhappy patients or they view their professional obligations as not including problem-solving.  This last reason keeps me up at night because in EVERY profession consumers pay professionals to do a job which always involves solving some type of problem.  Sometimes that job is easy and sometimes that job is more difficult.  Usually, payment for such professional services is commensurate with this degree of difficulty.  This is why lawyers typically bill by the hour to account for obstinate adversaries who might refuse to reasonably negotiate a fair settlement and it is why tailors carefully review the capabilities of a garment before agreeing to make alterations to it at a specific mutually agreed upon price.  Particulars aside, in each instance, professionals are paid to get the job done and not to look at the legal case or alterable garment and then opine AFTER BEING PAID, “Sorry, what you are asking to be done does not fall into my expertise [or specific medical specialty].”

      Notwithstanding the aforementioned abridged, but accurate, explanation of capitalism, some doctors will take your money and review your medical case from ONLY their ego-centric and medical specialty viewpoint and then tell you they can’t help you if your case does not overlap with their medical specialty.  By ignoring the patient’s problem-specific perspective, these types of doctors are proliferating this woefully lacking problem-solving deficiency in medicine. Granted, if my case doesn’t rise to the level of surgical intervention, I will understand but I will expect the surgeon to explain why, and to refer me to an area of medicine which can help me, either in a diagnosis or with some of the symptoms.  In my humble opinion, if a surgeon decided as such and then explained the decision to me and suggested helpful routes I could take to alleviate or at least minimize the effects of my current problem, I’d consider that a complete transaction.  But, shockingly, that has not been my experience.

The Problem-Solver – A Physiatrist

      After realizing I had already begun frequenting White Castle and eating Double Stuff Oreos for breakfast, I sought out the “Physiatrist” who had treated me in 2000 when I found myself in a similar un-diagnosable situation even though he doesn’t take any insurance and the costs will likely cause financial Crohn’s Disease to strike my Mom.   By way of quick background with this wonderful doctor, I had hurt my Back playing basketball in 1999 and when I fell on the concrete and tried to get up I could tell I had an injury I’d never had before in 20 years of playing hoops.  The pain was so severe I had to see a Pain Management Doctor and I was on a very high dose of narcotics just so I could take a shower.  But my MRI was NORMAL.   Still, I knew something very serious was wrong with me because my body would not be in so much pain.  A concerned friend contacted me and before too long I was speaking with the Physiatrist.  In short, he believed me and had me undergo a “discogram” which was made obsolete by the MRI technology but it still was reliably predictive of disc problems.  The theory behind the discogram was simple:  Saline was injected into the discs in my Back under fluoroscopy. A healthy disc would have no problem absorbing the saline whereas a ruptured disc would leak saline like a sieve and that leaking would be captured on radiographic pictures.  In my case, it turned out the disc at the L5-S1 level on my spine was ruptured.  It was apparently ripped from the inside-out and thus did not show up on the MRI.  Every surgeon then wanted to operate on me and perform spine fusion surgery whereas no one would help me when I presented with a normal MRI.  (My insurance company at the time would not pay for ANYTHING after the NORMAL MRI so I had to fight them.  I detailed my victory and successful surgery in my first book, “Confessions of a Professional Hospital Patient.”)

This Thanksgiving, I’m thankful for Physiatrists

      I’m still seeking answers with my Physiatrist but I know he’s trying to solve my problem.  I can’t say that about many of the other doctors I have seen.  If my problem did not reveal itself in their specialty, all they did was tell me they couldn’t help me.  That’s not the case with the Physiatrist.  Apparently he’s noticed a rupture in one of my cervical discs but before focusing on my Neck he decided to check my shoulders since they hurt a great deal.  We both figured the MRIs would come back normal but BOTH revealed Rotator Cuff TEARS, one of which is apparently quite serious.  While I feel I am finally in the right hands, this Rotator Cuff revelation was probably the nadir of my lassitude because I can move my arms in ANY DIRECTION WITHOUT PAIN and someone with such a Rotator Cuff Tear should not be able to do so.  Additionally, the MRI of my right shoulder in July did not show this Rotator Cuff Tear and I have not exercised since.  The Physiatrist LISTENED TO ME and just before the holiday I had an MRI of my right “Brachial Plexus” hoping to get a clearer picture of the nerves coming from my neck and branching out into my shoulders, biceps, triceps and arms.

      I’m still struggling but I now have Perspective, Hope and a Physiatrist.   Knowing my doctor is as frustrated as I am with my medical problem is strangely comforting for I know this doctor will not leave me hanging.  He will just give financial Crohn’s Disease to my Mom.

*Lyrics from the song “The Knife and Fork” performed by the band, Rockpile on its only released album, “Seconds of Pleasure” featuring Dave Edmunds and Nick Lowe.

Please leave any constructive comments.  Thank you.

Please leave any constructive comments. Thank you.

Effective September 15, 2015 I am on Hiatus

Thank you for reading my Blog. I must take a hiatus due to health reasons but I will be back. In the meantime, please check out my Twitter Account @HospitalPatient or my book, "Confessions of a Professional Hospital Patient."

Thank you for reading my Blog. I must take a hiatus due to health reasons but I will be back. In the meantime, please check out my Twitter account @HospitalPatient or my book, “Confessions of a Professional Hospital Patient.”

Dear Loyal Readers:

I hope this Blog Entry finds you well.  I apologize in advance, but I must be brief. Due to a complicated medical problem involving a Bone Spur in my Neck which is causing a variety of painful symptoms, I must take a break from typing for a while.  If I require surgery, I might have to take a little more time off.

I will certainly share the most interesting parts of my medical  “journey” as soon as I can. In the meantime, I have been tweeting @HospitalPatient because it’s only 140 characters and I can dictate it.  There’s something about the typing position which aggravates my current Neck situation and causes SEVERE PAIN down both arms and at the tip of BOTH shoulders.  My Pain Management Doctor believes I have 2 separate problems: 1. A Bone Spur in my Neck compressing nerves in 2 different cervical discs on different sides of my Neck and 2. Severely Inflamed “AC Joints” in BOTH SHOULDERS causing the “shoulder separation feeling” pain.

Given the “coincidence” of both shoulders having this “AC Joint” problem at the same time, it seems this problem likely is the result of my December, 2014 fall off a 10-foot ladder.  I fell backwards while standing on the top of the ladder trying to get something from a shelf in my garage.  I lost my balance and landed on the upper portion of my back.  As I was falling, I swear I thought I was going to be paralyzed.  That’s how high the fall was but I only fractured a bone in my back.  I am truly LUCKY and THANKFUL. Well, it seems I also damaged my Neck.   (But I still consider myself lucky and thankful because it could have been a lot worse.)  I don’t understand why it has taken so long to cause all this pain but such unique manifestations of injuries or symptoms have been the story of my life ever since I was diagnosed with Crohn’s Disease 30 years ago.

I am also the primary Caretaker for my Mom and that has become much more intense.  Accordingly, I must take care of my health and my Mom and take a break.  Thank you for reading my Blog and for posting comments, good or bad.   If you are interested in reading more of my healthcare writing, my book “Confessions of a Professional Hospital Patient” is still available in all media formats at Amazon and Barnes and Noble.  I have been told it is very funny and very informative.

Please leave your comment here, good or bad.  I only ask that it be constructive.  Thank you.

Please leave your comment here, good or bad. I only ask that it be constructive. Thank you.

 

 

 

 

Manipulation of Patients via FDA-approved Drug Commercials

The FDA recently made drug company Duchesnay, USA remove this Celebrity Endorsement by Kim Kardashian from her Instagram account for its morning sickness drug Diclegis because it did not list all the possible side effects and thus was "misleading."

The FDA recently made drug company Duchesnay, USA remove this Celebrity Endorsement by Kim Kardashian from her Instagram account for its morning sickness drug Diclegis because it did not list all the possible side effects and thus was “misleading.”

A Drug Commercial Parody exposes an FDA policy as antiquated

“Saturday Night Live” Season 33, Episode 5, February 23, 2008 – “Annuale”

      A 2-minute “Saturday Night Live” (SNL) parody commercial for the fictitious drug, Annuale, hysterically captures the absurdity of the U.S Food and Drug Administration’s (FDA’s) archaic rules regarding the advertisement or endorsement of prescription or over-the-counter pharmaceutical drugs. PLEASE do yourself a favor and click-thru to watch this BRILLANT video which demonstrates in ways I cannot adequately explain with mere words just how far out-of-touch the FDA has become with the way in which our lifestyles are affected by the advertisement of drugs on television or via social media.  In short, this video initially aired during SNL Season 33, Episode 5 on February 23, 2008.  It features 4 women (Tina Fey, Amy Poehler, Casey Wilson and Kristen Wig) fed up with everything having to do with their monthly Menstruation Periods until they discover “Annuale,” a birth control pill which limits females to having a single or “Annual” Menstruation Period.  The “catch” and hilarious “twist” in this drug commercial parody is that this “annual” Menstruation “convenience” comes with a few dangerous side effects such as violent rage, the development of a second vagina and the growth of a leathery tail. The complete voice-over side effect and/or health risk disclaimers are as follows:

“Annuale’s not for everyone. (as the [disclaimer] text scrolls over color footage of the four women screaming [and acting out the various dangerous and bizarre behaviors triggered by taking this fictitious drug]) Do not take if you are using MAIO Inhibitors or if your occupation requires you to operate heavy machinery. Do not take Annuale if you ever plan to become pregnant, as it may turn your baby into a firemonster. In the days around your period, you may develop a leathery tail. Annuale may cause you to develop a second vagina. Notify authorities in your town when your period is imminent as they may want to incarcerate you pre-emptively like a wolfman.”

http://snltranscripts.jt.org/

People are Smarter than Advertisers

think they are 

      Poking fun at something or someone often reveals truths about it or them, which are difficult to put into words.  For example, even when the “threatened” drug side effects and health risk disclaimers are so extreme and vividly demonstrated in a drug commercial, as they are in this SNL parody drug commercial, people still focus on the possible improvement in their lifestyle from the drug without reasonably contemplating any possible deleterious side effects or health risks.  That’s one of the two (2) major points I took away from the SNL parody.  Therefore, a reasonable argument could be made that the accuracy of the drug’s efficacy should be the FDA’s emphasis instead of its close monitoring of the manufacturer requiring the advertiser to include every possible side effect or health risk disclaimer, most of which are created by attorneys who wear belts, suspenders and look in the mirror every 5 minutes to make sure they are still wearing their pants!  Additionally, people inherently understand there is “no free lunch” in all aspects of life and that includes some type of undesired side effect or health risk from a drug which addresses and resolves their specific medical problem.  To that end, people in this “Google” era who often watch television, do so on two (2) screens, with the smaller one at the ready for quick internet research, and are thus very resourceful such that they know to research for a drug’s possible side effects and/or health risks.  And they don’t want their social media platform’s 140-characters to be dominated by unnecessary disclaimers written more to protect drug manufacturer’s from frivolous lawsuits than to inform them of a drug’s dangerous side effects or health risks in the interests of public safety.

The FDA is stuck on “Form” over “Substance”; People need only Substance

      Finally, I think it is fair to say that people tend to ignore verbal or written “scrolled-down” disclaimers which stereo-typically appear toward the end of visual drug commercials and reveal every conceivable side effect and health risk of the drug in favor of continued watching of their visualization of a possible enhanced lifestyle achieved with this drug.  This is where the second of the two (2) takeaway points of this SNL drug commercial parody comes into play.  We now live in a world of “substance” in which people can easily navigate to sources of information of their choice and anything “published” as mandated by “form” is not only antiquated, superfluous and unnecessary but any information included in a drug commercial for “form” reasons, such as verbal or written scrolled-down disclaimers, is most likely going to be ignored by viewers.

      More importantly, given that the FDA presently still places great emphasis on “form” in policing its regimented and outdated rules regarding drug TV commercials, people are either being denied access to commercials which would interest them if only the manufacturer could afford producing a commercial sophisticated enough to include all of the “belt and suspenders” disclaimers required by the FDA or people are being inundated by commercials touting the same drugs from the same manufacturers who happen to be in an advantageous financial position that they can comply with the rigorous but unnecessary drug commercial requirements mandated by the FDA.

The FDA vs. Kim Kardashian & her morning sickness

      As recently as early August, 2015, the FDA again revealed its antiquated focus on “form” over “substance” with respect to the advertisement and/or endorsement of prescription or over-the-counter pharmaceutical drugs when it singled out Reality Television Star/Brand and Businesswoman Extraordinaire Kim Kardashian for her paid promotion of the morning sickness drug, Diclegis, via her popular Instagram social media account.  More specifically, the FDA actually sent a “Warning Letter” to the drug’s manufacturer, Duchesnay, after Ms. Kardashian’s social media endorsement of the drug for her own morning sickness and simply concluded Ms. Kardashian’s statements didn’t say enough about the drug’s potential side-effects and are thus misleading.  In responding to the FDA, Duchesnay respectfully insisted that these side effects are easily obtainable online through numerous websites and that Ms. Kardashian had found the drug through her own doctor to treat her own morning sickness before being approached for this endorsement deal.  But Ms. Kardashian subsequently deleted the Instagram post and in order to comply with the Warning Letter, the drug manufacturer must “correct” Ms. Kardashian’s “misleading” statement to that same Instagram audience.  It is unclear if the drug company intends to comply with this FDA Warning Letter requirement or how they intend to do so, were they to comply.

      If Ms. Kardashian had actually used the morning sickness drug, Diclegis, and presented her own opinion of the drug on her Instagram social media account without being paid or “coached” by the drug’s manufacturer, then the 1st Amendment would have protected her against any repercussions and her actions would not have fallen under the purview of any federal agency.  Similarly, since the drug company would then have no knowledge of Ms. Kardashian’s Instagram post until it was posted by her, the drug company also would face no repercussions.  But once she was paid to make such statements, the drug’s manufacturer has to make sure the information is accurate and the “advertisement” is in compliance with all pertinent FDA rules.  But in the world of social media and ever-evolving mediums, some of which only permit 140-characters, it is unrealistic to list each and every disclaimer, many of which are only listed to protect the rear end of the manufacturer from over-reaching law suits filed by disgruntled customers unhappy with the results or somehow damaged by the drug through no foreseeable liability of the drug company.  Accordingly, some disclaimers are appropriate in terms of warning the general public about reasonably dangerous realistic side effects of the drug but too many disclaimers are created by attorneys donning both belt and suspenders while protecting only the manufacturer.

The Manipulative FDA-approved Drug Commercial – “Humira”

      An example of a drug apparently properly advertised on television in accordance with FDA rules, is “Adalimumab,” better known by its brand name of “Humira.”   In full disclosure, you should know that I’ve taken this drug for treatment of my Severe Crohn’s Disease.  While the drug worked very well and exactly as advertised for a significant period of time (i.e., approximately 3-4 years), I eventually started coming down with unusually severe respiratory conditions which landed me in the hospital.  I started doing some “Google” research on the drug and I discovered that not only were serious (and possibly fatal) respiratory infections a fairly frequent occurrence among some other Humira users but the FDA issued several “Black Box Warnings” to the manufacturer of Humira, Abbott Laboratories, AFTER it was released to the general public. “Black Box Warnings” are essentially drug packaging requirements the FDA requires a pharmaceutical company to include as a bold warning on the packaging and on the patient instruction sheet of a drug if serious or life-threatening risks are associated with the drug.  They are the FDA’s most severe warnings a drug can carry before it is pulled from the shelves.

            Not only were there Black Box Warnings issued to Abbott Laboratories for the possibility of dangerous fungal respiratory conditions such as “histoplasmosis” but there were also Black Box Warnings issued to Abbott for increased risk of cancers in children and for the development of Legionella and Listeria (the Humira drug is now owned and operated by a “spin-off” company of Abbott called “AbbVie”).  There were also written communications to the general public about the serious risks of Humira and the development of the rare T-cell lymphoma, HSTCL.   At that time, a summary of all Warnings of concern to patients taking Humira was also included in a RARE “YouTube” announcement by two (2) prominent executives at the FDA.  This is no longer available on the Web but I have seen it.  I imagine the rationale behind using such a unique and new medium is that autoimmune diseases such as Crohn’s Disease typically affect people in the age range consistent with that of the YouTube user’s age demographic.  Interestingly, when I went to AbbVie’s website in preparation for writing this Post and typed “Black Box Warnings” into the Search Box, it came back with NO RESULTS.  Yet, a doctor was able to devise a very specific time-line for the several Humira-issued Black Box Warnings.  While somewhat difficult to cut through the medical jargon, the FDA’s website supposedly has a list of each Warning it has issued but in my cursory review I was only able to locate two (2) such FDA notices.  But upon closer scrutiny or written request, I am confident each FDA issued Black Box Warning can be obtained.

         The television commercial currently running regarding Humira seemingly within every dinnertime Network News Program and during every major sporting event is embedded below.

      It is approximately 1 minute and 14 seconds in length and the VERBAL side effect and health issue disclaimers begin to run at the 35 second mark and end at the 1 minute and 6 second mark.  Thus, the efficacy of Humira is on screen for approximately 43 seconds while the disclaimers are VERBALLY spoken for approximately 31 seconds.  The potential problem with this apportionment of time is that with this particular drug, especially considering how serious the potential side effects and/or health issues can be, it would seem that the 43/31 Visual to Verbal disclaimer content should be flipped.  Moreover, to more accurately represent the seriousness of the potential side effects, wouldn’t it seem to be a fairer representation of the Humira “experience” if the 31 seconds devoted to the side effect and health issue disclaimers included some VISUAL content equal in font prominence and size as the “Remission is Possible” selling-point?

      Moreover, if the FDA is true to its word about prohibiting “misleading” commercials or endorsements like that of Kim Kardashian’s above, which merely didn’t mention side effects or health issues when EVERYONE knows that EVERY DRUG comes with the potential for SOMETHING, the 31 seconds of Humira side effect and health issue disclaimers should SHOW a Humira patient FREAKED OUT because he or she has just been told they have a potentially lethal fungal lung infection, or they have a strange cancer for their age or lifestyle or that they must begin chemotherapy to treat a severe respiratory condition side effect of Humira, AS I WAS REQUIRED TO DO IN ORDER TO BE ABLE TO BREATHE & TALK AT THE SAME TIME.  After all, the beginning of the commercial SHOWS the viewer a “patient” struggling with the effects of Crohn’s Disease so why can’t the commercial do the same regarding a patient struggling with the potentially serious side effects of the drug being marketed?  The answer is because the opening shots of the woman struggling with Crohn’s Disease lures in similar patients and thus creates a demand for the drug, Humira.  Any visualization of LETHAL or LIFE-ALTERING Humira side effects would NOT HELP SALES. Accordingly, I respectfully contend that the Humira commercial, through no fault of Abbott or AbbVie since they are simply following FDA rules, is MISLEADING.

Conclusion: FDA Rules re: Drug Commercials permit Drug Companies to Legally Manipulate Patients

      The Humira television commercial is in sync with the FDA’s preposterous rules regarding the “form” of drug television commercials and the FDA doesn’t care about the “substance” of these commercials, for if it did, the Humira commercial would show a patient struggling with the side effects of Humira for the same amount of time the commercial portrays the patient struggling with Crohn’s Disease (and thus setting the stage for the miraculous selling points of Humira).  Furthermore, if the FDA truly played its role of being **responsible for protecting the public health by assuring the safety, efficacy and security of human …. Drugs …,” the 31 seconds of VERBAL disclaimers would have more substance to them so that the viewer can’t simply tune them out and focus on what they’ve already seen as the potential for them if they took Humira.  Unfortunately, the result is that many Crohn’s Disease patients then go to see their doctors and request to be put on Humira.  Some patients struggling so badly with Severe Crohn’s Disease who don’t respond to any other treatments are certainly candidates for Humira.  But Crohn’s Disease patients who have cases which are not Severe and which have yet to prove they won’t respond to other treatments are not yet candidates for Humira.  This could create a SERIOUS PROBLEM if their doctors cave into the patient pressure and Humira then becomes a drug of 1st resort when it should be a drug of last resort (with the exception of some pediatric Crohn’s Disease and Ulcerative Colitis cases).

      I don’t blame Abbott or AbbVie for what happens in gastroenterologists’ offices because they are simply taking advantage of the FDA’s rules and doing all they can within the law to market their product.  My problem is with the FDA and their archaic rules regarding drug media commercials which CLEARLY favor FORM over SUBSTANCE.  The FDA thinks it is protecting patients by making sure EVERY conceivable disclaimer is included in a commercial but in practice they should recognize how companies like Abbott and AbbVie legally manipulate these rules and create a potentially DANGEROUS situation for patients whom only care about what they SEE and not what they HEAR.  In that regard, I BEG THE FDA TO REVISE THESE RULES so that patients can no longer be legally manipulated by drug companies.

**From FDA Website

Please leave a comment if you have any thoughts about the FDA's drug commercial policy and/or the actions it took in the recent case involving Kim Kardashian's seemingly well-intended Instagram Endorsement of the morning sickness drug, Diclegis.  Please also feel free to comment about the very funny parody drug commercial by Saturday Night Live for the fictitious drug, Annuale.

Please leave a comment if you have any thoughts about the FDA’s drug commercial policy and/or the actions it took in the recent case involving Kim Kardashian’s seemingly well-intended Instagram Endorsement of the morning sickness drug, Diclegis. Please also feel free to comment about the very funny parody drug commercial by Saturday Night Live for the fictitious drug, Annuale.

Patient Centricity Pioneers

The group of 12 "patient leaders" brought together by a global healthcare company in July, 2015 at a beautiful rustic setting outside of Washington, DC  to contribute our respective experiences toward the establishment of a working definition of a "Patient Centricity" healthcare standard.

The group of 12 “patient leaders” brought together by a global healthcare company in July, 2015 at a beautiful rustic setting outside of Washington, DC to contribute our respective experiences toward the establishment of a working definition of a “Patient Centricity” healthcare standard.

      This title of this picture is misleading because it only depicts the twelve (12) patients, patient advocates, activists, caretakers, health care professionals, rare disease advocates, health advocates and community leaders (collectively, “patient leaders”) who recently took part in a ground-breaking meeting just outside of Washington, DC organized by a large, global healthcare organization aimed at defining “Patient Centricity” for the purposes of utilizing it as a future new standard by which patient care is delivered, patient products and services are designed and patient concerns are listened to, and acted upon, in creating and implementing their business objectives.

      The reality is that these twelve (12) people, of which I am one (1), represent many more around the world who are also “Pioneers” of “Patient Centricity,” three (3) of whom, for example, I can personally attest have been working at this for several years by transforming patients into legitimate “stakeholders” at their respective world-wide renowned Healthcare Conferences and Events.  More specifically, Denise Silber via “Doctors 2.0 & You” held annually in Paris, France (which now has a year-long presence in social media), Dr. Larry Chu via “Stanford Medicine X” held at various times during the year at Stanford University (which also has a year-long presence in social media) and Regina Holliday, an artist healthcare activist who began to include patients and their stories in The Walking Gallery of Healthcare and most recently at her Conference, #Cinderblocks2: The Partnership with Patients.

What is “Patient Centricity?”

      Up until now, “Patient Centricity” has been considered by many health organizations to consist simply of designing a healthcare service or solution around the patient.  Thus, when hospitals or medical practices advertise themselves as being “patient-centric,” they are trying to convey that they “stand out” because without exception their doctors, nurses and surgeons actually listen to patients and meaningfully consider their concerns and preferences before doing what they think is right to attain the best or desired patient outcome.  But I’ve always found that “message” to be somewhat disingenuous because all along that’s what I thought was occurring whenever I went to consult with a well-respected health care professional and thus I’ve wondered why it is suddenly being emphasized?  This begs the question, what was their organizational policy before it was “patient-centric?”

      Perhaps prior to the above-pictured innovative recent think-tank of patient leaders, I was a bit cynical in this regard because I have been hospitalized for Severe Crohn’s Disease at some of the world’s most prestigious institutions, each of which also boasted a “patient-centric” atmosphere.  But my experience at the most prominent one was anything but that as it was exclusively reliant on the whims of the doctor or surgeon who was treating me there.  This does not make that institution less world-renown but in my case it made two (2) particular health care professionals disgraceful human beings who cared more about their “statistics” and internal institutional healthcare analytics than they did about my personalized post-operative reaction or my repeated complaints of inadequate pain relief.  In that case, “Patient Centricity” was discarded for “Don’t listen to the Patient, I know what is best for him Centricity.”  They made me feel like I was ostracized from one of the world’s greatest hospitals all because there were complications with my surgery, which, incidentally, was my 20th or 21st abdominal surgery, so wouldn’t you think complications would surely be expected? [Rhetorical]

      Thankfully because of the relentless advocacy of the people like the 12 pictured above, their brethren in Europe whom are also a part of this particular innovative Patient Centricity initiative (see below) and through the on-going work of patient-centric leaders like Denise Silber, Dr. Larry Chu and Regina Holliday, the definition of “Patient Centricity” has become more meaningful to healthcare organizations because it may well soon become one of the most important standards in measuring the quality of both patient care and of the “patient experience” and thus substantially determine a facility’s or company’s ability to attract patients and valuable industry accreditations.  As a result, a comprehensive and universal definition of “Patient Centricity” is sorely needed and it is for this reason the 12 of us were selected to brainstorm with one another in a lovely historically preserved “Country House” just outside of Washington, DC in late July, 2015.

Why was this meeting different & thus more productive?

      Whenever every Healthcare Management Consultant makes a presentation, the following phrase is either included on a PowerPoint slide or it is uttered as part of their slick shtick:  Patients are at the core of tomorrow’s health system.  From an experienced patient perspective, that’s like saying whomever wins the 2016 United States Presidential election will have a significant impact on the world, Donald Trump is not a “thoughtful politician” or Showtime’s “Ray Donovan” character is a bad-ass.  Each of these statements evoke the same “no-brainer” revelation in the listener and require zero risk in the speaker going out on such a strong limb.  Therefore, proclaiming patients as being vital to tomorrow’s health system is both an obvious and safe prediction to make and rely upon.

      By comparison, this July, 2015 Washington, DC gathering of what this large, global healthcare organization considered the top United States “patient leaders” was unique because they bypassed the Management Consultancy-speak and went directly to the source for answers to questions which they hoped would form a working definition of “Patient Centricity.” They honestly did not know what the final result would be or if this corporate initiative would even be productive.  Witnessing it as a former attorney, it was like watching a litigator ask his own witness questions to which the attorney did not know the answers, a cardinal sin for a litigator looking to WIN.  But this global healthcare company wasn’t looking to “WIN;” rather, they were looking to LEARN.  Accordingly, they put faith in experienced patient leaders, took away all safety nets and in the process revealed their genuine interest in learning from patients what this soon-to-be very important touchstone term should mean.

      The name of the healthcare company which funded this Patient Centricity initiative is irrelevant since this is an experimental program and until these meetings create tangible programs, I think what is of paramount importance is that these meetings are actually taking place and trusted input is being sought of 10-12 patient leaders in the United States and 10-12 patient leaders in Europe.  I imagine, and hope, there will be many more meetings to apply the standard of Patient Centricity to this healthcare company’s present and future products and services but the basic “agenda” for this first meeting was simple: Create a definition of “Patient Centricity.”  Instead of taking suggestions from this group of erudite patients, caretakers, advocates and healthcare professionals, after casually getting to know one another at a pleasant informal dinner, the next morning we were separated into two (2) groups of 5 or 6 and then were asked to converse and list the attributes which described our best and worst experiences interacting with our respective health care systems.

      I had been through an exercise like this before so I knew what to expect in terms of the “process” and how the positive attributes were going to be used to ultimately craft a definition of “Patient Centricity,” then it would be compared to the results of the other group so that the entire group could then take the best from both groups to finalize a working definition of “Patient Centricity.”  While I have witnessed this type of approach attempted before, I have never seen it executed this flawlessly as the intent and genuine interests of the 12 patient leaders were perfectly aligned with the objectives of this progressive global healthcare company.  I was also amazed at how much I learned by listening to the stories of the other patient leaders as some found the best and most important attributes of their doctor-patient or hospital “transactions” to be outcome-oriented, compassion, explanation of treatment options, selection of words by the healthcare professionals, providing on-going education about their disease, inclusion of the patient’s spouse or family in decision-making, respect, follow-up care, utilization of plain English on medication labels, etc.

      Some patient leaders emphasized the importance of making patients equal “stakeholders” in the process while others wanted to include access and affordability to medication as part of the definition, particularly from the perspective of the Payors and the Pharmaceutical companies.  I tried to figure out if preferred positive attributes were somehow tied to particular diseases but each patient leader seemed to have such diverse experiences that their respective inputs transformed any predicable attributes logically associated with their diseases.  I also realized that several of the suggested attributes were more aspirational than realistic but I learned from my 11 other colleagues that inclusion of such expectations is important at this critical definition formation stage.  Most importantly, by the end of the meeting, my skepticism coming into the meeting about the significance of the establishment of a Patient Centricity standard was gone and I now look back at my “Don’t listen to the Patient, I know what is best for him Centricity” story and can laugh when prior to this meeting it’s never been a memory I wished to recall.

What is the definition of “Patient Centricity”?

       The actual wording of the definition we came up with as a group is not for me to disclose on my Blog since it is technically the property of the company who brought us all together.  Suffice it to say, once a comprehensive Patient Centricity standard is adopted by all Institutions, Providers, Participants and Payors of healthcare then patients with complex diseases or complex forms of diseases (like me) needn’t ever worry about having their seemingly abnormal concerns discarded simply because they deviate from the norm or they prove to be a much more difficult patient than the “textbook” case.   But I think you can gather from this Blog Post that I was incredibly impressed with each of the 11 other patient leaders and how, in their own ways, they fit their ideas into the conversation to ensure they counted.  There was also a great deal of mutual respect in each group so as much as we all had so much to offer, we also knew our experiences were no more or less important than those of the other patient leaders and therefore we worked very well together.

      Whether it was because we were able to “frame” the issues so succinctly or because these company executives had already been through this exercise with our patient leader colleagues in Europe, I have never seen executives so “engaged” on a number of levels (i.e., listening, speaking, note-taking, organizing, etc.) while still maintaining such a welcoming and casual atmosphere.  By the mere fact that we were listened to so intently, I am now so enthusiastic about the future and how patients will be universally treated.  It may take time for Patient Centricity to become “the” standard in healthcare but when smart progressive companies are investing in devising a thorough definition of it, something tells me I have been included in a cutting-edge and industry-leading initiative and for that, I feel privileged.     Stay tuned.

Please feel free to comment on a Patient Centricity healthcare standard.

Please feel free to comment on a Patient Centricity healthcare standard.

The Walking Gallery of Healthcare

Walking Gallery of Healthcare Jacket 387

My ridiculous pose is a byproduct of being exhausted as I had to show the front part of the Jacket and it was late at night. :)

My ridiculous pose is a byproduct of being exhausted as I had to show the front part of the Jacket and it was late at night. :)

July 7, 2015

      I am INCREDIBLY HONORED to be officially included in the Walking Gallery of Healthcare (which has representatives on five continents) by my receipt of Jacket 387, in Year 4 of its existence (as of June, 2015, there were 392 unique Jackets).  The artist and healthcare advocate behind the Walking Gallery is the extraordinary Regina Holliday.  I can’t explain her innovative concept better than her so below are some quotes of hers which I have lifted from her Medical Advocacy Blog:

“This is the fourth year of the Walking Gallery of Healthcare.  We now number 357 members walking around the world with patient story paintings on our backs.  There are 43 artists in the Gallery and all of them are listed at the bottom of this post. 

An artist or artists will interview medical professionals and lay individuals to form a patient centric narrative. The artist will then create representational imagery and paint that picture story upon the business jacket of the provider of the narrative account. The provider of the patient story aka “Walker” will wear the jacket to medical conferences and events in order to disseminate the patient story to a large group of policy minded attendees and to represent the individual patient voice in venues where they are underrepresented. Further, both artist and walker will support the spread of the story and image via social media…. Its widening appeal within the health conference community is creating a new space for patients at such events.”

     Bottom Line:  Thanks to the extraordinary and innovative efforts of Regina Holliday, The Walking Gallery of Healthcare has helped give true meaning to the phrase, “Patient Centricity.” 

Please feel free to comment on this extraordinary and innovative advocacy work initiated by Regina Holliday (and no making fun of my picture) :)

Please feel free to comment on this extraordinary and innovative advocacy work initiated by Regina Holliday (and no making fun of my picture) :)

“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?