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Impersonalized Medicine for Chronic Illness Patients

(This Blog Entry is excerpted from a Chapter in the upcoming eBook, “Chronic Illness: Truths, Tales & Tips” written by Michael A. Weiss)

 Interacting with my Pain Management Doctor

I was moved to write this Blog Entry because of a phone conversation I recently had with my Pain Management Doctor during which I told him I was exceeding my monthly dose of narcotic pain medication and I needed more medication prior to our upcoming appointment in two (2) weeks.  Patients who routinely see Pain Management Doctors can attest to the tremendous anxiety which builds up while making this phone call especially after you’ve committed to taking less narcotics and getting off them completely during recent appointments. That anxiety rises to the level of making you feel like a complete schmuck when you’ve documented this pledge of narcotic abstinence in a Video you posted on the Web which has been viewed by many similar situated patients around the world!  But, as I’ve learned with my case of a chronic illness, you can’t predict the future and lately mine has been a shit storm of one painful major medical catastrophe after another such that I’ve had to postpone my genuine pledge to reduce my monthly intake of narcotic pain medications.

My doctor is very compassionate toward my plight and he doesn’t doubt my veracity regarding these recurring medical tsunamis because I always fax him details of each situation (i.e. specialty doctor names, diagnostic test results, etc.) which could impact the management of my pain.  But during this phone call and within the context of looking out for my best interests, he unintentionally scared me a bit when he explained how repeated patient “violations” of regular monthly amounts of narcotics (i.e., repeatedly calling and asking for more than were prescribed for a given month) will eventually raise red flags with health insurers and soon these bureaucrats might go over his head and make me “defend” my medication requirements. I remarked that the logic in this potential bureaucratic practice of medicine seems to run contrary to the sacrosanct nature of the Doctor-Patient relationship because any red flags should be first noticed by my doctor and thus he or she would speak to me about them and I would have to change my behavior accordingly.  But since my poor genetic makeup, bad luck and auto-immune chronic illness have been causing one painful nightmarish medical problem after another, shouldn’t the documentation approved by my health insurer of the NUMEROUS specialty doctor visits and diagnostic test results make my absolutely necessary pain medication request beyond scrutiny by this same health insurer?

My doctor assured me that he understood my frustration but this is where he believes the practice of pain management is headed and I need to be mindful of it.  His point was duly noted, we agreed to discuss this matter further during my next appointment and he prescribed a specific amount of medication to adequately treat my pain until our next appointment.  After I thanked him and hung up, I thought of the following question which I should have asked him but I sensed he was busy and needed to accommodate my request and then move on to another of his daily responsibilities:  “When I saw you on March 1st and your prescribed a certain amount of monthly medication for a painful Crohn’s Disease flare-up I was having, how was I to know that this flare-up would escalate so substantially by March 12th that I had to take more pain medication per day AND around the same time I began experiencing such severe pain in both breasts and nipples from some unrelated but serious medical problem that taking a shower made my chest feel like a broken-down dart-board and this sometimes added further to my pain and required even more daily pain medication?”

Documenting Complex Medical Problems for Doctors & Insurers

I thought I had “protected” myself from the aforementioned understandable scrutiny when after seeing my NYC gastroenterologist and going for the variety of diagnostic tests he ordered, I faxed every result to my Pain Management Doctor.  Moreover, when one of those diagnostic tests revealed that the “dart-board pain” was likely the result of my body having NO testosterone, I faxed that to him as well.  At this same time, at the bequest of my NYC gastroenterologist I rushed to see an Endocrinologist for the testosterone problem and he sent me for even more tests because my blood levels revealed a startling lack of testosterone. This new “in-network” Endocrinologist was so concerned with my “dart-board” pain that he also prescribed a hormonal drug to help offset that pain.  He also indicated I had to go for additional diagnostic tests to check my Pituitary Gland as a possible source of the problem.  However, within 2 or 3 days of taking this new drug to fix the “dart-board,” my body reacted violently and my already painful Crohn’s Disease flare-up got even worse that being hospitalized was a distinct possibility because I could barely control the pain. As a result, I had to discontinue the medication and I also faxed all of this information to my Pain Management Doctor.

While I am still battling the testosterone problem, my NYC gastroenterologist believes it is due to the massive amounts of Prednisone I had to take last summer to treat a life-threatening lung condition (i.e., “B.O.O.P.”) I contracted from certain Crohn’s Disease medications I had taken for a few years.  However, the four (4) months of taking 60 MGs of Prednisone each day did not ease my B.O.O.P. breathing problems and I had to then endure a four (4) month course of Chemotherapy but I knew all along of the potential short- and long-term problems associated with taking such potent drugs.  Thankfully, my breathing is better due to the Chemo but it has made my Crohn’s Disease much worse, albeit hopefully temporarily, and now I have a painful testosterone problem likely from the Prednisone as a consolation prize for the Prednisone not working on the B.O.O.P!.  Call me crazy, but I couldn’t possibly predict these problems and given that I have substantiated each and every aspect of what I am going through to try and alleviate the pain so that I can finally move forward, I don’t like having to defend or explain why I need more pain medication when there are many days I can’t get out of bed because I am in agony.  I know my Pain Management Doctor will understand once I have the opportunity to remind him of all I am going through but I get worried that health insurers are getting too hands-on and that a cursory review of my primary Crohn’s Disease case will not accurately reflect the pain I must live with on a day-to-day basis.  Given the possibility that the lingering effects of both the aforementioned Chemotherapy and Prednisone may never abate, I am also worried that these complications will never be given their due deference in evaluating the severity of my medical problems.

Living with the Chronic Illness, Crohn’s Disease

In my almost 30 years living with Crohn’s Disease, I have learned that the pain it causes varies depending upon the type of Crohn’s flare-up AND the genetic makeup of each patient.  I am not qualified to comment about genetics other than to say I wound up with “used car”-like genes but from LOVING PARENTS. In that regard and based on how difficult my life has been because of my Crohn’s Disease, I would never have my own child for fear of passing along this often horrific illness.  That’s the bad part about my “inheritance” but the good is that my parents also passed along some great genes which have made me compassionate, tough and resilient so that I can help others who must live with this often pervasive and devastating disease.  They’ve also given me a sense of humor and a whole lot of love. I could not survive without either.

Playing the Health Insurance Game & Working Your Policy

My resiliency and coping abilities notwithstanding, I am beginning to worry about how my increasingly painful and unpredictable Crohn’s Disease flare-ups will be treated by an impersonal healthcare system in which even longstanding doctor-patient relationships are being terminated due to patients being pushed toward unfamiliar in-network doctors who accept lower reimbursement fees from health insurers in exchange for an increase in their volume of patients. Ergo, what was once a relationship-based service industry is now strictly a bottom-line business.  Unless a patient is wealthy, due to financial constraints and the alluring option of seeing their inexpensive in-network doctors, patients can no longer afford to see their familiar physicians who know them best.  This sense of unfamiliarity has a disproportionate negative effect on people who suffer from chronic illnesses and who thus come to rely upon their physicians to maintain some semblance of a quality of life.  In any event, by the time the new in-network doctor is brought up-to-speed, the patient’s employer has likely changed insurance companies to save money and the patient has to choose a new in-network doctor all over again.

I’ve tried to “work my insurance plan” in this in-network manner but my case of Crohn’s Disease is so complex (and now even more so because of the Chemotherapy and Prednisone problems) that I always wind up back with my New York City gastroenterologist who either identifies the problem and/or finds an answer because he sees more Crohn’s patients than most other doctors, he’s a very experienced gastroenterologist and he is also very smart (as not all doctors are smart just like not all lawyers are smart).  That said, my unique case of Crohn’s Disease has cost me so much money over the years because each time I’ve tried to use an in-network gastroenterologist I’ve had a bad or nightmarish result because he or she lacked the expertise, experience or smarts to handle my situation.  More specifically, I went from having MY SPECIFIC CASE OF Crohn’s Disease treated by the NYC doctor to having A CASE OF Crohn’s Disease treated by a local gastroenterologist who could recognize it on an x-ray and could spell it correctly but beyond that, the proscribed treatment never took into consideration my almost 30-year case of Crohn’s which has necessitated over 200 hospitalizations and approximately 20 surgeries.

Another threat to a patient’s choice of physician can occur when the patient’s disease or situation requires such “personalized” care that it raises red flags with health insurers because such treatment is either not within their normal or typical boundaries of care or the treatment required to care for that specific patient is more expensive than the care required for the typical patient suffering from the same ailment (said standards are as determined by the health insurance company). Moreover, that medical treatment solution could be implemented by bureaucrats from the health insurer which will only serve to placate the patient and will not at all address his or her lifestyle, quality of life and it will probably keep that patient in an unfair amount of pain.

Understanding the Severity of Crohn’s Disease

My fear about chronic illness patients receiving impersonal healthcare is because I get the feeling that some doctors, and all health insurers, don’t understand the severity of my Crohn’s Disease and likely the severity of many other chronic illness cases.  This makes me worry about my future because my disease can get even worse.  What am I to do then?  How will it be possible to still get such quality specialized care when I am financially tapped out?  Naturally, these are rhetorical questions but they represent issues which are not unique to me so I find it therapeutic and simultaneously helpful to others to identify them for contemplation by writing Blog Posts like this one.

Bowel Obstruction Pain

Thanks to late night television commercials and general stigmas, many people think Crohn’s Disease is all about diarrhea, bowel control (or lack thereof) and mal-absorption issues. What comes across in those ominous television commercials is fear about losing control and possibly having to defecate in the middle of a business meeting or on romantic date and there is not much mention or imagery of the disabling severe pain caused by the disease.  In my experience, not only is the pain severe but it is also unpredictable and that adds another element to trying to manage it. It is unpredictable in terms of its timing, duration and intensity.  Typical Crohn’s severe pain involves inflammation at any point of the digestive track but predominantly in the intestines.  This swelling of the intestinal walls reduces the diameter of the “pathway” for food and gas to get through the body until eventually the narrowing of the pathway becomes completely occluded and a Bowel Obstruction occurs.  The cramping pain of food and gas trying to nevertheless pass through this intestinal roadblock is VERY painful.  It’s no help that the body’s natural process of peristalsis to move everything down (and out!) the pathway also kicks in and it adds pressure and intensity to that pain.

Experienced doctors and patients have described Bowel Obstruction pain to be similar to that caused by Child-Bearing Labor pain.  If you are lucky, the inflammation of the intestines subsides and you can avoid surgery.  But that can take days or weeks of lying in a hospital on steroids.  It can also become life-threatening if the food and gas threatens to perforate or break through the intestine because then it’s time for emergency surgery. Note:  Since Crohn’s is an autoimmune disease, it can cause or enhance painful inflammation in other parts of the body.  For example, I have had sores on the cornea in my eyes that have hurt as much as Bowel Obstructions. It is a different kind of pain but brutal nonetheless.

Auto-Immune Gas Pain of Crohn’s Disease

In addition to the above typical Crohn’s Disease Obstructional pain-inducing scenarios, I have learned over the years by keeping a daily food/pain diary that Seasonal Allergies (and certain foods) always trigger unique Crohn’s “inflammatory” flare-ups because of the auto-immune component of the disease.   Doctors have never been able to explain this phenomenon to me but if you witnessed it you’d understand why these types of flare-ups are more disabling than any others. I have also noticed that since undergoing Chemotherapy for treatment of the lung condition B.O.O.P., my intestines are much more sensitive and therefore these types of flare-ups are more volatile, frequent and intense.  To that point, it has been surmised by several medical experts that when my body is exposed to any type of allergy it responds by attacking itself due to my auto-immune illness.  The fight my body puts up is with itself and not with the outside agents causing the energy-draining effects of allergies.  It’s as if I have tiny “immune system soldiers” inside me attempting to ward off illness but instead they act more like soldiers from the movie, “The March of the Wooden Soldiers.”  When I need these soldiers the most, they robotically march directly into a brick wall exactly like the Marching Band members in the final scene of the movie, “Animal House.”  Seriously, the “Animal House” movie scene in which the Marching Band members march straight into a concrete wall and continue to bump into one other and cause chaos in the process is how I envision Crohn’s Disease affecting the operative parts of my immune system which should be limber, dynamic, strong and at least pointed in the right direction!

While I may envision allergies attacking my immune system in a rather humorous manner, in reality it is these effects of the auto-immune component of my Crohn’s Disease (and probably also due to having had many surgeries which have left behind scar tissue and a uniquely shaped intestinal tract) which make me cry from bearing down on the pain and feeling so ostracized by the situation.  I caution readers who do not have experience with Crohn’s or other serious illnesses to have an open mind when they read my vivid description of this specific pain and discomfort as even only a few family members have witnessed it due to its completely debilitating, embarrassing and excruciatingly painful manifestation. To start, let’s just say those wooden soldiers inside of me get confused when I’m exposed to allergies and instead of banding together and building up my immune system they do everything but and for some reason related to my Crohn’s Disease the result is an inordinate amount of painful gas quickly building up inside my abdomen.

As this gas builds up inside of me, it stagnates and causes my intestines to become so Grossly Distended that I look like I’m pregnant.  Doctors have never adequately explained this to me but the gas either builds up in other parts of my body or overflows into them from my intestines and I start to look like “The Michelin Man.”  The production of exponentially increasing amounts of gas stretches parts of my insides and causes excruciating pain.  It also comes on suddenly and with seemingly different warning signs each time so I never have been able to anticipate it. During this initial phase I cannot expel gas no matter how hard I try even though that would greatly alleviate the pain.  With each body movement I generate more gas or the gas inside me moves and creates a “gas pocket of pain.” A bed is the only place for me and I often must be physically assisted to get to that bed.  I then pray I fall asleep and dream about watching the air coming out of the “Macy’s Day Parade” Floats.

I Love Lucy” & the Fury of Gas Pain

These gas pains move fast and furiously inside my body but for 1-3 days I can’t expel the gas no matter how hard I try.  I also become so tired from the combined effects of the allergies and my immune system attacking itself that sleep is all I can do but the painful rumblings inside me make it difficult to fall asleep.  It’s like a form of Broccoli torture where your enemy lets you gorge on the gaseous vegetable but they don’t let you fart for 3 days.  But around Day 3 of this Crohn’s Disease seasonal allergy torture I begin to expel the gas but my body seems to manufacture it faster than I can expel it.  The best way I can describe this seemingly perpetual “gas imbalance” is by suggesting you think of the “I Love Lucy” classic television show with Lucy and Ethel in the “Candy Factory” episode and then imagine those lame immune system wooden soldiers inside me saying to the gas producers: “Speed it up.”

Long story short, each time I expel the gas and release some of the pressure, my rear end hurts in ways I find hard to explain other than it feels like the exhaust from jet propelled engines are being thrust out of my backside.  I want to expel the gas to alleviate the gas pains but I dread the fallout pain in my rear end.  This sounds funny but it happens to me several times a year and without warning.  Around Day 4 expelling the gas becomes easier so the pain above my waist gets better but the gas is still so pressurized coming out of me that my butt hurts as if razor blades were coming out of it.  Every time this type of Crohn’s episode happens I feel like a Leper because I don’t know anyone else who experiences it and I can’t be around anyone while I am going through it.   I feel as if I am not in control of what is going on inside my body and it scares me.  I don’t know why it started and I don’t know when it will end.  Taking narcotic painkillers takes a little edge off the pain but soon every 4 hours turns into every 2 ½  hours and 1 pill becomes 2.   Crohn’s Disease seems to be different for each patient but when I can’t get some doctors to understand the aforementioned gas pain flare-ups how will I ever be able to convince skeptical, bottom-line oriented health insurers of its severity?

Without a Witness, No One would Understand my Pain

If my Mom hadn’t witnessed all of the above, no-one would believe it.  I guess there is a reason why I had to move back home when I began to get so sick a few years ago.  I suspect many people with chronic illnesses go through the same types of complex problems which require treatment that is in excess of the norm or different than the norm but personalized medicine for the chronically ill is going to become less available due to health insurers invoking actuary-like limits to the medical treatment of human beings with real and painful medical problems.  I worry about such a healthcare system in which the treatment of abnormal medical problems could raise a red flag which takes away the doctor’s power to treat the patient he or she knows best and instead places the treatment responsibility in the hands of insurance bureaucrats who intend to ignore complex personal patient histories and decide what is best for that patient based on statistics of normal cases and, of course, on their bottom line.  Healthy people may not feel the effects of this yet but those with chronic illnesses know far too well how it feels to be treated like a number.  Our bottom-line:  It’s hard to live with a chronic illness these days.

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