Category Archives: Auto-Immune Disease

Chronic Diseases are expensive medical conditions even with Health Insurance

Posted on April 12, 2013 | 1 Comment

MAW PPP January 28 2013

I get asked this question many times by friends and acquaintances. They care a great deal about me and can’t understand how my Crohn’s Disease has so badly damaged my financial “health” when all along the almost 30 years of my journey with the disease I have maintained my Health Insurance. This is what I tell them when I try to explain.

The “Reasonable & Customary” Health Insurance Financial Gap

Any Chronic Disease such as Crohn’s Disease and Inflammatory Bowel Disease (“IBD”), which are also incurable with autoimmune components, can create ongoing needs for medical care, expensive drug treatments, unpredictable or emergent hospitalizations and possibly several surgeries. While having Health Insurance is BEST, people don’t typically understand that in an ideal setting the Health Insurance Company may pay 70% of the cost of what they deem to be “reasonable and customary” for any of the aforementioned medical costs but there may be also be a significant “Deductible” which has to be met before that Seventy (70%) Percent of Reimbursement kicks-in. Moreover, what Health Insurers deem “reasonable and customary” in St. Louis, MO, for example, may be vastly different from the actual charges in New York City, for example, but these geographic cost adjustments are typically not made by Health Insurers and that could leave a rather large FINANCIAL GAP in the “Charged Amount” which the Patient will have to pay, in addition to the Thirty (30%) Percent balance.

“In-Network” Treatments – Divergence of Financial & Medical Patient Interests

The basic financial fallout is different when the Patient sees an “In-Network” physician but these days there are usually Health Insurer prerequisite “variables” attached to that AND, more importantly, the more complicated your case of Crohn’s or IBD, for example, the more reason you need to see a well-renowned Medical Specialist (as these doctors see more of such cases and thus are better prepared to help you). But these specialty or more experienced doctors increasingly do not accept ANY Health INSURANCE. Since these “Specialists” are in such high demand due to the proliferation of chronic, auto-immune and incurable diseases, they are not lacking for patients and thus do not have to rely upon Health Insurers to increase their patient clientele. Additionally, these Specialists can utilize their unique positions to focus on simply practicing medicine and helping patients as opposed to being the CEO of a Medical Practice which must employ several office workers just for the purposes of facilitating Reimbursement from Health Insurers. I say that with the utmost respect for these medical professionals because if most had the choice they would opt to be the scientists they trained to be in medical school so they could help heal patients.

While it is ALWAYS in the Patient’s best financial interests to see an “In-Network” medical professional when they have Health Insurance, those interests may not align with the Patient’s medical interests in complicated cases of chronic disease or even in diagnosing cases of Crohn’s or IBD, for example, due to their almost individualized symptoms and often difficult to recognize initial manifestations.

Out-of-Pocket Costs of Alternative and Holistic Medical Treatments

Many patients with incurable chronic diseases like Crohn’s Disease are also increasingly turning to “Alternative” treatments or organic foods to combat BOTH their disease and any medication side effects and/or the stress which accompanies their chronic patient journey. Short of minor acupuncture and psychological benefits, Health Insurers understandably are reluctant to get fully behind these “holistic” approaches because in many instances what works for one patient does not work for another. That “individualized efficacy” does not make for prudent general Reimbursement rules. Furthermore, the providers of these alternative treatments are typically not “objectively” or traditionally “credentialed” such that the Health Insurers cannot readily trust their medical expertise in having in-network physicians refer or recommend patients to them. Yet, many Crohn’s Disease patients, for example, swear by these alternative, holistic and organic treatments but they must pay for them out of their own pockets.

Effects of Accumulation of Medical Debt w/ a Chronic Disease

In my case of having Crohn’s Disease for almost 30 years, the “accumulation” of these aforementioned 30% fees, Balance Bills, Specialty Physicians and Alternative Treatments has created substantial medical credit card debt. This aggregate financial burden is common amongst people battling chronic disease and often leads these patients to seek bankruptcy protection in order to reorganize their financial lives. However, this can be a tricky proposition as these patients may wind up having debts written off by medical providers with whom they must have an ongoing relationship due to the chronic nature of their disease. But, there are ways to “negotiate” fair resolutions to these situations since bankruptcy no longer carries with it such a negative stigma and medical professionals are more understanding of the effects of chronic medical debt so long as the patient is candid and upfront with the medical professionals. (Please see my Video Interview with a prominent Bankruptcy Attorney regarding “Bankruptcy Options for the Chronic Disease Individual.”)

Incurable Chronic Disease & NEW Promising, but Expensive, Drugs

In addition to the above VERY BASIC analysis, the cost of NEW and more promising Crohn’s Disease medications, for example, is usually extremely high and Health Insurers typically don’t cover a significant portion of their costs until said medication becomes more widely accepted. These newer medications might also come with side effects which, in some instances, could turn out to be as painful, disabling and expensive as the chronic disease itself. I am going through this at moment with severe respiratory problems which began after I started using one of the “Biologic” drugs which typically help MANY Crohn’s Disease patients. It seems there’s no way to tell who these new drugs will help and who they will harm but it is a chance many, if not most, patients with incurable chronic diseases are all too willing to take due to the lack of effective treatment options and the mere chance of an improved lifestyle.

One Chronic Autoimmune Disease may lead to Another

Many Crohn’s Disease patients, for example, on the more severe “spectrum” of what is a “broad spectrum disease,” often develop secondary auto-immune diseases such as Rheumatoid Arthritis, Lupus, Fibromyalgia, etc. and that begins an almost duplicate “journey” through the Healthcare system causing the patient to incur all of the aforementioned expenses albeit for a different disease. Additionally, years (or, in some cases, just months) of taking certain effective drugs can also create serious (and expensive) medical problems which must also be addressed such as Hip Replacements (from taking the drug Prednisone) or, for example, repeated hospitalized bouts with Pancreatitis from taking immunosuppressant drugs.

Multifaceted Cost of being Disabled from a Chronic Disease

Finally, and please understand that the foregoing is a simplified analysis of a complex problem which has individualized components and can be affected by a variety of variables, the disabling (and unpredictable) nature of many chronic diseases prevent the patient from consistently working and earning a living. Depending upon the severity of the disease and/or the frequency of chronic disease flare-ups, the inability to consistently create cash flow worsens the effects of continually accumulating medical debt. Additionally, besides the disabling physical effects of chronic disease exponentially compounding its financial effect, the feeling of “helplessness” caused by ravaged personal credit ratings and constant medical creditor dunning notices can lead to depression. This depression is real and understandable given the realities of a life constantly battling these types of pervasive chronic diseases on a multitude of fronts.

For the chronic disease patient, knowing that you will, at one time or another in the future, have to continue seeking expensive medical treatment combined with the physical uncertainty of your ability to work is almost like literally adding “Insult to Injury.”

→ 1 Comment

Posted in Auto-Immune Disease, Chronic Illness, Chronic Illness Debt, Crohn's, Crohn's Disease, Health Insurance, Health Insurers, IBD, Inflammatory Bowel Disease, Managing Medical Debt, Medical Bankruptcy, Medical debt

Tagged Auto-Immune Disease, autoimmune diseases, balance billing, Bankruptcy, Chronic Illness, chronic illness debt, Crohn's, Crohn's Disease, deductibles, depression, Disability, disabled, Health Insurance Companies, Health Insurers, IBD, In-Network Physicians, Inflammatory Bowel Disease, Medical Bankruptcy, Medical Bill Bankruptcy, Medical Debt, Michael A. Weiss, out-of-network physicians, Rheumatoid Arthritis

Crohn’s Disease, Humira, FDA, Respiratory Problems & “BOOP”

Posted on March 30, 2013 | 7 Comments

2013-03-26 19.12.03

What Exit in New Jersey are you from?

This picture of MY ROOM IN THE EMERGENCY ROOM (”ER”), taken by me on Tuesday, March 26, 2013, from a New Jersey Hospital’s Emergency Room (“ER”), was demanded to be deleted from my phone by that hospital’s security personnel as they escorted me out of the ER, after I was forced to remove my own Intra-Venous Line (“IV”) causing my blood to squirt so high it almost hit the ceiling, No door, no curtains, no privacy; no HIPAA compliance since I was barely being treated; just a gurney, under an Exit Sign, in a hallway in the ER, where I was essentially IGNORED for 5-7 hours. My medical problems had dehumanized me to the point where some might say I was now just a lyric in a great Bruce Springsteen song like “Jungleland” where song characters agreed, “they’ll meet ‘neath that giant Exxon [i.e., Exit ] sign, that brings this fair city light.” If that doesn’t typify the stereotype about New Jersey, …

These days, Emergency Rooms Render Triage Medicine on Steroids

Ironically, and in retrospect, this Exit Sign was fitting as a description for a bad experience in the ER of a New Jersey (“NJ”) hospital given all the NJ Turnpike Exit jokes which have come to unfairly define New Jersey in the lexicon of the public’s awareness. However, please try and understand I am not identifying the specific NJ hospital because I don’t think that’s fair since I must have caught it on a busy night and my condition is extremely complicated such that a bad experience was certainly possible, as it is with ANY emergency room visit in hospitals all across the United States. After all, emergency rooms in the United States are designed to render triage medicine. But due to ERs being overtaxed as sources of Primary Care for many Uninsured patients, the ER triage medicine model is on steroids out of bare necessity to keep serving its respective local communities. If the New York Yankees slugger Alex Rodriguez is any example of what happens to steroid users over the long run, it is no wonder why our ERs are consistently providing unsatisfactory “consumer” results. Still, in Forty (40) years of going to hospitals and emergency rooms, this was BY FAR my worst experience in over 200 hospitalizations and ER trips. But just like there exists a Bruce Springsteen, Jon Stewart and Frank Sinatra to extinguish the stench from every “Jersey Shore” and “Housewives of New Jersey” entertainment industry venture which somehow permeates the mainstream’s consciousness, this experience with a NJ hospital and emergency room does not reflect the typical NJ medical interaction.

The Patient Consumer in a Hospital Emergency Room

Now that I’ve set the stage for this ER debacle and provided some context for my experience, please note this will be a two (2)-part Blog Post with this first one adding the necessary medical context for my ER trip so that you understand the seriousness of my situation and thus why I was so disappointed in how I was treated. Part 2, which I will post shortly, will detail the “consumer” side of things which prompted me to call my credit card company to cancel the $100.00 ER fee I had to pay pursuant to my Health Insurance Plan. More specifically, just as I might revoke a credit card charge to a shady automotive repair shop which I thought had ripped me off, I did the same with this $100.00 ER charge as I believed the services rendered to me were almost non-existent and I thought it was unreasonable to pay for being either mistreated or treated like an animal. I don’t blame any one person in that ER but my experience made me re-think how I must use a hospital ER moving forward. I hope you come to the same conclusion after reading my story. But before detailing what happened to me in the ER on Tuesday, March 26, 2013, it is important that you understand WHY I went to the ER. Please trust I will make this part of the journey as interesting and entertaining as possible.

Brief Medical Background regarding my Crohn’s/Lung Condition

In order to best comprehend my contention that I was treated like an ANIMAL inside this NJ Hospital’s ER, it is necessary to share with you some pertinent personal medical details regarding my condition since it is a repeat of something I went through during the beginning of the spring in 2011. As many of you already know, I have been battling the autoimmune and incurable Crohn’s Disease for almost 30 years. I was diagnosed in and around 1984 when there wasn’t very many treatment alternatives other than surgery for my case of severe (and aggressive) “Obstructional” Crohn’s Disease. As a result, as of today’s date, I have endured approximately Twenty (20) + abdominal surgeries and over Two Hundred (200) hospitalizations/trips to the ER. I have also had several other serious surgeries related to, or caused by, the autoimmune aspects of my Crohn’s including, but not limited to, spine fusion surgery, two (2) cataract surgeries and knee, nasal and toe surgeries.

In approximately 1998, after I believe first being formally approved in 1988 as a “group” of “Anti-TNF Agent” drugs by the Food and Drug Administration (“FDA”), the FDA began approving certain specific brands of these drugs to help place Severe Crohn’s Disease patients into remission. Without getting too scientific, these “TNF inhibitors” or “Anti-TNF Agent” drugs caused TNF inactivation and that has proven to be important in controlling the abnormal inflammatory reactions associated with autoimmune diseases like Crohn’s Disease where the abnormal reaction causes the body’s immune system to attack itself, rather than the cause of the inflammation. The identification of the role of the “TNF” in the inflammatory response of patients suffering from autoimmune disease and the development of drugs to mitigate or control the TNF response were considered major breakthroughs in the treatment of incurable, autoimmune diseases. As a group, these Anti-TNF Agent drugs are referred to as “Biologics.”

Introduction to “Biologics”

My first experience with Biologics was with the drug, “Remicade,” and it worked VERY WELL, at first, but then I needed the drug infused every 6 weeks instead of 8 and then I soon needed twice the dosage, until I started to develop signs I was allergic to it. My doctors then watched me very closely and pre-medicated me with steroids, as they infused what would be my final dose of Remicade. Unfortunately, within 48 hours of that Remicade infusion, I developed what can only be referred to as a “Delayed Anaphylactic Reaction” when my throat began closing and I was rushed to the hospital to be pumped up with even more steroids to counteract the allergic effects of the Remicade. Please note this does not happen to many Remicade patients and I know MANY such Crohn’s Disease patients who are still on Remicade and feeling GREAT. Anecdotally, I am also aware of many Pediatric Crohn’s Disease patients who do VERY WELL on Remicade. In my case, however, as the Remicade had staved off what appeared to be an impending serious Crohn’s abdominal surgery, once I stopped the Remicade I soon thereafter turned up in the operating room.

Enter, the Biologic drug, “Humira”

Post operation, my doctors were concerned about me being on no medication to help thwart off any possible Crohn’s recurrences because my Crohn’s Disease had been very aggressive and each time it flared the possibly of surgery was all too real yet I had very little small bowel left. Therefore, a year or two later I was put on the next “invented” Biologic Agent drug for Crohn’s, namely, “Humira.” From a layperson’s perspective, and as it was explained to me, the differences between Remicade and Humira appeared to be that Remicade was discovered/developed using mice proteins whereas Humira was more pure and based on human proteins so that a patient allergic to Remicade might have much better success with Humira. Humira was also an injectable drug as opposed to an infused one so it offered a greater degree of control over one’s life and lifestyle and that made it even more appealing to patients.

However, Humira came with many Medical/Legal Disclaimers about side effects including possible severe Cancers and lethal Respiratory Side Effects. At the time I started taking Humira (approximately 2005), I assumed these Disclaimers were included in the drug’s labeling because there now existed some historical real patient data and a bunch of pharmaceutical (“Pharma”) lawyers were simply being thorough and candid in provided new Humira patients with as much patient data as possible. These Disclaimers were subsequently substantially strengthened in August, 2009, to reflect the Cancers which were occurring in Crohn’s patients using Humira such that the FDA issued the Pharma-dreaded “Black Box Warning Label” to reflect the possibility of Lymphoma being a side effect of taking Humira.

Humira, the FDA and YouTube

Beginning in November, 2009, some of the most serious changes in the Humira label came when the Black Box of the label was strengthened to include a serious risk of “opportunistic” respiratory infections including “Histoplasmosis” and “Bacterial Sepsis,” along with the risk of lymphoma and other cancers in children and young adults. The FDA even utilized YouTube in an extraordinary measure to convey these risks to Health Care Professionals and to Patients via THIS Video. The Humira label was subsequently strengthened even further in response to DEATHS which were occurring from rare but fatal Fungal Lung Infections in Crohn’s patients using Humira. The FDA again used THIS Video and YouTube to convey the dangers of these Fungal Infections. Leukemia was also subsequently added to this list of known serious side effects of taking Humira for Crohn’s Disease. Despite this pattern of increasing risks of cancers and fatal respiratory side effects, someone in the marketing department of Abbott Laboratories, the manufacturers of Humira, apparently didn’t “get the memo” from the FDA as TV commercials celebrating the success of Humira placing Severe Crohn’s Disease patients into remission increased and started replacing Erectile Dysfunction drug commercials as the most rotated and parodied drug commercials on TV. WATCH the TV Commercial HERE.

How Humira affected me re: Respiratory Side Effects

This began to affect ME approximately 12-18 months after I started Humira when I began to experience such severe and unpredictable joint pain that it felt as if I were a Voodoo Doll being pricked by a sadistic arch rival from high school. The sudden onset of the joint pain was often so extreme that I could be walking and talking one minute and then laid out on the sidewalk the next. However, my Crohn’s Disease seemed to be in remission so I was “okay” with the tradeoff of 50 daily trips to the bathroom now supplanted by being pricked with sharp needles all over my body by a guy named Skippy from High School just because one night I made out with his ex-girlfriend. But, Skippy’s presence in my life was quickly replaced by recurring and increasingly intense bouts of Bronchitis and Pneumonia. I, like most other people with compromised immune systems, had suffered from occasional respiratory infections and whatnot but since starting Humira whenever I got Bronchitis it almost always turned into Pneumonia and then the symptoms would be so bad I had to be hospitalized. That had never happened before.

It is one thing to be 45 and hospitalized for recurrent Severe Crohn’s Disease but it’s entirely a different story when you begin to cough up blood and run fevers as high as 105 to the point where your gastroenterologist insists you be hospitalized. This happened several times until I started researching it in the wonderful world of health care social media when I learned that other Crohn’s Disease Humira patients were experiencing the same severe respiratory problems. The difference was, according to them, when they discontinued the Humira; the respiratory problems soon thereafter disappeared. Shortly after recovering from my latest hospitalized bout with an epic case of Pneumonia, I asked my gastroenterologist if I could stop the Humira in hopes of alleviating these respiratory problems which were becoming far too frequent and disabling. He acquiesced but insisted that I soon thereafter start taking the newest Biologic drug called “Cimzia” because he didn’t want me on no possibly “preventative” medication, again, given the aggressive nature of my Crohn’s and due to the fact that I didn’t have much more small bowel to donate to a surgeon. I agreed.

Cimzia

Literally a few weeks after stopping Humira, my lungs felt normal and it seemed I had gotten back the strength to run, play tennis, chase women, etc. I didn’t want to start the “Cimzia” until I knew for sure if stopping the Humira made that healthy difference in my lungs. To truly trust such a conclusion, however, I needed to be methodical in my approach. I therefore abstained from taking Cimzia until I was sure I had conducted a “controlled experiment.” I also wasn’t so eager to jump back into the world of Biologics and thus took my time beginning the Cimzia. After several months going medication “commando,” I was convinced I had isolated the Humira as the probable culprit for my hospital-grade respiratory problems so I was enjoying getting back to playing tennis and chasing women. I started the Cimzia in and around 2009 after my tennis game had improved and I was again content that I was clueless about women.

Suffice it to say, the medical progression to Cimzia was analogous to changing from Remicade to Humira and it was also injectable so my lifestyle was improving and I was optimistic about my future. But after only a VERY short while on Cimzia, the unmistakable “Skippy” joint pain and respiratory effects I had experienced while on Humira had come back, and this time they came back in spades. It was unclear to me if my respiratory problems were caused by the cumulative effects of being on Humira for a few years or if they were triggered by an allergic reaction to the Cimzia, which I had just started. (Subsequent to my respiratory problems relevant to this Blog Post, in July, 2012, the FDA again turned to YouTube to distribute THIS Video with their Black Box Label Warning for Cimzia due to DEATHS that were occurring from Fungal Lung Infections.)

The Beginning of BOOP and Severe Lung Problems

It was spring, 2011 and I began to come down with strange spikes of 105 fever which would last but a few hours and go away on its own. Then I developed Bronchitis which turned into Pneumonia and that began my “Darkness on the Edge of Town” as I had to go to local New Jersey hospital emergency rooms because my breathing became seriously labored (and I lived nearby in NJ). The first few times I was admitted for tests and to determine the most effective antibiotic to treat my severe respiratory symptoms but soon it appeared I possibly had a strain of Pneumonia that was resistant to drug therapy. In time, however, one of the antibiotics seemed to work and I was discharged but only to head directly into NYC to see my 30-year Crohn’s Disease doctor who is the most experienced and smartest physician I have ever encountered. Yes, I had a pulmonary problem but given the respiratory problems associated with the aforementioned Biologics I had taken for my Crohn’s Disease, I knew this current medical fiasco was predicated on, or somehow connected to, my Crohn’s Disease treatment history. To that end, he first tested if I was allergic to the Cimzia but I was NOT. Nevertheless, given my rather extreme and recurrent respiratory problems, I had no choice but to discontinue the use of ALL Biologics. I was again going medication “commando” with my Crohn’s Disease and my NYC doctor was very worried.

Having recovered from a dangerous case of Pneumonia for which I was hospitalized in NJ several times, one day I walked a few feet to the mail box to pick up my mail and my sudden shortness of breath caught me by surprise and I passed out. When I awoke, I couldn’t breathe and talk at the same time. Trying to take a deep breathe was like sucking as hard as possible on a toothpick-sized straw. I got scared very quickly and called my Internist who recommended I see a certain local respected NJ pulmonologist. That doctor was kind enough to see me that day and as I struggled to breathe walking only the 50 feet from my car to his office, he merely tested my blood/oxygen levels and deemed me FINE. I almost had to use sign language to communicate with him as I couldn’t catch my breath from that 50 foot walk but he just smiled and said I must have a heart problem so I should see a Cardiologist. From my perspective, it felt as if I had brought my dry cleaning into the dry cleaning store yet the owner of the dry clothing store was telling me I had to bring my jacket and shirt into the bagel store across the street in order to get it cleaned and pressed. Let’s just call this doctor the “dry cleaner” because unfortunately he was a recurring character in this 2011 story.

The 2011 BOOP Emergency Room Visit

Luckily a friend of my family is a cardiologist and he saw me immediately after the dry cleaner had somehow misconstrued my simultaneous inability to talk and breathe as the new pulmonary endurance standard for the Olympic athlete. The cardiologist did not concur with the dry cleaner and was SERIOUSLY CONCERNED about my inability to multi-task in this manner and after confirming my heart was fine he ordered me to go to the emergency room at a prominent NJ hospital very close to where I lived at the time. This was also the same hospital I had been in and out of with my recurrent respiratory problems and seemingly drug-resistant Pneumonia so everyone knew me but I’m not so sure they were happy to see me as I was very scared and frustrated. The anxiety which accompanies the inability to breathe is very much like the feeling a 9-year old Little Leaguer gets the first time he collides with the catcher and has the “wind knocked out of him.” It feels as if you’ll never be able to breathe again and all you can do is wait for your body to “reset” itself. But at 9 years old, you are unfamiliar with this process so it’s frightening.

At 48 years of age, I felt the same way each time I had to re-visit an emergency room and go through my medical history with a nurse. My inability to consistently breathe and convert the process to an involuntary bodily function was not “kicking in” and talking only made it worse. Fear of the unknown is as traumatic at 48 as it was at 9 years of age although ice cream seemed to help when I was a kid. Now it was just successfully flirting with an attractive nurse all the while lying to myself that she’s laughing at my jokes because I’m very funny. But what jokes? I couldn’t carry on a conversation about my medical history AND also breathe. Since I’m no Brad Pitt, without those jokes I was again, “running into the catcher.”

Anyone know a good Dry Cleaner?

The ER head physician was also familiar with my case and if memory serves me well, she didn’t know what to do for me since an apparent well-known pulmonologist at the hospital who was the on-call pulmonary specialist that evening had already deemed my lungs as being FINE. (My luck, this was the dry-cleaner. I was not impressed, or in agreement, with his conclusion and I respectfully made that known from the get-go. After all, it was counter-intuitive to think I did not have a respiratory problem when I couldn’t breathe and my heart had checked out just fine.) Thankfully, routine ER flat x-rays showed something strange in my lungs and despite the cost to the hospital of performing a CT Scan on me and the associated blow to the dry cleaner’s ego, they had to perform more diagnostic tests to confirm the dry cleaner’s diagnosis that my respiratory system was just fine and that my inability to breathe was being caused by some other medical problem. As I also recall, the cardiologist I had seen suggested that I be tested for a Blood Clot in my lungs due to the recurrent Pneumonia I had been dealing with so that test was also conducted.

The Definitive May, 2011 BOOP CT Scan

It was a rather intense and long emergency room visit but when the CT scan results came back I went from being some pain-in-the-ass patient to what they were referring to as a VERY SICK YOUNG MAN. I knew that because I looked at my patient chart and saw that written in one of the margins. If I only knew who wrote it I would have demanded an explanation and fired that doctor but I was unable to do so. Based on the physician personalities I had to deal with, it could have been one of five doctors. I didn’t think it was very compassionate to write such a mendacious statement which would affect the opinions of all health care professionals who would subsequently read my patient chart. But I also knew I was perceived to be very sick because they had now formally admitted me to the hospital. Having finally found some peace and quiet in my own room, I had briefly fallen asleep only to be woken up by a small army of doctors surrounding my bed, which included the infamous dry cleaner. His face was located within striking distance of my left foot and I felt like doing a “Karate Kid” on his face but an authoritative thoracic surgeon sharpened my focus to eye level when he said he needs to perform lung biopsy surgery on me ASAP while I am still breathing and not on a Ventilator. Huh?

The Journey to the Correct BOOP Diagnosis Begins

He was very nice and I liked him immediately even though he told me I might have lung cancer. I’m funny like that; I evaluate “new” people by their sincerity rather than by the content of their dialogue. I believe in the old adage to only believe what you see and not what you hear. I also won’t play poker with a guy named “Doc” and I won’t eat at a joint call “Mom’s.” I look for “tells” that might come in handy later. Anyway, this thoracic surgeon explained to me that they saw a great deal of damage in my lungs and needed to find out what was going on so they could devise a treatment plan. Normally they would simply perform an endoscopic-type procedure called a bronchoscopy and go in through my mouth but in this case they needed larger biopsy sizes and the doctor again explained that I might soon be on a ventilator so they needed to formally operate. That word “ventilator” kept coming up almost as if they were talking about someone else. All they while, the dry cleaner was nodding his head in approval of everything said by this erudite and experienced thoracic surgeon and I felt like looking at him and saying, “Really? Where the “f**k” was your diagnosis when I presented at your office not being able to breathe and talk at the same time yet you deemed me fit as a fiddle?”

Patient Engagement kicks in

Instead, my brain woke up and I engaged the thoracic surgeon in an intellectual discussion about how I came into the hospital with Crohn’s Disease but now might have Lung Cancer having never been a smoker? He then started asking me if I had ever been a coal-miner or if I had lived in certain parts of Ohio and it began to feel like I was being PUNKED. Back then I was an Entertainment Attorney and a Film Producer and the closest I had come to a coal mine was watching a documentary about one on TV. He apologized for the grim nature of his questions but he explained that they suspect I had “foreign materials” in my lungs and they had to figure out how that happened. That’s when I recalled all the Humira Black Box Label Warnings and I knew I needed to somehow get my NYC Crohn’s doctor into the conversation. When I brought up the possibility of the Crohn’s drugs possibly contributing to whatever lung problem I had, that’s when the dry cleaner decided to speak and he incorrectly, but very confidently, explained that one thing had nothing to do with another. I just smiled because it beat crying as I knew dealing with this problem was going to be two-fold. That is, I was going to have to deal with the medical problem AND I was going to have to obtain my medical care from a pulmonologist who understood this connection and I assumed finding that person was going to be difficult to do.

The Lung Biopsy Surgery for BOOP

The lung surgery went fine but the post-operative debriefing with me was surreal. I did NOT have Lung Cancer but the thoracic surgeon admitted to me that he had seen damage to my lungs he had never seen before and he had been operating for MANY years. I admired his candor and liked him even more for being straight with me but I was worried. Again, there were at least 8 doctors surrounding my bed and the conclusion they were prepared to make, subject to clarification of the biopsied parts of my lungs being confirmed by a Pathologist, was that I had a rare form of Pneumonia called “Bronchiolitis Obliterans with Organizing Pneumonia,” better known by its acronym, “B.O.O.P.” Once the word BOOP came out of the doctor’s mouth I could tell by looking at the faces of the other doctors that they had never treated a BOOP patient before and were only familiar with it from a textbook. My suspicions were confirmed when the dry cleaner said to the bagel store owner (another clueless pulmonologist at my bedside) that 40 mgs of Prednisone for one year should do the trick. Given my vast experience unsuccessfully taking 40 mgs of Prednisone for my Crohn’s Disease and my substantial difficulties breathing, I remember thinking, “That might work for his dog, but it was not going to work on me.”

The Post-Operative Discussion & firing the Dry Cleaner

As the discussion continued and I began to absorb my new reality. It felt as if my head was swirling around 360 degrees because I am quite familiar with Prednisone and its myriad of side effects from my Crohn’s Disease and being on it for a year would be catastrophic in so many ways. Further, Prednisone never seemed to work on my Crohn’s Disease, as demonstrated by the high number of surgeries I had to endure, and I was equally perplexed by the relatively low daily dosage of 40 MGs because that dose never worked for me when I had inflammation in my small bowel and here I was not able to breathe and talk at the same time so I asked for an explanation. The straight-shooting thoracic surgeon explained there was a mathematical formula to figure out the daily dose and then the overall dose would be carefully weaned down in calendar quarters over the course of said one year. But he then acknowledged that given my medical background, my Crohn’s Disease, an already compromised immune system and an ineffective history with Prednisone, 60 MGs was, in his opinion, the more appropriate daily dose. He them tempered that opinion with a declarative statement that he would not be “treating” the BOOP but the gentlemen standing around my bed would be and therefore it is their call.

Confronting the Doctors who didn’t LISTEN to me

I thanked the thoracic surgeon but said he was not entirely accurate because I want the dry cleaner out of my room and off my case because he will not be treating me. That pretty much set the stage for my relationships with the NJ pulmonologists who had seen me to-date and who had completely missed this BOOP diagnosis. Please understand that missing a diagnosis never bothered me if I felt the doctor was trying to help me. Even mistakes don’t bother me if the intent was to help me and I am not too badly damaged as a result. In this instance, however, I was seriously annoyed at the callous manner in which my symptoms were ignored by each of these doctors. It was as if they knew better but chose to rely on statistics that given my NY/NJ/LA background, I couldn’t possibly have BOOP or “foreign materials” in my lungs.

But with my history with Crohn’s Disease, Biologics and the FDA’s rather pronounced Black Box Label Warning for Remicade, Humira and Cimzia, they should have been asking me different questions when I first presented at their respective offices and/or in the emergency room with repeated serious bouts with Pneumonia. In my experience of almost 30 years with an autoimmune disease like Crohn’s, I have built up tremendous credibility with doctors because I know my body and I don’t like being sick. Yet, because BOOP is so “rare,” these NJ pulminologiosts just assumed I was crazy or somehow seeking attention. Now I had the opportunity to vent my frustration with them and for the purposes of going into battle with BOOP with a a sound mind I felt it necessary to share my disappointment in them, with them. Much like a star basketball player “playing” the refs in one game anticipation of his next more important game or series, I was also doing this to ensure that I would be treated differently going forward.

Besides, in my mind I was already at the Lincoln Tunnel on my way to see my trusted NYC Crohn’s doctor so he could get in the loop and recommend a NYC pulmonologist who he could work with in getting me through this most unexpected of nightmares courtesy of the combination of my Crohn’s Disease, Abbott Laboratories, Humira and the FDA.

My NJ Pulmonologist – Personality & Bedside Manner of a Handball

It took a few days to heal from the lung surgery and it was VERY PAINFUL so all I could do was have people make phone calls for me to my NYC doctor since I could barely speak. As soon as I was strong enough to get into NYC, I met with him and he gave me the name of a female NYC pulmonologist and I made a projected appointment with her while I followed the directions of a different NJ pulmonologist (i.e., the “bagel store” owner from the NJ hospital who also surrounded my hospital bed but only listened to the thoracic surgeon share his findings so we never actually spoke while I was hospitalized). As I was to find out after consulting more closely with him, he had a passive-aggressive personality and not only did he NOT acknowledge the connection between my Crohn’s, having taken Humira and developing BOOP, but he had the personality and bedside manner of a handball. Clearly, I had no palatable options at the time so I tried to stay positive while I battled a possibly life-threatening condition with the hope that my NYC doctors would figure out the best solution to my problem.

Notwithstanding this doctor aggravating me to no end with his lack of confidence in anything I contributed to the conversation, but his patronizing and passive-aggressive style of feigning listening to me was insulting my intelligence. Yet, I knew there was nothing to do but take the 60 MGs of Prednisone until I was better situated with a NYC pulmonologist who would collaborate with my NYC Crohn’s doctor. So, I just feigned my interest in his every word but just made sure he never deviated from the 60 MGs of Prednisone protocol. I was approximately one-month into the 60 mgs of Prednisone regiment when my appointment with the NYC pulmonologist came up. Coincidentally, this prickly and rude NJ pulmonologist managed to insult my mother so disrespectfully during one of my last appointments that I stopped him from talking about me (she was temporarily out of the room) and respectfully requested that he apologize to my Mom upon her return to the room. He looked at me like I had just delivered his lunch and was asking for a $100 tip. Accordingly, he blew me off yet I persisted. He apologized to her. At that moment of his patronizing apology to my Mom, I put all my trust in the NYC pulmonologist who I hadn’t even met yet. If my NYC Crohn’s doctor recommended her, she was going to be good enough for me.

The Concept of “The Second Opinion” – it’s like the Seinfeld “Reservation”

Having already made up my mind that I had to change doctors, I told this NJ Pulmonologist that I was getting a second opinion in NYC and there was a good chance I would stop seeing him because I needed a doctor to work with my NYC Crohn’s doctor and he clearly did not believe in that Crohn’s Disease connection. I was trying to be as non-confrontational as possible but then he did something I have never seen a doctor do up until then, or since. He asked me if HE could talk to this NYC pulmonologist BEFORE I SAW or SPOKE TO HER so he could bring her up-to-speed. His suggestion was so bizarre that it caught me off guard but my instincts formed words and they sounded very much like this: “Doctor, the whole point of getting a Second Opinion is to seek objective input into a situation that would benefit from ANY additional clarification. Therefore, any communication between you and this potential new NYC pulmonologist would taint her perspective and put me back at square one under your care, and with all due respect, I no longer want to be under your care.”

Then I smiled as I caught myself since I had revealed that he was actually being territorial about me being his patient. Did he really care about me or did he just not like to lose patients? I wished the former but knew it was the latter based on his actions, especially the way in which he treated my Mom. Then I got annoyed at his passive-aggressive approach and I explained to him the example the comic Jerry Seinfeld uses when describing the concept of the “Reservation.” I was trying to lighten up the moment so he would drop it but he actually took me serious and said he watched “Seinfeld” and asked, “What was I referring to?” I just laughed and firmly told him he is NOT to contact this NYC pulmonologist (as I had already given him her name). He then seemed to admit “defeat” and said I will need to get all the films and reports organized so that the NYC pulmonologist could make the most informed decisions “and that could take a while,” as if he were rooting against me making any progress by going to see a NYC pulmonologist.

I sarcastically told him his “negativity and clear interest in my best medical interests are duly noted” but I had already complied each and every diagnostic test including the films, reports and all the blood work. He looked at me as if I had just run the 4-minute mile in Clogs. He apparently was so accustomed to being “in control” that he was amazed a patient actually asserted himself. I genuinely thanked him for his help up until that point but did tell him that our personalities did not mesh and I need them to, in order to be treated, especially to take on a battle like this one. I then left him and his God-complex for some Pizza joint as being on 60 MGs of Prednisone for one month is like being pregnant. You eat, what you want to eat, when you want, and where you want.

Meet my NYC Pulmonologist

I very much liked the NYC Pulmonologist and from the get-go she and my NYC Crohn’s doctor were on the same page regarding the BOOP having a significant tie to my Crohn’s and the Humira or other Biologics. I tend to see Humira as the primary culprit of my respiratory problems because I was an avid athlete all my life until I started taking Humira. It was also during the time on Humira that I began to be hospitalized like a 90-year old for what should have been simply bedridden Bronchitis events. In any event, the only known effective course of treatment for BOOP was the 60 MGs of Prednisone for one year tapered over calendar quarters, so there wasn’t much for this new NYC pulmonologist to do other than monitor me but there was something about her bedside manner and genuine care for my plight which simply made me feel good. This intangible quality would become incredibly significant because after a few months on the Prednisone my body began to deteriorate even further.

For example, I contracted a serious case of regular Pneumonia for which I had to be hospitalized twice and I also had Pleurisy for which the pain was “off the charts.” Luckily, I’ve seen a well-respected Pain Management Doctor for several years due to all of my medical maladies and he was able to control my pain. It wasn’t just the Pleurisy; it was the contrasting feeling that the pressure of a Piano was always on my chest when I tried to breathe and occasionally I would get dagger-like pains in my lungs from the Pleurisy. With the Pleurisy, the daggers became unmanageable, even with medication. The Prednisone’s typical but myriad of side effects also caused extreme joint pain and by the fourth month I had gained 45 pounds so everything was intensified.

The Turning Point – August, 2011

Throughout the entire time, the NYC pulmonologist stayed in close contact with my NYC Crohn’s doctor and my blood count was monitored routinely. But, when I got regular Pneumonia after four (4) months of being on such a high dose of Prednisone and had to be hospitalized in NYC for the second time (approximately August, 2011), it was clear something had to be changed as my breathing and pain were not getting better yet the side effects from the Prednisone were causing tremendous additional systemic medical problems. One night during that August, 2011 stay at Mt. Sinai Hospital in NYC, while I tried to fend off the Migraines caused by the Prednisone to get some sleep, the NYC pulmonologist stopped by to check up on me. I was VERY frustrated with my lack of progress battling the BOOP and the massive dose of Prednisone was playing games with my mind. This prompted me to ask the doctor if there was anything else I should be doing? I personalized the situation and asked her, what she would do, if she were me? She replied that the ONLY thing I hadn’t done, which she would do, was obtain the actual Biopsy Slides from the New Jersey Hospital where the lung biopsy was performed so that the Pathology Department at Mt. Sinai Hospital could render a second opinion.

She even offered to make a few phone calls on my behalf to get the ball rolling since my lung power would be exhausted after making just one phone call. In that regard, she came back the next day with the information I needed and even though it was going to be VERY EXPENSIVE, I had to do it because it didn’t make scientific sense that my body wasn’t responding to the Prednisone given the clear BOOP diagnosis. Although, some people don’t respond to the steroid treatment and they either die or the BOOP becomes chronic. I wasn’t crazy about either option but I was intent on doing all I could to help the doctors, help me. But it was going to take a few months for the actual slides to be transferred and reinterpreted so my actions would not reveal any beneficial information for quite a while. This is when the doctors brought in a NYC oncologist because they were trying to figure out if a different class of drugs would work on my BOOP, which I was told was a “T-Cell” disease.

Histoplasmosis Test

My 30-year NYC Crohn’s doctor also had me tested for the often fatal Lung Fungal Infection, Histoplasmosis, just to ensure that EVERYTHING possible was being tried to help me. It turned out to be a simple Urine Test but it took my doctor quite a while to figure that out from a very challenging case he had a year before mine. This is why I am always so open about my medical challenges as Crohn’s Disease and its treatments can cause some hard to identify medical problems and I want doctors and patients to LEARN from all I must go through. To that end, I am thankful to that patient who essentially “taught” my Crohn’s doctor what to look for in case of Histoplasmosis. Thankfully, he survived and was diagnosed and treated in time.

My foray into Chemotherapy and Cytoxan w/ the RIGHT Doctors

Since my NYC Crohn’s doctor knew me so well for 30 years, it was his decision to discontinue and wean me off the Prednisone as fast as was medically safe to do so. But at the same time he organized a “sit-down” with the NYC pulmonologist and the oncologist and they decided to try a several month course of monthly infusions of a chemotherapy drug, “Cytoxan.” While the mere word “oncologist” scared me, I also very much liked this oncologist and I also understood why they were considering the Cytoxan after they explained the “T-Cell” analogy to me. Since I trusted the three (3) doctors with my life, there was no decision for me to make as they made it for me. I think I learned during the 2011 BOOP ordeal that the best advocate a patient can be for him or herself is in selecting the “right” doctors for him or her. That doesn’t always mean the “best” doctors but it should always be the doctors best suited to the patient/person and to the task at hand.

I was so sick that I needed some degree of autonomy since I was too ill to be involved on a day-to-basis. The combination of a Crohn’s Disease expert who knew me for almost 30 years, a compassionate Pulmonologist who understood the systemic connection between my Crohn’s and the BOOP and a very experienced Oncologist who also had worked closely with the two (2) other doctors rounded out a medical team whose sum was much larger than its parts. I had no time to search for the “best;” I only had the energy to find a core of caring and creative doctors who would listen to me and observe how I responded to each and every treatment. Having achieved that, my work was completed. I was in their hands and that made my responsibilities going forward very simple. I just had to be positive and “open” to healing. The only concern they had was of the unknown side effects the Cytoxan might have on my Crohn’s Disease but since I couldn’t breathe, was in tremendous pain and was having difficulties staying positive about my future, I just did what I was told. “Damn the Torpedoes” as Tom Petty might have told me. I then had the first Cytoxan infusion while hospitalized at Mt. Sinai Hospital and was released a few days later once the Pneumonia and Pleurisy were improving.

Perspective – A Patient Tool for Healing

I was soon off the Prednisone and had my second Cytoxan infusion in the office of the NYC oncologist. He also tested my blood count regularly and I was starting to improve. Before the second infusion of Cytoxan, I had to mentally map out a plan to try and breathe if I was able to get off the couch and walk 15 feet to the kitchen. However, a week or so after the second infusion of Cytoxan, breathing wasn’t always on my mind because it was gradually getting back to its “new normal.” This got even better a week or so after the 3^rd infusion but then I started to get severe Crohn’s Disease pain and actually had a dangerous small bowel obstruction for which I again had to be hospitalized at Mt. Sinai Hospital in NYC. This is when I knew my “perspective” had to be altered because I had dealt with MANY Crohn’s Disease situations and will likely have to deal with many more in my lifetime but not being able to breathe was something which could have killed me so I tried to look at my situation as a lucky one, albeit with some Crohn’s complications.

Dueling BOOP Pathology Reports

I don’t recall if this hospitalization at Mt. Sinai was after the 3^rd or 4^th infusion of the Cytoxan but it was during this hospitalization that the Pathology Department at Mt. Sinai Hospital had finally received the Lung Biopsy specimens/slides and had issued a written pathology report. On the day I was to get the next Cytoxan infusion, which would have been my 4^th or 5^th, the NYC doctors came into see me and told me they had to discontinue the Cytoxan because the Pathologists at Mt. Sinai Hospital did not entirely agree with the opinion of the Pathology Department at the New Jersey Hospital which had initially diagnosed me with BOOP. More specifically, and it really was a hyper-sensitive analysis, the pathologists at Mt. Sinai Hospital agreed that there were nodules or particles of BOOP in my lungs but not enough to mathematically classify my condition “as BOOP.”

On the one hand, me and my doctors were not very “affected” by this differing analysis because the administration of the Cytoxan had CLEARLY gotten my lungs better when the traditional form of treatment for BOOP (i.e., 60 MGs of Prednisone for 1 year) was ineffective and caused me so many other serious systematic medical problems for which I had to be hospitalized. But not knowing exactly how far I had recovered from the BOOP, especially since it can be chronic and come back, as it has now in 2013, I wanted at least one more infusion of Cytoxan but the NYC doctors concurred in their opposition given the new Mt. Sinai Hospital Pathology Report, my obvious improvement from the Cytoxan and with all due consideration and respect for the potential toxicity of the Cytoxan such that giving me any more than just the right amount would be increasing the risk of systemic harm to my body.

Let me put it this way: You know you have a complicated medical problem when you engage very smart and well-intended physicians into a discussion where you are essentially begging them to give you MORE chemotherapy because you want to make sure you fully treat a very dangerous lung condition so that it doesn’t come back. They listened, I listened, but in the end it was their decision and my breathing was SO MUCH BETTER that I mentally embraced their decision and start focusing on my Crohn’s Disease small bowel obstruction. At that exact moment in time, the episode of BOOP, or whatever it was, was over in my mind and I was transferred to the floor at Mt. Sinai Hospital which was exclusively for Crohn’s, Colitis and Inflammatory Bowel Disease (“IBD”) patients. Even without the actual physical transfer from a pulmonary floor at Mt. Sinai Hospital to a Crohn’s Disease/Inflammatory Bowel Disease floor, I had to make that “transition” in my mind because now I had to contend with some very serious Crohn’s Disease issues and I wasn’t going to be given any sympathy just because I had just somehow navigated my way out of a very dangerous Lung Condition thanks to the knowledge, talent, experience and sheer determination of three (3) very smart physicians. This was approximately November, 2011.

Medical Background Epilogue

The BOOP and my Lungs were manageable although the capacity of my lungs was clearly limited or damaged either by the episode of BOOP, cumulative damage from the BOOP and/or damage from taking the chemotherapy drug, Cytoxan. The Crohn’s Disease problems got much worse and I was still going medication “commando” as there was no medication I could take to treat the Crohn’s now that all Biologics were off the table for me. Long story short, after MANY diagnostic tests in close consultation with my NYC Crohn’s doctor, we found a new Crohn’s Disease surgeon who looked at all the tests, was not at all intimidated by the complexity of my case and he used the tests to map out a surgical strategy that would judiciously treat the diseased parts of my small bowel and also excise all adhesions that were adding to the small bowel obstructions. It, just like the BOOP episode, was VERY complicated but this new surgeon operated on me in June, 2012, when I stayed at Mt. Sinai Hospital for Seventeen (17) days. Most people have 21 feet or so of their small bowel but after this last 2012 surgery, I now have only 6 ½ feet. That “short bowel syndrome,” in and of itself, causes many absorption and lifestyle challenges but at least I can still eat and I don’t have any sort of stoma (or “bag” for those unfamiliar with the technical terms for such things.)

My NYC Crohn’s doctor thinks the Crohn’s Disease issues may have been exacerbated by the 3-5 monthly infusions of the Cytoxan I took to “beat the BOOP” but he doesn’t think it caused it. We’ll never know. However, two (2) casualties as a result of taking the Cytoxan are that my Testosterone Levels decreased to the point where they were almost microscopic. I had to take Testosterone supplements to help boost it back up as I was experiencing EXTREME FATIGUE and a variety of “man problems.” It is still VERY LOW and barely falls within the “range” of where it should be whenever I get a blood test but all “man issues” are no longer problems. I can’t afford the Testosterone Supplement so for now, and the foreseeable future, that is my reality. The other casualty is that my stamina when trying to merely walk on a treadmill or taking a walk in the sun has been greatly diminished. In fact, a few months ago I tried walking very slowly on a treadmill and I passed out and that brings us back to the road to my Nightmare March 26, 2013 Emergency Room Experience at a New Jersey Hospital as: “The BOOP is back and it’s stone cold sober as a matter of fact.”

MAW PPP Dec 21 2012

→ 7 Comments

Posted in "B.O.O.P.", Anti-TNF Agents, Auto-Immune Disease, Biologics, Bronchiolitis Obliterans with Organizing Pneumonia, Chemotherapy, Cimzia, Crohn's, Crohn's Disease, Cytoxan, Emergency Room, Humira, IBD, Inflammatory Bowel Disease, oncology, Patient Advocacy, Patient Consumers, Patient Engagement, Perspective, Pharma, Prednisone, Remicade, Severe Crohn's Disease

Tagged "B.O.O.P.", Abbott Laboratories, adalimumab, Anti-TNF, Anti-TNF Agents, autoimmune disease, Bacterial Sepsis, Black Box Warning Label, Bronchiolitis Obliterans with Organizing Pneumonia, Bruce Springsteen, certolizumab pegol, Chemotherapy, Cimzia, Crohn's, Crohn's Disease, Cyclophosphamide, Cytoxan, emergency room, er, FDA, Histoplasmosis, Humira, IBD, Inflammatory Bowel Disease, infliximab, Janssen Biotech, Jerry Seinfeld, Lung Fungal Infections, lymphoma, Michael A. Weiss, Pharma, Prednisone, Remicade, t-cell disorders, TNF Inhibitors, UCB, US Food and Drug Administration

PITY does not breed Crohn’s Disease, Colitis or IBD Global Awareness

Posted on January 20, 2013 | 2 Comments

Oh no, a Public Bathroom Stall – CCFA’s “Escape The Stall” Campaign

The above picture is from the latest well-intended NEW Crohn’s Disease, Colitis and Inflammatory Bowel Disease (“IBD”) Mainstream Awareness Campaign from the Crohn’s & Colitis Foundation of America (the “CCFA”) which has me SO disappointed, annoyed, angry and insulted that I’m up at 4 AM on a Sunday morning when I should be resting getting ready for the New England Patriots-Baltimore Ravens AFC Championship Game, given that I am a life-long Pats fan and I just turned 50 last week. But some, not many things, are more important to me than the New England Patriots (my fandom is actually a way in which I deal with the frustrations and limitations of being disabled by Crohn’s Disease after 30 years battling the beast) and one of them is how Crohn’s Disease is perceived by the WORLD. This is why I chose the above picture from the CCFA website depicting the possibility that a Clown can have IBD because it completes the bizarre circular reasoning of the CCFA and makes this DEBACLE of an attempt to educate the mainstream into a complete f’n joke. Sorry, I call it, as I see it. It is also an insult to the MANY Crohn’s, Colitis and IBD patients who suffer endlessly and somehow persevere despite seemingly never-ending obstacles that seem to only graduate to the worst possible case scenario.

“Who’s gonna do it? You? You, Lt. Weinburg?”

So who really represents these Crohn’s, Colitis and IBD patients with key research and funding organizations now that we have CONFIRMED the CCFA is ill-equipped to devise an accurate Global Mainstream Awareness Campaign? In answering that question, I am forced to quote a classic scene from the memorable 1992 movie directed by Rob Reiner, “A Few Good Men:”

Col. Jessep (Jack Nicholson) : *You want answers?*
Kaffee (Tom Cruise): *I want the truth!*
Col. Jessep: *You can’t handle the truth!*
[pauses]
Col. Jessep: Son, we live in a world that has walls, and those walls have to be guarded by men with guns. Who’s gonna do it? You? You, Lt. Weinburg? (played by the incomparable Kevin Pollak) I have a greater responsibility than you could possibly fathom. You weep for Santiago, and you curse the Marines. You have that luxury. You have the luxury of not knowing what I know. That Santiago’s death, while tragic, probably saved lives. And my existence, while grotesque and incomprehensible to you, saves lives. You don’t want the truth because deep down in places you don’t talk about at parties, you want me on that wall, you need me on that wall. We use words like honor, code, loyalty. We use these words as the backbone of a life spent defending something. You use them as a punch line. I have neither the time nor the inclination to explain myself to a man who rises and sleeps under the blanket of the very freedom that I provide, and then questions the manner in which I provide it. I would rather you just said thank you, and went on your way, Otherwise, I suggest you pick up a weapon, and stand a post. Either way, I don’t give a damn what you think you are entitled to.

That’s right, Lt. Weinberg and the actor/comic/impressionist Kevin Pollack will now have to pick up the slack caused by the ineptness of the CCFA.

My Sister being thankful things are not worse – until they ALWAYS are w/ Crohn’s Disease

A funny interlude here is my true story of growing up as an adult with Severe Crohn’s Disease and having one of my loving sisters ALWAYS calling me in the hospital with the most genuine concern for my well-being but always saying something to the effect of, “Thank God, things could be worse, you could need surgery and lose more of your intestine or you could be in the hospital for weeks.” Well, in an wicked twist of fate, despite my sister’s sweet and sincere prayers for me to get better, that “worst case scenario” would almost always occur in a matter of days. It became so frequent that whenever I was hospitalized during any 1 of the 200+ times, I would ask her to NEVER repeat those well-intended words. We laugh about it today but THAT IS Crohn’s Disease. I’ve had so many surgeries, been on so many medications and even had to go on Chemotherapy in 2011 to SAVE MY LIFE after I developed a Severe and RARE Lung Condition from a “miracle” Crohn’s Disease drug. And I’m a lucky Severe Crohn’s Disease patient as so many people aged anywhere from 5 to 90 have suffered much more than I from BOTH the disease and the so-called medications which apparently treat but don’t cure the disease.

Pity & Pubic Bathroom Stall Doors don’t motivate people to HELP

With this in mind and in my humble opinion, the CCFA has AGAIN failed MISERABLY in trying to help us Crohnies and IBDers by yet again putting the focus of their well-intended efforts on a BATHROOM STALL DOOR and using PITY to play directly into the public’s overall perception of the less serious stigmatizing aspects of these chronic, incurable, autoimmune and often VERY painful diseases which can, and do, DESTROY lives (and families) physically, mentally, psychologically, financially, professionally and socially. Healthy people want to help their fellow citizens who seriously struggle after they do all they can to fight through their respective adversity. That’s why we see the country coming together during the terrible Tornadoes, Hurricanes and Super-storm Sandy tragic Events. Does anyone think that the image of a Public Bathroom Stall Door will elicit sympathy or encouragement from people? Does anyone remotely familiar with the possible effects of Crohn’s, Colitis and IBD want a Public Bathroom Stall Door representing the severity of their experiences?

Worse, this “Escape The Stall” Slogan is an INSULT to the BRAVE people who battle these often HORRIFIC diseases EVERY DAY. To that end, and I have written this MANY times before and it is why I am launching the “Crohn’s Disease Warrior Patrol,” because I believe veteran Crohn’s, Colitis and IBD patients offer the most help and hope to current patients facing difficult flare-ups, hospitalizations and decisions about surgeries, medications and overall treatment than the CCFA can EVER DO. But the NATIONAL CCFA needs to focus on educating the mainstream public about the seriousness of these diseases of which the bathroom stall plays just one of MANY aspects.

Thank you Amy Brenneman and CCFA Local Chapters & Volunteers

Please let me preface the above, although that might have been more effective if I actually posted this paragraph before my rant above, but my issue is with the paid executives at the NATIONAL CCFA offices who are responsible for this GRAVE mistake and not with the beautifully, talented, elegant, courageous actress, Amy Brenneman, who essentially lends her formidable credibility to “front” this Cause. I am SO THANKFUL to Ms. Brenneman for lending her substantial credibility to this Cause just as I am eternally grateful to the numerous local CCFA chapter volunteers and low-paid executives around the WORLD who work tirelessly to find a cure for Crohn’s, Colitis and IBD. But when the SLOGAN for the current campaign is predicated on spreading the word in Social Media to “Escape the Stall” in an attempt to somehow convey the pain and anguish of Crohn’s, Colitis and IBD, the executives at the NATIONAL CCFA offices have demonstrated that they are out of touch with their patient population.

What does Man on the Street think about Crohn’s Disease

In my business travels when I was healthy enough to travel extensively, and even now when I am asked to speak at various Health Care Conferences, I have purposely asked numerous strangers like English-speaking intelligent taxi-drivers and engaging waiters in restaurants about Crohn’s Disease and they look at me as if to say, “I’m not sure, but isn’t that the ‘disorder” you see on TV where the women is frantically searching for a bathroom because she’s afraid she will crap in her pants on a date or at a business meeting?” WTF!!!!! If Mainstream Awareness has been the objective, doesn’t that mean that the CCFA has been FAILING for all of these years????

Crohn’s, Colitis and IBD are DEADLY SERIOUS and using PITY and hiding behind a Public Bathroom Stall Door does not make for a very effective Global Awareness Campaign

Thankfully, for some people with Crohn’s, Colitis and IBD they face only minor hindrances in their lives but for MANY or MOST it is a HORRIFIC DISEASE which can forever alter lives. It can turn frustrated but kind, compassionate doctors against patients because often they have no conclusive scientific proof from which to make a diagnosis and formulate a treatment plan so they then suspect it’s in the patient’s mind because the diagnostic tests just don’t explain the existence or severity of the patient’s pain and in turn that affects how family members view a loved one in pain who has little explanation for suffering and virtually no options for an effective treatment that doesn’t actually make the suffering worse in other parts of the body. This is just a “bonus” of these diseases and it naturally occurs until a patient is properly diagnosed and that can take months or years, in many instances. Did I mention all the other potentially horrific symptoms, side effects, treatments, pain, expenses, etc.? And the CCFA picked a Public Bathroom Stall Door to portray this seriousness? Really?

The “Crohn’s Disease Warrior Patrol”

I don’t profess to be Lt. Weinburg or Kevin Pollak but I admire the cutting-edge work Mr. Pollak is now doing in the Entertainment Business and it has inspired me to start this “Patrol” of veteran “Warrior” Crohn’s, Colitis and IBD patients sharing their knowledge and experience with current patients going through a rough time with Crohn’s, Colitis or IBD either in the hospital or at home. At its core, it’s a Hospital/Patient Visitor Ambassador Program but it will evolve into a Global Support Group powered by Health Care Social Media. From personal experience, I know that I have gained much need “Perspective” when a veteran Crohn’s/IBD “Warrior” took the time to impart some words of wisdom to me. Also, my longtime New York City Gastroenterologist Dr. Mark Chapman has also played an enormous role in helping me adjust to each new adversity thrown at me by my Crohn’s Disease. Through it all I’ve learned that veteran patients helping another patient is truly the best medicine when it comes to tricky cases of Crohn’s, Colitis and IBD. I applaud the CCFA for their intentions and efforts but I don’t like their means as I find them woefully inadequate, ineffective, poorly designed and out-of-date.

Perhaps this ridiculous CCFA campaign of “Escape the Stall” has provided me with even more impetus to spread my message of the “Crohn’s Disease Warrior Patrol” as fast as I can because Crohn’s, Colitis and IBD patients are suffering and the CCFA is not helping them/us the way they could be. Things happen for a reason and there are Lt. Weinburgs standing by to save the day for the Tom Cruises, whether they like it or not. Sometimes life calls on certain ordinary people to set into motion extraordinary things. Stay tuned.

Crohn’s Disease Warrior Patrol

@CrohnsIBDPatrol

CrohnsDiseaseWarriorPatrol@gmail.com

→ 2 Comments

Posted in Auto-Immune Disease, Bathroom Stigmas & Crohn's Disease, CCFA, chrones, chrones disease, Colitis, Crohn's, Crohn's Disease, Crohn's Disease Mainstream Awareness, Crohn's Disease Warrior Patrol, Crohnie, Crohnies, Crohnology, IBD

Tagged "A Few Good Men", "Health Care Social Media", Auto-Immune Disease, CCFA, Colitis, Crohn's, Crohn's Disease, Crohnie, Crohnies, IBD, Inflammatory Bowel Disease, Kevin Pollak

Crohn’s Disease Warrior Patrol GATHERS STEAM!!!

Posted on January 18, 2013 | 2 Comments

Thanks to a generous and talented Uncle/Graphic Designer, Stuart Fishman, above are the 3 Logos for the Crohn’s Disease Warrior Patrol (“CDWP”). We will soon be selling these T-Shirts to help Raise Awareness of the CDWP Project and to Raise some funding to move the CDWP Project along as it has literally become a nationwide Grassroots Patient Movement thanks to the “word-of-mouth” assistance from the various Health Care Social Media platforms. To that end, I anticipate having these T-shirts ready for sale in 2-3 weeks, at the latest. Don’t worry; I will get the word out. There will also be additional CDWP Logo licensed products used to help raise Awareness and Funding but it’s all a little “overwhelming” now and I must proceed methodically. But I am incredibly thankful for the support!

From southern/northern California, New York City, New York State, Connecticut, New Jersey, Maryland, Ohio, Arizona, Philadelphia, Minnesota, St. Louis, Seattle, Colorado, Cheyenne, Wyoming, Ontario, Canada and MANY points in-between, veteran Crohn’s Disease and Inflammatory Bowel Disease (“IBD”) patients have been kind enough to INSTANTLY SIGN-UP on our website to offer up ANY kind of help they can, in their geographic part of North America, to both the newly diagnosed or to patients hospitalized with these so often misunderstood, painful and difficult autoimmune diseases.

The willingness of veteran Crohn’s and IBD patients to so quickly share what they’ve learned and experienced during their respective “journeys” has been inspirational. It proves my hypothesis that: “Patients helping other Patients is the BEST Medicine.” For that, I thank you and encourage you all to tell your friends to SIGN-UP as fellow veteran “Warriors” at www.crohnsdiseasewarriorpatrol.org or at @CrohnsIBDPatrol. (Please Note: ONLY I receive these emails and tweets).

When you do SIGN-UP, it is helpful to include your contact information including locale, age, Crohn’s/IBD “situation,” etc. so I can make the most logical and effective MATCHES between veteran “Warrior” and current Crohn’s/IBD Patients In Need.

If you are a current Crohn’s Disease or IBD Patient IN NEED (or a friend or family member of a Patient IN NEED), please contact me by one of the following methods:

Tweet – @CrohnsIBDPatrol

Email – CrohnsDiseaseWarriorPatrol@gmail.com

THANKS

→ 2 Comments

Posted in 1st Diagnosed with Crohn's DIsease, Assertive Patient, Auto-Immune Disease, chrones, chrones disease, Colitis, Crohn's, Crohn's Disease, Crohn's Disease Mainstream Awareness, Crohn's Disease Warrior Patrol, Crohnie, Crohnies, Crohnology, Grassroots Patient Movement, Health Care Social Media, Hospital Patient, Hospital Patient Experience, Hospitalizations, IBD, Marketing Crohn's Disease, The Empowered Patient

Tagged "Health Care Social Media", Auto-Immune Disease, CDWP logo, CDWP t-shirts, Colitis, Crohn's, Crohn's Disease, Crohn's Disease Warrior Patrol, Crohnie, Crohnies, gastroenterology, Hospitalizations, Hospitalized Patients, IBD, Inflammatory Bowel Disease, Michael A. Weiss, Patient Ambassadors

Music is Good Medicine for Chronic Illness

Posted on October 18, 2012 | 1 Comment

“Patients like us, [Baby] we were Born to Run…to the Bathroom!”

@TravisSMcClain – Crohn’s Disease patient & Twitter Pal

Saying living with a chronic illness like Crohn’s Disease can be difficult is as mendacious as many of the 2012 Presidential political claims. In that regard, I woke up this morning with intermittent excruciating joint pains which alternated from my wrist to finger to shoulder, finally settling, in of all places, my left heel. I felt like a Senator John Edwards Voodoo Doll being pricked by former Vice President Dick Cheney. I was also battling extreme shortness of breath due to some “inflammatory” lung condition which has hospitalized me many times and even forced doctors to once put me on Chemotherapy for a few months. That sounds rather intense but Crohn’s and chronic illness have caused many strange and serious medical conditions for me over the past 30 years. But today I was supposed to hear back from a Durable Medical Equipment (“DME”) company about purchasing a Nebulizer so that I could have “breathing treatments” at home as per my compassionate Pulmonologist and thus could stay as far away from hospitals as possible. Call me crazy but expecting that Nebulizer created an almost Christmas-like atmosphere in this Jewish “Household.”

The Nebulizer

The outstanding issue and reason for the DME callback was the amount of reimbursement from my health insurer because I’m broke and I knew I’d already hit my 2012 out-of-network benefits deductible of $7,500.00 so it should have cost me very little out-of-pocket. Naturally, a polite woman from said DME company called me just as I had comfortably arranged my painful body parts on my couch, to tell me, my insurance company told her, I had not reached my 2012 out-of-network benefits deductible, so the DME folks required a credit card. Before capitulating to her, the kind DME woman gave me the very useful health insurer “reference number” so I could follow up with the brain surgeons who handle customer service at my health insurer whose name rhymes with “Moo Boss.”

I was exasperated at the level of incompetence of the 1^st-level customer service people at my health insurer, and I was desperate, so I borrowed a credit card from my Mom, who isn’t exactly on “Easy Street” at 77 years of age having to use most of her bare bones “golden years” “nest egg” to care for her 49 year-old disabled son. Because of Crohn’s Disease, that disabled son is me and I’ve been denied Social Security Disability twice and now have an attorney who is handling the Appeal but he has told me I must wait another 12-14 months for a Court Date for said Appeal. Money is not flowing in this “Household,” so the Christmas-like atmosphere faded fast, once credit card reality set in.

Dealing with Health Insurer Moo Boss

As soon as I finished giving the DME woman my billing and mailing information, I called my health insurer and quizzed the Moo Boss customer service person about my 2012 out-of-network benefits deducible and even gave her the aforementioned DME reference number. This Moo Boss customer service person was so confused by the meticulous details that she got nervous and tossed me up to her supervisor. Moo Boss supervisor person confirmed my belief about having already met said deductible and promised to call back the DME company so that my Mom’s credit card would not be charged. I waiting 10 minutes and called myself, just to make sure. Glad I did because the DME company was getting ready to charge my Mom’s credit card as Mr. Moo Boss evidently has poor communication skills. More specifically, there was a “failure to communicate” and some inertia was required to reverse the status-quo, as it always is. I was thankfully able to do that and the Nebulizer is on its way and I will be balanced-billed for what Moo Boss doesn’t pay. Granted, my blood pressure probably rose with each phone call but in a strange way that seemed to power me through the pain of having to move off the couch to get a pen and paper to jot everything down to “protect myself” from further Moo Boss failures in communicating.

Social Security & Public Assistance

Before I could even think about enjoying my breakfast bowl of Fruit Loops and soy milk, my Social Security Disability attorney then called me to answer an SOS email I had sent him when I got frustrated the other day trying to apply online for “Public Assistance” as I have no means of paying for ANYTHING as I wait the 12-14 months until I hopefully get declared “Disabled” and start receiving Social Security Disability benefits (along with a separate check dating back to when I first became disabled.) You see, being trained as an attorney and being detail-oriented, I couldn’t complete the online Public Assistance application because it was asking for the financial income and assets of my “Household.” If the “Household” definition included my Mom, I would be denied ALL Public Assistance benefits because even her meager monthly Social Security benefits would catapult us out of Mr. Mitt Romney’s “47% of Americans” who are apparently mooching off the government when they should be “movin’ on up, to the east side, to that deluxe apartment, in the sky….”

My lovely Mom

Seriously, I thought it was unfair to be required to include my widowed Mom’s monthly income in assessing MY need for Public Assistance because we are separate adults and it is MY Crohn’s Disease which is disabling ME. In any event, because she is my Mom and a compassionate and generous person, her monthly Social Security checks are already being eaten up when she pays for my monthly prescription drugs, frequent hospitalizations and unpredictable doctor visits. She is doing all she can but that helps me merely SURVIVE and her much appreciated sacrifice comes at the harsh cost of compromising her own quality of life.

It makes me sad to think of our situation because in addition to being my Mom’s adult dependent due to my medical disability, the overall result is that we are also BOTH completely financially handicapped. Therefore, I think it is unjust to include her financials in assessing my need for assistance (and thus counted toward the determination of my “Household”) when she has no legal obligation to support me but can’t imagine me living in a cardboard box with no private bathroom! In summary, I don’t want to misrepresent our situation or run afoul of any laws pertaining to how these Public Assistance eligibility tests are determined. Accordingly, I was hoping my attorney could clarify things so that I could quickly apply for even Food Stamps given that I have absolutely no income and only exorbitant medical bills.

My Smart Attorney

My attorney is a smart, experienced and compassionate man but he told me that as long as my Mom helped me with “extravagant” things such as food, shelter and the Sunday night opportunity to entertain myself watching “The Good Wife” on her television, she was part of my “Household” and I thus would not qualify for ANY Public Assistance. I countered with the logic that this government policy made no sense because, as a result, my disability would be affecting, and possibly ruining, two lives, instead of one. He told me I was crazy to think that logic would be persuasive with bureaucrats.

I asked him what to do for sustenance and minimum amounts of money to pay for my prescription drugs and he told me I’d have to wait 12-14 months for any government assistance. We bantered back and forth for a few minutes sounding like an old “Abbot and Costello” routine, with me making clear my frustration was with the “system” and not with him. He wished me good health and good luck until the next time we spoke. When I hung up the phone, it hit me that he could not help me with my immediate need to qualify for some type of Public Assistance. I realized that I’d have to use my legal talents, when I am healthy enough to do so, to find some case law or unique interpretation regarding the definition of a “Household” within the context of applying for Public Assistance in my state. I will do that, but with impending Cataract Surgery next Thursday and me doing everything I can to stay out of the hospital for my breathing difficulties and severe joint pain, I don’t know when that will be. Said Christmas atmosphere was now, all but gone.

The Boss wakes me up

Before I tried to organize my painful body parts to move off the couch, as one, toward the kitchen to my waiting “Breakfast of Champions,” I actually felt the weight of the frustration and disappointment I had experienced, all, by 10:00 AM. At least I had the Marines beat by experiencing more disappointment before breakfast than most people go through in a week! I wanted to cry but that train left the station years ago when liquid tears actually came out of my eyes when I got so sad. I’ve just become too good at dealing with adversity and tears don’t come easy. So with nothing else to do but head toward the kitchen and possibly more disappointment if my Mom had purchased the “store brand” of Fruit Loops, I turned on the television. For some reason, getting immersed in someone else’s fictitious life helps me escape mine and I imagine that’s why I turned on the television at that precise moment. Evidently the channels had been surfed furiously before my Mom shut the television last night (i.e., she fell asleep on the remote control and caused many buttons to be depressed simultaneously) and when the TV turned on, the “Palladia” Music Channel was playing. I was about to channel surf myself until I saw, what I thought I had heard, namely, Bruce Springsteen and The E Street Band playing Live before a crowd in New York City. It was the 30^th Anniversary of “Born to Run” and if my memory was accurate, I remembered I had attended that show with my best friend.

Mighty Max Weinberg keeps me up!

The song “Land of Hope and Dreams” was playing and my Mom was simultaneously calling me into the kitchen to eat breakfast but watching Bruce Springsteen was mesmerizing and trying to keep pace with the Mighty Max Weinberg on drums proved impossible. Yet, the task had “my body smiling” and I was quickly forgetting about Moo Boss and the Public Assistance definition of a “Household” as I tried to anticipate the next song. It was “American Skin” [41 Shots] and I love that song so I just stayed on the couch and let the music soothe my soul. It sounds like a cliche but that’s exactly what The E Street Band did to me this morning. I would have never thought that watching a cool and beautifully sounding concert at 10:00 AM would suffocate a BAD Crohn’s day but that’s what music can do. The great Brian Wilson of Beach Boy fame has been right all along, “Add Some Music to Your Day.” Then I heard the beginnings of “Backstreets” and the joint pain seemed to go away as I tried to again keep pace with Max. Then “Darkness on the Edge of Town” affirmed what I was doing, exactly how I was doing it. It was like the Band was talking to me and making me feel like “everything’s gonna be all right” just “have a little faith.” My mind was controlling my body and I started to feel so much better that I even enjoyed “Lost in the Flood.”

Unraveling the effects of years of Chronic Illness through Music

I recorded the rest of the concert so that I could eat my breakfast while I watched. I was generally familiar with the Set List so I fast forwarded to “Jungleland” and I was so intensely thinking about the lyrics that I had created a pleasant diversion and was so far away from customer service incompetency. “Light of Day” was next and after “jammin’ with the Band” to finish the song, I literally felt as if I had enjoyed myself too much so I stopped the recording and turned off the television and tried to go back to the couch to eagerly await my Nebulizer and upcoming Cataract surgery. It’s amazing how years of battling chronic illness can condition the mind to apportion and enjoy only a certain amount of joy and happiness because it almost trains the patient to expect bad news or painful feelings just around the corner. But this morning I let music overtake me and I just went with the flow and tried to carry my new sense of calm with me as I took on the rest of the day.

Let’s just go “Racin’ in the Streets“

Unfortunately, my enlightenment was interrupted by confirmation calls from the eye surgeon and then by dunning calls from medical creditors but I would not lose sight of the fact that I had learned something significant today. Music, just like narcotic painkillers, can soothe pain and really take you away from your problems; albeit temporarily. But Music is a much healthier “medical treatment,” it’s always available, it comes in so many different forms and it’s not addictive. After a few more mundane frustrations of the day, I took my own advice and made it down to my computer and listened to my favorite song by Bruce Springsteen and The E Street Band, “Racin’ in the Streets.” The Live Extended Version is a beautiful juxtaposition of Professor Roy Bittan’s magical fingers on the piano and Mighty Max Weinberg’s “feel” for pulsating and intensifying the mood, when need be, but always in synch with the rest of the Band, and especially with the maestro piano player, Roy Bittan.

Thank you – Bruce Springsteen and The E Street Band

I’ll never forget today’s “musical medical illumination” because the way I feel when I listen to or watch members of The E Street Band use their respective individual musical talents to create this sound is simply Good Medicine.

→ 1 Comment

Posted in Auto-Immune Disease, Chronic Illness, Chronic Pain, Coping Strategies, Coping with Crohns, Crohn's, Crohn's Disease, Crohn's Disease Mainstream Awareness, Crohnie, Disability, Health Insurance, Health Insurers, Inspiration, Living w/ Chronic Illness day-to-day, Managing Chronic Illness, Managing Chronic Pain, Music as Medicine

Tagged "born to run", autoimmune disease, Bruce Springsteen, bruce springsteen and the e street band, Chemotherapy, Chronic Illness, concerts, Crohn's, Crohn's Disease, Crohnie, Crohnies, Disability, disabled, durable medical equipment, Health Insurance Companies, Health Insurers, Healthcare, IBD, Inflammatory Bowel Disease, Max Weinberg, Michael A. Weiss, Music, Racin’ in the Street, roy bittan, Social Security, the e-street band

Partnership with Patients Summit & “Humira” position

Posted on September 15, 2012 | Leave a comment

Thanks to being awarded a “Travel Scholarship” from the Society for Participatory Medicine based on my contributions to the world of Health Care Social Media, I will be attending the “Partnership with Patients Summit” in Kansas City, Missouri from Friday, Sept 21, 2012 through Sunday, September 23, 2012. I am honored and humbled by receiving such an Award and I look forward to sharing all that I see and hear by reporting about it on my Blog upon my return. I intend to bring my Flip HD Camera and trusted Tripod so that I can record daily summaries of the day’s events.

On an unrelated note, yesterday I recorded a One (1) minute Video entitled: “The Drug “Humira” – Miracle Drug or Snake Oil?” utilizing the new wonderful technology from “Vsnap.com.” Several people presently taking Humira, and getting great results with it, seemed to take offense at my characterization of Humira as “Snake Oil” or as an ineffective drug for Crohn’s Disease. Granted, the title of the video is rather “dramatic,” but the content of the video is simply MY opinion based on MY experiences and on the experiences of MANY Crohn’s Patients who have sought me out to commiserate.

MY issues with Humira are numerous, especially in light of the drug being approved last week by The European Union for treatment of Severe Crohn’s Disease. For the purposes of simplicity, I am listing some of them below. That said, I acknowledge that Humira DOES WORK in treating Crohn’s Disease BUT I am concerned that longer term use of the drug (such as in MY case) will reveal many more negative outcomes and dangerous side effects than are reflected in the sample sizes for which Abbott Laboratories, the manufacturer of Humira, received global approval.

As I was one of the early patients taking Anti-TNF Agent drugs who had to quickly “graduate” from Remicade to Humira and then to Cimzia, I am concerned that the almost fatal (and often on-going) side effects I experienced might occur more frequently than first thought, particularly as these drugs are taken by patients for longer periods of time. Accordingly, please understand that I write and record about this Humira issue because I want to keep Researchers and Pharmaceutical Companies on their toes, as the pressing need of patients doesn’t always align up with the profit-motives of Pharmaceutical Companies. Moreover, I feel compelled to speak out due to the misleading Humira television commercials Abbott Laboratories targets at a captive patient audience desperate to get their lives back from these formidable autoimmune diseases. Some would say I am a cynic but others would conclude I am trying to be realistic. Regardless, please trust that, in the immortal words of Singer/Songwriter Elvis Costello, “My Aim is True.”

How could ONE (1) Drug such as Humira claim to be “THE” effective Treatment drug in SIX (6) Different autoimmune serious diseases such as: Moderate to Severe Rheumatoid Arthritis; Moderate to Severe Chronic Plaque Psoriasis; Moderate to Severe Crohn’s Disease; Ankylosing Spondylitis; Psoriatic Arthritis; and Moderate to Severe Polyarticular Juvenile Idiopathic Arthritis ?
The drug is marketed in the United States to patients via television commercials which focus on “regaining back a certain lifestyle” very much like the manner in which “Erectile Dysfunction” drugs are marketed. The very serious medical disclaimers are read aloud in a quick and monotone fashion, which I imagine is legally sufficient, but I contend is morally INSUFFICIENT because the commercial then focuses the patient’s eye on the VIDEO “wants” of patients (myself included) instead of the patient’s NEEDS. Given the increasing number of ineffective usages of Humira (I am extrapolating based on the overall increasing number of patients using Humira) and the severity of the side effect cases, shouldn’t these television advertisements be regulated more carefully so that they better represent the risks associated with taking Humira?
Why is Humira advertised DIRECTLY to patients? As a Crohn’s Disease patient with NO CHOICE, having run out of drugs to take to treat my Crohn’s and keep me out of the hospital, and thus desperate for a cure or even a treatment that gives me back some semblance of a normal lifestyle, an argument can be made that Abbott Laboratories, the manufacturers of Humira, are manipulating a captive audience. When you go and ask your doctor to put you on Humira based on seeing these television commercials, it is likely you won’t “hear” the medical disclaimers being carefully told to you by your doctor because all you can “see” is your old “active self” doing the things you love, when you want to do them. I have a problem with this type of manipulation when the outcome “COULD” be the exact opposite or even worse.
Since Humira DOES WORK in MANY CROHN’S DISEASE CASES, it pains me to write about these issues and in doing so possibly dashing the hopes of these hopeful patients, but someone needs to speak out because I know MANY Crohn’s Disease doctors who are very frustrated and disappointed with both the long-term success of these Anti-TNF Agent drugs and their intense and pervasive side effects. As for the patients taking Humira now, or considering doing so because they have no choice, they should simply view my comments as a Cautionary Tale; nothing more; nothing less. But because Crohn’s Disease is not a “sexy” disease, I am so worried that research money will not be adequate to proceed further and therefore patients will have to settle for treatment drugs based on Anti-TNF Agent ideology. I hope my fellow Crohn’s Disease patients understand my intentions in this regard.

What Happened to Me b/c of Humira

If you’ve read my Blog or followed me on Twitter, you are probably familiar with what happened to me after taking Humira and Cimzia for a significant period of time. In short, they worked for a while but then I developed severe Respiratory and severe Joint Pain side effects which forced me to stop taking them. A few months later I began to come down with intermittent fevers of 105 often accompanied by Bronchitis or Pneumonia. Eventually, I became so sick that I had to be hospitalized for what the doctors then thought was drug-resistant Pneumonia. After several hospitalizations, I developed the additional symptom of severe Shortness of Breath and that prompted a CT Scan. The CT Scan showed accumulated severe damage to my lungs which the Thoracic Surgeon thought was consistent with Lung Cancer even though I have been a non-smoker my entire life of 49 years. They performed a surgical biopsy because they wanted to obtain samples of my lung while “I was still able to breathe on my own,” that’s how grave a situation they thought I was in. Thankfully, I did not have Lung Cancer but instead had an often fatal Lung Condition called Bronchiolitis Obliterans with Organizing Pneumonia or “BOOP.”

My Crohn’s doctors recognized the connection of the BOOP to the Anti-TNF Agent drugs Humira and Cimzia and I began treatment for the BOOP with 60 mgs of Prednisone daily with the intent to eventually taper down over the course of ONE (1) year. That is the standard, and ONLY successful, treatment for BOOP. However, after 4 months or so, I still had severe shortness of breath and had gained 55 pounds. My Crohn’s doctor discontinued the Prednisone and, after consulting with several other doctors, put me on the Chemotherapy drug, Cytoxan. The Cytoxan worked on the BOOP after a few monthly infusions but then my Crohn’s Disease started to act up after being in remission for several years. A few months later my Crohn’s became so active I was forced to have my 20^th extensive intestional surgery to address it. I was in the hospital for 17 days and in addition to the Crohn’s surgery, I had to deal with several other SERIOUS complications from the treatment for BOOP, which resulted from the Anti-TNF Agent drugs (e.g. Heart and Testosterone issues).

Since taking the Anti-TNF Agent drugs, I’ve also noticed that run-of-the-mill Seasonal Allergies seem to trigger such an exaggerated immune system response that they CRIPPLE ME. That might sound strange emanating from typical watery eyes, sinus pain and the sniffles but I get so lethargic it is as if I’m in the 14th round of a 15th round Boxing Match with boxing legend Mike Tyson and I am doing all I can just to stand on my two (2) feet. Additionally, this lethargic feeling is often accompanied by Migraine Headaches so severe I can’t move an inch once I find a spot in the bedroom where I achieve total darkness and quiet. I experienced much less severe versions of these symptoms once I was diagnosed with Crohn’s Disease but after I began taking Remicade, Humira and then Cimzia, these unpredictable “episodes” became appreciably worse and ultimately, Disabling.

Again, mine is a cautionary tale but I’m not that lucky or unlucky to be that 1 in 10,000 or so patients who gets BOOP from Humira. I have had Crohn’s Disease for almost 30 years and I can honestly say that my illness is MUCH MORE PERVASIVE since taking the Anti-TNF Agent drugs. It’s as if I made a deal with the devil to get Five (5) good years at the expense of a lifetime of bizarre, painful, disabling and increasingly serious and expensive side effects. There you have it. I hope you do GREAT on Humira. But if you run into problems, please feel free to contact me, after 1^st contacting your doctor. Good health to all.

→ Leave a comment

Posted in "B.O.O.P.", "Confessions of a Professional Hospital Patient", Anti-TNF Agents, Auto-Immune Disease, Bronchiolitis Obliterans with Organizing Pneumonia, chrones, chrones disease, Crohn's, Crohn's Disease, Crohnie, Crohnies, Humira, Partnership with Patients Summit, Society for Participatory Medicine

Tagged "Confessions of a Professional Hospital Patient", Abbott Laboratories, Ankylosing Spondylitis, Anti-TNF Agents, Auto-Immune Disease, BOOP, Cimzia, Crohn's, Crohn's Disease, Humira, Juvenile Idiopathic Arthritis, Plague Psoriasis, Psoriatic Arthritis, Remicade, Respiratory Conditions, Rheumatoid Arthritis, Side Effects, vsnap

If Crohn’s Disease don’t getcha, the drugs or the side effects will

Posted on September 6, 2012 | 18 Comments

Recently, I tweeted via @HospitalPatient:

Battling Crohn’s Disease is like trying 2 survive “The Perfect Storm” in a Raft. If the Disease don’t getcha’, the drugs or the side effects will!

The Tweet was re-tweeted by MANY people so I guess I accidentally stumbled into explaining what it feels like to live with, and manage, a chronic illness like Crohn’s Disease. More importantly, this Tweet can be true of so many chronic and autoimmune illnesses. But when you LOOK “okay” or “more than okay,” healthy people are “suspect.” They may not say this at dinner when you have a pleasant evening as friends or as “friends of friends,” but they damn sure say it to their spouse before going to sleep and reviewing the evening’s events as I know I would, if I weren’t intimately familiar with Crohn’s Disease for almost thirty (30) years. More specifically, they might ask: “How could someone so smart and seemingly healthy-looking have so many medical problems?”

I can’t speak for the many folks who battle other autoimmune chronic illnesses but with Crohn’s Disease and other “Inflammatory Bowel Diseases” (i.e. “IBD”), the progression from misdiagnosis to proper diagnosis to trying to manage it goes something like this based on MY personal experiences (and please pardon the “Vertical Bullet Points” but I think the progression of the Disease is more easily understood this way):

20 years of age – You suddenly have severe and debilitating abdominal cramping, extreme and inexplicable lethargy and crippling knee pain coupled with doubts from loved ones who think you’re a hypochondriac despite you always being an energetic and insatiable athlete. In college, these symptoms were synonymous with proud hangovers after memorable nights but for some reason you were always in the bathroom longer than everyone else. The cramping was also so intense it brought tears to your eyes as you prayed for it to stop. You switched to Vodka ‘cause it’s clear and uncomplicated, thinking that’d do the trick. Ergo, the need for Graduate School.
A few misdiagnoses by well-intended local doctors accompanied by painful experiments with various antibiotics only make the aforementioned symptoms worse. Colds turn into Bronchitis more quickly and you become increasingly familiar with bathrooms and Health Insurance Claims forms.
The Journey to the Road to Proper Diagnosis might include a bizarre reaction to having all four (4) Wisdom Teeth pulled at one time. Sure, your mouth blows up for a few days afterwards but when this continues to happen for 6 months after the dental surgery, there’s something wrong. Seasonal allergies begin to make you so weak that you fall asleep during Sunday Family Dinner. Your Dad yells at you for having bad manners but his words come out in slow motion because you are so “out of it.” You try every possible over-the-counter allergy medication but nothing seems to work like it does for your friends or how it’s supposed to on the television commercials. All you want to do is sleep and crawl into the fetal position to battle the abdominal cramps and repeat trips to the bathroom.
Some world renown expert suggests putting you in a hyperbaric chamber to recover from the dental surgery but everyone in your family thinks he’s nuts. You’re beginning to feel ostracized from those you love because no one seems to understand the physical pain you are in. You learn how to spell “G-A-S-T-R-O-E-N-T-E-R-O-L-O-G-I-S-T.” But he or she diagnoses you with what is tantamount to a “bad stomach” or “IBS,” Irritable Bowel Syndrome. Still, your symptoms don’t change.
24 years of age - Trying to brush off what those around you refer to as “psychological,” you begin your career at some low-level office job. One day they celebrate a colleague’s birthday with Flavored Popcorn. You indulge even though popcorn doesn’t exactly “agree with you.” 30 minutes later the intense abdominal cramps start and this time they are increasing in intensity almost as if you are in child labor. You go to the office bathroom so no one sees you grimace in pain as you try to manage the cramps which now make you feel like your stomach might literally explode.
Everything is foggy and you are in an ambulance on the way to a local hospital. Someone at your job found you passed out on the bathroom floor. The hospital admits you and loads you up on drugs to dull the pain. Your family rushes to your aid feeling terrible that it wasn’t psychological after all.
After numerous painful and awkward diagnostic tests, the Gastroenterologist tells you and your Mom that you have a chronic, autoimmune and incurable digestive illness called “Crohn’s Disease.” He gives you a pamphlet from the “Crohn’s & Colitis Foundation” which explains the symptoms. You read the list aloud and it’s like someone summarized your last year or so and called it “Crohn’s Disease.” At first, it’s obviously bad news but strangely it becomes incredibly validating because when your family reads it, they no longer see you as the “Complainer.” They see you as a young adult who now suffers from what could be a devastating disease. The good news is that Crohn’s is a “broad spectrum” disease so things may not be so bad.
25 years of age – 1988 – Your Mom gets you an appointment with “the best of the best” doctors who specialize in Crohn’s Disease. He becomes your doctor for the next 30 years. At first, he does whatever he could to stave off surgery but your “type” of Crohn’s Disease is “obstructive” and aggressive. After numerous hospitalizations for intravenous medications, you soon require surgery to alleviate a life-threatening small bowel obstruction. What about the broad spectrum? For you, it was a broad spectrum of bullshit.
1989 – In the early years with the disease, you go to business and law school but the first year of law school includes several hospitalizations and three (3) more surgeries. The Dean calls you personally to respectfully ask you to take the year off to focus on your health. Besides, you can’t pass the 1^st year of law school without formally listening to the class lectures. You ask for the cassettes. The Dean is silent. You do very well in law school and upon graduation you receive the 1^st “Dean’s Award” for Unique and Outstanding contributions to the school and the student community.
29 years of age – 1992 – You start to work and advance in your career but it seems that every step forward is accompanied by 3 steps back due to more hospitalizations and more surgeries. You only lose inches of small bowel during each surgery but with Crohn’s Disease, surgery begets more surgery. Surgery also causes scar tissue or “adhesions” and eventually they grow to block your small bowel and you require even more surgery to fix this “mechanical” byproduct from a prior surgery. The hospitalizations and surgeries start to pile up as do the co-payments. Doing your annual tax return becomes a royal pain in the ass.
You form unique close friendships because you learn so much from what your friends try to do for you, when you can’t do for yourself. By example, you learn how to be a great friend. It takes a while to sink in, but you realize you’re lucky, but not in a materialistic manner. For you, friendships are the currency of life. You become wise as the disease is simultaneously making you poor. Employment decisions are increasingly influenced by the healthcare coverage offered.
36 years of age – 1999 – You try to keep up athletically but your good intentions of shaping up wind up necessitating spine fusion surgery to repair a ruptured disc which is painfully misdiagnosed for six (6) months. Again, many around you doubt your pain while lazy doctors toss your “negative” MRI films on the floor with proclamations that you are “making it up” to seek attention and drugs. You cry at their insensitivity but it doesn’t stop you from getting answers, for such stifling back pain cannot be normal. Sure enough, two (2) “discograms” confirm a ruptured disc and spine-fusion is the ONLY answer. Numerous abdominal surgeries have made your back weak and Crohn’s has again caused expensive misery. However, it’s also validation once again and now you know to NEVER doubt your body because you simply can’t ever underestimate the reach of what will be your life-long nemesis, Crohn’s Disease.
1999 – 2001 - Your health insurance company only covers back surgeries emanating from MRI diagnoses; they view discograms as antiquated despite their sole existence to diagnose what MRI’s can’t. Your folks float you the money for the back surgery and you appeal the health insurance company’s decision. You lose; you appeal again. You finally win and get awarded attorney’s fees. You write a Book to help others learn from your experiences called, “Confessions of a Professional Hospital Patient.” It gets you on NBC’s “Today Show.” You date your physical therapist. Life is returning to normal.
Your trusted Crohn’s Disease doctor starts trying varies medications called “Biologics” to slow the progress of your disease and each comes with side effects that would scare Dr. Kevorkian. The cramping, myriad of bathroom issues and extreme lethargy goes away but soon anaphylactic drug reactions occur, stifling joint pain comes on like the randomness of a Voodoo Doll being pricked by the driver you accidentally cut off on the 405 out in Los Angeles. Yes, your Crohn’s Disease is in check, but you begin to come down with increasingly serious cases of Bronchitis and Pneumonia. You are hospitalized so many times, for so many things, you must chronicle it all in a Word document because no one would ever believe you without specific dates and details.
You work for yourself because no employer would understand and accept the randomness and pervasive effects of this chronic “digestive” disease. The autoimmune aspects become more and more expansive and unpredictable as you age. Due to the help of friends and family, you have some success and get back into the fast lane of merely trying to reach your professional potential. You make Movies and practice Entertainment Law and fly back and forth between New Jersey and Los Angeles. Life is good. You remember what a former girlfriend told you and try to live by it: “Michael, your Crohn’s Disease will never come between us; but how you handle it will.”
2005 – You move to Los Angeles, California, in part to more quickly pursue your professional potential for fear of being stymied at any moment by your disease, but also to prove to yourself that you can be independent of the disease, doctors and hospitals you grew accustomed to in New York and New Jersey. It works for a while and Santa Monica, CA is heaven. You meet some new “old friends.” The hospitalizations still occur but they seem to be caused more by disease complications and side effects from treatment medications than by the disease itself. For most people, that would be a bummer. For you, it’s a vacation.
2008 - Life marches on and soon your Dad passes away. You take solace in the fact that at least he saw you happy when he came out to visit with your Mom and rode around Los Angeles with you in a convertible smiling and retelling stories about the last time he was out in “Cali” just prior to being drafted for the Korean War. You head back to New Jersey to mourn his death and celebrate his life, but returning to Santa Monica, CA after the “Shiva” process starts a downward disease progression that will change your life, yet again.
You aren’t even sure it is safe to get on the flight back to Los Angeles because the pain in your gut is so severe but you figure it’s just the mourning for the passing of your Dad. You make it back to Santa Monica, CA and unbeknownst to you; your small bowel is slowly being strangulated by some surgical material from a prior abdominal incisional hernia surgery. You call your West Coast Crohn’s doctor and make an appointment for the next day but you half-kidding tell him you may not make it through the night. It’s probably a overly dramatic statement but after so many years of doing battle, you’d come to know your adversary like veteran top-ranked tennis pros facing off against each other for the 10^th time at the US Open in Flushing Meadows, NY.
At 3 AM you wake up and feel like Marlon Brando’s “Vito Corleone” in “The Godfather” when he rolled over and died in his vegetable patch. Your Santa Monica apartment is devoid of said vegetable patch so you settle for stumbling into some stand-up lamps and collapse. You call an ambulance but while waiting assume you perforated your intestine, the final knock-out punch from your Crohn’s Disease. You are a goner if the ambulance doesn’t arrive FAST.
45 years of age – 2008 – Not so FAST. The ambulance arrives as if it were E-ZPass on the tollbooths saving James Caan’s “Sonny Corleone” character so he could hit the accelerator and drive on through the machine gun fire to live to fight another day, perhaps in “Godfather Part Two.” But it takes two (2) major surgeries and several hospitalizations to repair your strangulated small bowel. More adhesions arise and you also begin to experience “comprehensive” effects of being on those new “Biologics” Crohn’s Disease drugs called “Anti-TNF Agents” such as Remicade, Humira and Cimzia. You try to work but you either wind up in restaurant bathrooms for ridiculous periods of time (which ironically is often acceptable in LA because some wacky colleagues think you are using the bathroom for entirely different reasons!) or you are so weak some days you can’t get out of bed. Since your work is also your social life, you have time to carve out a new path and begin sharing your experiences on various Health Care Social Media platforms to try and help others.
Just as you get accustomed to your role as a healthcare commentator, you have more to comment about as your small bowel again gets blocked by adhesions. Trying to avoid another surgery and numerous hospitalizations, you go on a “Liquids and Lollipops” diet. Your ingenuity goes only so far and you wind up driving from Santa Monica, CA to Rochester, MN to be operated on at The Mayo Clinic. It’s the summer and you think a drive across the country will do you good and also quench your desire to finally witness a harmless, picturesque tornado in the Plains that is visible from the highway but safely far away in vacant farmland. It’s called making lemonade out of lemons. The drive is beautiful but the unrelenting pain in your gut keeps you in some nice small Iowa highway-side town for three (3) days at a Best Western as the pain is so bad you can’t drive. With nothing to do but lie in bed, watch cable television and wait for Raquel Welch or Angie Dickinson to knock on your door, you feel like an old-fashioned bank robber held up in some small safe town waiting for the Sheriff to pass through. Having Crohn’s Disease will certainly let your mind wander.
2010 – There was no tornado but you’re proud you keep making the best of the situation as the drive is something you’ll never forget; so was your Six-Week stay at The Mayo Clinic. The adhesion surgery went well but you also had some other unrelated but very specific severe pain in and around your abdominal wall. Unfortunately, you came across a surgeon who thought you were nuts and he was God. He was mistaken on both counts. You didn’t flinch and eventually got treated by a Mayo Clinic Gastroenterologist while recovering from the adhesion surgery. While the doctors had the best of intentions and this other problem was palpable to the touch and visible as some sort of growth emanating from your abdomen, they wouldn’t listen to you when they diagnosed the pain as a flare-up of your Crohn’s and ordered you to begin an intensive course of intravenous steroids.
You respectfully refused because you learned a long time ago what was, and what was NOT, a direct body blow from your Crohn’s. This was surely mechanical but nobody would listen to an experienced Crohn’s Disease patient who had never been wrong about his body. You were then kicked out of The Mayo Clinic for refusing to follow their orders and treatment plan. You cried at their obstinacy but as you had done in the past, you fought back to get answers.
You flew home to New Jersey and headed back to your New York Crohn’s Doctor of 30 years, PICC line in tow. He’d figured out every nuance of your Crohn’s Disease so you were confident he and his colleagues at Mt. Sinai Hospital in New York could do everything The Mayo Clinic, for some reason, could, or would, not.
Prior to being admitted to Mt. Sinai Hospital, you received a Certified Letter from The Mayo Clinic effectively banning you from that fine medical institution FOR LIFE: “because of your actions which demonstrate a lack of trust with Mayo providers, a failure to follow a recommended treatment plan and abusive behavior toward our hospital staff.”
Your mother cried when she read that letter even through you knew you’d soon be vindicated. That said, The Mayo Clinic Banishment Letter made you feel like a “leper” and even your Crohn’s Disease had never done that. As for “abusive behavior” toward hospital staff, you were most polite and respectful except when they did not listen to you explain your symptoms. Then you became simply a frustrated hospital patient who had been hospitalized far away from home, for almost 6 weeks. What they call “abusive,” you objectively viewed as “frustrated.” Potato, Patato.
Your Mayo Clinic frustrations were corroborated the first day at Mt. Sinai Hospital when an Endoscopic test apparently not available at The Mayo Clinic confirmed that your problem was purely mechanical and was NOT at all a Crohn’s Disease flare-up. Had you followed The Mayo Clinic’s advice, you’d be substantially damaging your body with POTENT intravenous steroid drugs.
After allotting three (3) months for The Mayo Clinic adhesion surgery to heal, exploratory surgery was performed which immediately revealed a “bundle of impinged nerves” as the culprit causing the pain. The surgeon removed them from your abdomen, and the problem was solved. When you tried to convey this discovery to The Mayo Clinic in an attempt to help them, help other patients with possibly the same problem, they ignored your correspondence.
48 years of age – 2011 – It should have been a very good year especially in light of the December, 2010 surgery which had fixed the problem The Mayo Clinic had missed. But recuperation from that relatively minimally invasive surgery also involved adjusting to moving back to New Jersey to live with your Mom as your medical bills and inability to work had played your hand. Santa Monica, CA will be sorely missed but when you had to sell your car to pay for the monthly health insurance premiums, there was no looking back.
2011 was also marked by the dramatic increased effects of your compromised immune system and the side effects of having taken the Anti-TNF Agent “Miracle Drugs” for several years. While these “Biologic” drugs did enable you to have a few good and productive years in New Jersey and then in Santa Monica pursuing your dream of making movies, that life came at a price you could not afford. At first, it was only the sudden onset of excruciating joint pain but then seemingly out of nowhere you’d wake up with fevers every 2 or 3 weeks that were as high as 105. Then you were in, and out of, hospitals for bronchitis and pneumonia until your extreme shortness of breath caused a New Jersey emergency room to delve deeper.
Walking up stairs or participating in any type of strenuous activity had begun to cause such severe shortness of breath it felt like you were sucking for your next breath through a pencil-thin straw. After too many Emergency Room Trips to remember, the New Jersey ER doctors performed more invasive lung tests and suddenly you woke up in a hospital room with 8-10 doctors looking down on you. They had found numerous unidentifiable spots on your lungs and were prepping you for lung biopsy surgery. It was happening so fast it seemed surreal. You asked the thoracic surgeon about the look of urgency in everyone’s eyes and he told you that lung cancer was suspected and they needed to obtain the biopsy while you were still able to operate your lungs without mechanical assistance. That day sucked.
You had been through so many surgeries but somehow an operation on your lungs seemed to make you feel even more vulnerable. You hated waking up in the Recovery Room in pain and feeling COLD so you begged the surgeon and his team to make sure your pain and warmth were reasonable attended to. Having been briefed on all you had been through in just the past few years, everyone seemed to be on the same surgical page, but they never are, and rarely ever will be. You woke up from the surgery shivering and in severe pain. It was as if your worst nightmare had come true. The lovely nursing staff tried to help and gave you the standard pain medications but your tolerance for them had been blown up long ago. You needed the Pain Management Team but signals got crossed and you suffered like an abandoned wounded soldier for 3 days.
Once you were coherent, they told you that you thankfully did NOT have lung cancer but you had a rare, but sometimes fatal, lung condition called “Bronchiolitis Obliterans with Organizing Pneumonia” or “BOOP.” Technically, it is treatable with a year-long tapered course of the steroid drug, Prednisone, beginning at 60 MGs a day. But they hadn’t much experience treating BOOP and that was evident as you watched the 8-10 doctors debate the proper dosage of Prednisone to start you off at. They also didn’t understand how you could even acquire BOOP since it typically affected older patients and was apparently much more prevalent among coal miners! It had to be the Crohn’s Disease Anti-TNF Agent drugs because once you started them you also began experiencing severe respiratory symptoms. While you loved New Jersey and it’d be hard to find a more appreciative fan of Bruce Springsteen and The E Street Band, your BOOP treatment had to be managed by your New York Crohn’s doctor and a New York Pulmonologist who hopefully had seen this BOOP sh*tstorm several times before.
The New York doctors clearly viewed the Crohn’s drugs as the cause of the BOOP and watched you carefully as the Prednisone started to change your body. It soon became evident that you had all the side effects of Prednisone (i.e., you gained 50 pounds in 3 ½ months) but without its medical benefits as you were still struggling to breathe like Redd Foxx running The Boston Marathon at 70 years of age. Your continuing breathing issues also caused more pneumonia episodes and more hospitalizations and if you had gained another pound from the Prednisone your body might have exploded. Accordingly, the NY doctors convened and abandoned the traditional Prednisone BOOP treatment for an experimental one involving the Chemotherapy Drug, Cytoxan. After a few monthly infusions of Cytoxan, the BOOP began to clear. Again, you were “lucky.”
The Cytoxan was working miracles on the BOOP but it was also causing your Crohn’s Disease to flare-up. You were fighting battles on so many fronts not to mention the barrage of medical bills, dunning notices, collection calls and disability paperwork. Your dreams of making movies and finding a smart, cool, beautiful woman had to be placed on hold as you tried to devise a mindset to survive the avalanche of one medical adversity after another. But when you think about it, it was all caused by your Crohn’s Disease, in one way or another. “If the Thunder don’t get ya’, then the Lightning will.”
The late 2011/early 2012 Crohn’s flare-ups resulted in a few hospitalizations but nothing appeared prominently in the diagnostic tests. However, you couldn’t leave your house due to the “broad spectrum” of Crohn’s Disease symptoms and the severe pain you experienced on a daily basis. That “broad spectrum” phrase gives - and it takes. Finally, in the spring of 2012 and only at the age of 49, your long-trusted Crohn’s doctor ordered a basic GI Series and it revealed that you had BIG problems in your small bowel. What was clearly evident to the human eye from this test were a few Strictures (i.e., adhesions causing partial obstructions in the small bowel) and a red-hot Crohn’s Disease flare-up. As it turned out, the fancy “cutting-edge” MRI/CT Enterography tests took too broad of a perspective to identify the specifics. Truth be told, it was a New Jersey radiologist who suggested that you undergo a Small Bowel GI Series for closer examination. You were initially told such tests take too much patient time and are thus no longer cost-effective for most Radiology Facilities but you again “got lucky” when this New Jersey Radiologist agreed to perform the GI Series. Nice guy, he was probably a Bruce Springsteen fan.
Through your persistence and with the help of some very compassionate and smart doctors, you finally got some answers but they required the most serious Crohn’s Disease surgery you’d have to-date. You were also told it would be hard to find a surgeon willing to tackle such a complicated gut. Strangely, it didn’t take long to find that surgeon as you got “lucky” again. Then, on June 28, 2012, after 17 days at Mt. Sinai Hospital, you were released after undergoing successful surgery during which numerous adhesions were lanced to simply access your intestines, several Strictures were repaired via a few Strictureplasties and your small bowel was Resected at the area of the inflamed Crohn’s Disease flareup.
September, 2012 – As you recuperate and try to get re-acclimated to your new plumbing, you go for a routine eye examination and learn you must have your second Cataract Surgery, this time on your right eye. This is such a classic Crohn’s Disease complication that it’s even published in the “What to possibly expect with Crohn’s Disease” pamphlet. That should be no problem, you’ll eventually get to it. There’s several more complications from the Surgery, the BOOP, the Prednisone and the Cytoxan but the big question of the moment is whether or not to take a different chemotherapy drug (i.e., “6MP”) as “preventative medication” to keep you and your Crohn’s Disease away from the operating table? Since it’s the only Crohn’s Disease drug you have not taken, it’s the only one you can take now. But you have to wonder: Did the Prednisone or Cytoxan you took to successfully treat the BOOP cause the Strictures and Crohn’s Disease flare-up which required the extensive June, 2012 surgery? (Keep in mind that the BOOP occurred as a side effect from years of taking the Crohn’s Disease Anti-TNF Agent drugs, Humira and Cimzia.)
If you think the answer is “Yes,” then why take the 6MP? After all, there seems to always be a steep price to pay no matter what you do or take regarding Severe Crohn’s Disease. And if your time with Crohn’s Disease has proved anything: “If the Disease don’t getcha’, the drugs or the side effects will!

→ 18 Comments

Posted in "B.O.O.P.", "Confessions of a Professional Hospital Patient", Anti-TNF Agents, Auto-Immune Disease, Bronchiolitis Obliterans with Organizing Pneumonia, chrones, chrones disease, Chronic Illness, Colitis, Coping with Crohns, Crohn's, Crohn's Disease, Crohnie, Crohnies, Humira, IBD, Managing Chronic Illness

Tagged "B.O.O.P.", "Confessions of a Professional Hospital Patient", "Health Care Social Media", Anti-TNF Agents, autoimmune disease, biologics, Chemo, Chemotherapy, Chronic Illness, Cimzia, Colitis, Crohn's, Crohn's Disease, Crohnie, Crohnies, Humira, IBD, IBS, Inflammatory Bowel Disease, Irritable Bowel Syndrome, Michael A. Weiss, Prednisone, Remicade, Small Bowel, spoonie, spoonies

What’s the best thing about Crohn’s Disease? Crohnology.com

Posted on August 16, 2012 | 1 Comment

The Strangeness of Crohn’s Disease

Like many other chronic illnesses, Crohn’s Disease can be so pervasive that besides the obvious medical discomfort, pain, inconvenience and occasional embarrassment, it can also have devastating psychological, emotional, professional, social, familial and financial effects. Because it is a “broad spectrum” disease, some patients at the other end of the Crohn’s continuum have few and relatively insignificant “flare-ups,” if any. This makes Crohn’s a very difficult disease to initially diagnose and treat since doctors must rely upon the degree and frequency of patient symptoms to fine-tune the most effective treatment. Trial by error has never been more frustrating and painful. Moreover, different Crohn’s patients react differently to the different treatments just as one patient can eat lettuce or popcorn, without incident, while another could wind up hospitalized as a result of eating the same foods. I know, Crohn’s Disease sounds more like a “Soap Opera” than a serious, chronic illness.

Crohn’s is also incurable and an autoimmune disease. Its effects on the immune system make it analogous to that “gateway drug” all parents fear and the many available “effective” Crohn’s treatments aren’t always scientifically-proven. Huh? I don’t mean to criticize the hardworking researchers, volunteers and doctors who THANKFULLY dedicate their careers to finding a cure for Crohn’s Disease, but I have the disease for 30 years and have yet to receive a logical answer as to the reasoning behind the efficacy of drugs like “6MP,” “Imuran” or the various Biological Agents drugs such as “Remicade,” “Humira” or “Cimzia.” Yet, despite the short- and long- run significant medical risks associated with each of the aforementioned, these drugs are routinely prescribed for patients with Severe Crohn’s Disease. They work very well for many patients, not at all for others and still, for other patients, they cause extremely serious medical problems (that’d be me). The term “effective” is also relative in Crohn’s Disease since each treatment or drug therapy seems like a swap of digestive pain and discomfort for some other kind of a more manageable medical problem. In that regard, this sometimes feels like my doctors are “robbing from Peter to pay Paul” except I have to pay to see another medical specialist. But if it is a short term treatment, the price to pay is at least transparent. It is when the treatment works for a longer period of time that there is usually a medical price to pay which could be far worse than having Crohn’s Disease in the first place.

Crohn’s Disease & Nuances of the Snake Venom

Trying to understand Crohn’s Disease and then explaining it to friends and loved ones is like deciphering the rabid appeal of Reality Television or the world’s fascination with Donald Trump. From a medical perspective, however, I think the acceptance of certain contradictions and unknowns of Crohn’s Disease are similar to how snake venom is understood. Most people simply fear getting bit by a venomous snake, as well they should, but as with Crohn’s Disease, the devil’s in the details, as demonstrated by the following explanation written by wiseGeek “clear answers for common questions”:

Snake venom affects the human body in a number of ways, depending on the snake, the type of venom, and how much venom is released. Different snakes produce different types of venom, and even within a snake species, the components of venom appear to vary, depending on geographic location. This is why it is important to be able to identify the snake species involved when one is bitten, so that the appropriate anti-venom can be administered.

There are basically three different kinds of snake venom. Hemotoxic venom is designed to assault the cardiovascular system. Cytotoxic venom targets specific sites or muscle groups, while neurotoxic venom goes after the brain and nervous system. Some snakes combine venom types for a more effective bite, while others only carry one specific form of venom. All venoms contain a complex cocktail of proteins and enzymes.

When someone is bitten by a snake with hemotoxic venom, the venom typically acts to lower blood pressure and encourage blood clotting. The venom may also attack the heart muscle with the goal of causing death. Cytotoxic venom is designed to cause tissue death, which is why some people have to receive amputations after being bitten, because the venom has eaten away the localized tissue. Many cytotoxic venoms can also spread through the body, increasing muscle permeability so that the venom can penetrate quickly.

Neurotoxic venom works to disrupt the function of the brain and nervous system. Classically, such snake venom causes paralysis or lack of muscle control, but it can also disrupt the individual signals sent between neurons and muscles. Such venoms can also attack the body’s supply of ATP, a nucleotide which is critical in energy transfer between cells.

“Confessions of a Professional Hospital Patient”

So, what could possibly be GOOD about Crohn’s Disease and then among those good “things,” what’s BEST? Prior to the invention of Health Care Social Media (“HCSM”), I wouldn’t be writing this article, at least as a serious piece. But with the advent and proliferation of HCSM, it became possible to “connect” with people all over the world who also suffered from this Soap Opera of a disease called Crohn’s. Shortly thereafter, Virtual Patient Communities or On-Line Patient Networks for specific diseases started popping up. I stuck my toe in the pool but credibility, candor and diversity, or lack thereof, were always issues for me as I’ve basically seen it all with Crohn’s Disease having endured over 200 hospitalizations and 20 surgeries. In fact, in 2001, when I published my book, Confessions of a Professional Hospital Patient, I insisted that my publisher place the URL, www.hospitalpatient.com, on the spine of the Book because I envisioned having great success with the Book and then creating a Virtual Community of Crohn’s Disease patients who would pool their experiences to help one another. Hope and dreams are important so I just figured I had a good motivational idea that one day would come to fruition but it seemed so unrealistic at the time.

However, my Crohn’s Disease communal aspirations started to come into view when my Book immediately received critical acclaim and the media came a’ callin.’ I did NBC’s “Today Show,” a variety of worldwide cable television shows and a few key radio interviews. One thing led to another and I had soon hired a top literary public relations firm. My dreams were within my grasp, so it seemed. “Larry King Live” and “Oprah” were realistic targets in the Book’s Public Relations Plan so long as I learned how to “sell” during each interview and also kept my Brooklyn candor to a minimum. On Monday, September 10, 2001, I did our first organized national endeavor, a Satellite Radio Tour of all the key morning radio programs in the United States. It went very well, with some interviews airing live, and others taped for broadcast later that week. I was being pitched as a “Professional Patient” of sorts due to my battles with the little known, and less understood, chronic illness, Crohn’s Disease. On Tuesday, the next day, September 11, 2001, the horrific tragedy of 9-11 took place and marketing my Book was no longer of interest to me.

The Birth of Virtual Patient Communities

A few years after 9-11, things on-line got back to normal and then the Hillary Clinton-Barack Obama Presidential Campaign put “Healthcare Reform” back in the national dialogue. My Book took on a second life and I started getting emails from Crohn’s Disease patients all over the world, either thanking me for helping them via my Book, or posing questions to me given my apparent knowledge and experience. The viability of a Crohn’s Disease Virtual Patient Community again seemed reasonable but, in all honesty, it didn’t seem realistic to happen on the URL, www.HospitalPatient.com. But I knew the necessary ingredients and a few years later, after I had started a few YouTube channels like The Medical Minute, I read an article on-line about some college or graduate school kid named Sean Ahrens who was starting “Crohnology.com” as a way to “connect” Crohn’s Disease” patients. I emailed Sean immediately and summarized the story above and suggested that we Skype ASAP. He agreed and after a fun Skype session, I just smiled because I knew I had met “the guy” who had accomplished what I wanted to do all along. Now, I wanted to help him make it succeed.

Crohnology.com – Credibility, Candor & Diversity

I got involved with Crohnology.com a few days after Sean Ahrens and I spoke with one another. Even at that early stage, I was able to envision what Crohnology.com was soon to become. Word quickly spread and within a few months, Crohnology.com became THE trusted global place for Crohn’s Disease patients to share knowledge, experiences and insights, all for the purpose of helping each other manage such a multi-level challenging disease. It was also a wonderful and validating feeling to converse with such diverse people who had the same health experiences as I did. After a while of posing questions and answering questions, Crohnology.com featured my Blog. I was honored to have my personal insights published within such a Crohn’s Disease “sanctum.” Clearly, credibility, candor and diversity are all present at Crohnology.com. This makes it a most useful “tool” for a Crohn’s Disease patient. I believe I have even been quoted as saying that every Crohn’s Disease “Medical Treatment Plan” should include regularly participating in Crohnology.com.

What’s the best thing about Crohn’s Disease? www.Crohnology.com.

→ 1 Comment

Posted in "Confessions of a Professional Hospital Patient", Auto-Immune Disease, chrones, chrones disease, Chronic Illness, Coping with Crohns, Crohn's, Crohn's Disease, Crohn's Disease Mainstream Awareness, Crohnie, Crohnies, Crohnology

Tagged "Confessions of a Professional Hospital Patient", "Health Care Social Media", 6MP, Auto-Immune Disease, biologics, Chronic Illness, Cimzia, Colitis, Crohn's, Crohn's Disease, Crohnie, Crohnies, Crohnology, HCSM, Humira, IBD, Imuran, Inflammatory Bowel Disease, Michael A. Weiss, Patients, Remicade

What to ask before your 1st Crohn’s Disease Surgery

Posted on May 3, 2012 | 6 Comments

The Power of Crohn’s Disease

As a 49 year-old battling Crohn’s Disease for almost 30 years, people always ask me two (2) things: 1. What is so unique about Crohn’s Disease which makes surgery such a last resort? 2. Why has it been necessary for you to be hospitalized over 200 times for treatment of Crohn’s Disease? The answers to these two (2) questions set up a foundation of knowledge that every Crohn’s patient should acquire so they are properly equipped to most effectively interact with their surgeon during that 1^st surgical consultation. But before I share advice about what to ask your surgeon before your 1^st Crohn’s Disease surgery, I think it is also important to understand the disease, its possible progression, its medications and its potential effects on your life. That’s why I’ve chosen to write this “advice article” from a story-teller perspective. After all, surgery is surgery but there’s nothing quite like Crohn’s Disease.

Experienced Crohn’s patients are not Doctors but for what we must go through with the disease, we might as well at least have some type of Honorary Medical Degree! To that end, Crohn’s Disease forces each of its patients to learn a great deal about his or her respective “type” and intensity of disease since Crohn’s can affect one person mildly yet another so severely that he or she can be disabled. There is no medical explanation for this wide and diverse range of brutality. Moreover, these mild vs. severe flare-ups and overall Crohn’s classifications can inexplicably go away over time or they can exacerbate. The auto-immune element of Crohn’s can also introduce other chronic diseases and conditions into the patient’s situation and these Crohn’s “related” medical problems can be more debilitating than the vice-like grip Crohn’s itself often has on the life of its patients.

When you also consider the life-threatening and life-style altering side effects of some Crohn’s Disease medications, the potential severity of the disease really comes into focus. Like many other Crohn’s patients, I have come to experience it as a disease which has a mind of its own whose main attributes are unpredictability and in-curability. How can a person plan a life around such an often pervasive disease which causes debilitating and painful flare-ups the timing of which are unpredictable? Oh, and the underlying disease is incurable? There are many more dangerous and debilitating diseases than Crohn’s Disease but few feast on a patient’s physical, mental, psychological, emotional, financial, professional, social and familial well-being as much as Crohn’s Disease.

A Correct Diagnosis of Crohn’s Disease

Assuming you are accurately diagnosed and manage to dodge the months or years of being misdiagnosed with people close to you thinking you are crazy for trying to associate together seemingly unrelated symptoms as if they are all a part of one horrific and existing disease (which they are, and the disease is called Crohn’s Disease), you’ve ultimately found “the” gastroenterologist who fits your needs, personality and lifestyle. During the first few years, under normal circumstances you would have likely been under medical treatment for a variety of Crohn’s symptoms that occur when your body’s immune system is ill-equipped to fight off inflammation. In fact, when posed with the task of fighting inflammation, your Crohn’s Disease somehow confuses your immune system and causes it to attack itself instead of the inflammatory intruder. This sounds like fodder for an old Jerry Lewis Comedy but the practical medical effects of this bizarre immune system malfunction make Crohn’s Disease potent and pervasive.

Despite the possible serious manifestations of Crohn’s, your gastroenterologist will start you off with the most conservative medical treatment and then gradually move you up that scale as your condition warrants. But as you know, your condition may forever stay at that very treatable level or it can get rather aggressive like mine and that’s when your doctor has to move to more “systemic” medications or eventually have you consult with a surgeon about surgical intervention.

Crohn’s Disease Recurs which tends to negate Surgery

In answering Question 1 above, it’s important to understand that Crohn’s Disease tends to “recur” in that, by way of example, having surgery to remove 4 inches of diseased small bowl intestine might solve your pressing medical problem but the mere act of surgical intervention could start the need for continued removals or surgical repair of additional small parts of small bowel intestine. The problem with that is there is only approximately 23 feet of small bowel in the human body and your small bowel is a very important piece of human equipment. Personally, I had a small bowel resection surgery which fixed an extremely painful then-pressing Crohn’s flare-up only to have Crohn’s come back or “recur” and affect the same area of my bowel a mere two (2) months later. After almost another two (2) months of aggressive medical treatment to try and avoid another bowel surgery, this Recurrence of Crohn’s Disease in my small intestine required another surgery to remove more of my small bowel only one hundred twenty (120) days from the date of the prior small bowel surgery. Additionally, and as referred to above, the 23 feet of small bowel serves several different important bodily functions such as digestion and absorption of nutrients so each time a portion of the small bowel is surgically removed or altered, the patient will have to make significant lifestyle adjustments to remain healthy and appear normal. There is also the reality that every surgery creates scar tissue or adhesions and these natural byproducts of surgery can, by themselves, cause Full or Partial Bowel Obstructions necessitating even more surgery. This additional surgery creates more scar tissue to the point where a viscous cycle forms such that the following credo was created: “more surgery begets more surgery.” In summary, these recurrence issues are the reasons surgeons don’t like to perform surgery to fix or repair Crohn’s Disease damaged intestine.

Crohn’s Disease Medications

Prior to having to consult with a surgeon, the traditional Crohn’s Disease treatments and medications with which you might be familiar generally fall within the different levels or degrees of the disease and are as follows:

Anti-inflammation medications: (Asacol, Dipentum, and Pentasa);

Cortisone or Steroids: (Prednisone, Budesonide);

Immune system suppressors: (6-mercaptopurine [“6MP”], azathioprine, Methotrexate, and Imuran);

Biologics: (These are injectable “Anti-TNF” Agent medications such as Remicade, Humira and Cimzia which have been proven to be very effective pursuant to current Crohn’s research. More specifically, the most current research indicates that the injection of these drugs binds them to “TNF” substances and that will block the body’s abnormal inflammation response. Some studies also suggest that the usage of biologics may enhance the effectiveness of immuno-suppressive medications. While I can attest to the almost dramatic positive effects of some biologics, I can also attest to the fact that the use of biologics in Crohn’s Disease can have VERY serious long term side effects many of which are only now first coming to the attention of medical practitioners. It’s one thing to be aware of these terrible consequences due to the small print [or fast spoken] legal disclaimers on the packaging inserts [or in TV/Radio commercials] of the biologics but it’s an entirely different reality when these patients taking biologics start showing up in emergency rooms around the world with life-threatening Lung Disorders and Fungal Infections. Almost forget, these biologic drugs tend to also be very expensive.)

Antibiotics: Antibiotics are used for a variety of purposes in Crohn’s Disease because in some patients doctors believe there is a bacterial component somehow involved. They are also used to treat bacterial overgrowth in the small intestine caused by stricture, fistulas, or surgery. Accordingly, your doctor may prescribe one or more of the following antibiotics: ampicillin, sulfonamide, cephalosporin, tetracycline, metronidazole [i.e., Flagyl]. (Personal Note: For whatever reason, Flagyl has proven to be VERY effective for me during certain types of Crohn’s flare-ups. In such instances, I typically take the antibiotic for 5-10 days and then get off of it. I mention this because even the use of antibiotics in Crohn’s patients can have serious complications such as the prolonged use of Flagyl causing Pancreatitis. Again, I am NOT a Doctor but I have been in contact with many Crohn’s patients who have contracted Pancreatitis after significant use of Flagyl. Amazingly, I have thus far avoided that nightmare.)

Anti-Diarrheal Medications & Pain Medications: These are drugs used routinely by Crohn’s patients for lifestyle purposes because no one wants to spend their days in pain or stuck in a bathroom. Some patients even see specialty “Pain Management Physicians” to specifically treat their Crohn’s pain. Whatever the reason, you should always tell your gastroenterologist what medications you are taking because this information will help him or her in devising your overall medical treatment and it will also be an important piece of information your surgeon will want to know about.

Why so many Crohn’s Hospitalizations?

In answering Question 2 above, I tell people my doctors are always doing whatever is necessary to keep me off the operating table for the “disease recurrence” reasons described above. The practical result in the 1980s and 1990s were increased hospitalizations although due to subsequent changes in healthcare and in the health insurance industry, I’m not so sure I would have been hospitalized as often or for as many days each time I was hospitalized if I got as many of the same type of Crohn’s flare-ups now in 2012. In any event, since there are a variety of effective Crohn’s Disease medications, many of which I outlined above, I was thus often hospitalized to take these medications intravenously or in combinations/strengths which are not available outside the hospital. In that regard, my gastroenterologist preferred seeing me in the hospital, sometimes for 20 days, if necessary, in an attempt to get me through a flare-up with the administration of medications rather than through surgical intervention and the likelihood of losing more of my intestines. I’m not so sure health insurance companies would now agree with this safe and conservative approach since they like to “turn over” hospital beds like waiters turning over tables in a trendy restaurant to maximize their tip income. In any event, doctors still follow the same conservative medication principles but more of the patient “response time” is done at the patient’s home due to the increased cost of being hospitalized. This harsh reality of a Crohn’s Disease flare-up adds to the feelings of loneliness and isolation which many Crohn’s patients unfortunately experience.

Finding the RIGHT Crohn’s Surgeon FOR YOU

I have gone through this short summary of Crohn’s Disease treatments and medications because I think a 1^st time surgical Crohn’s patient should be familiar with the possible roads not taken and with all that is involved in leading up to Crohn’s surgery. The 1^st time surgical patient should also know that when they consult with a surgeon and their gastroenterologist thinks they need surgery, they are likely going to receive a recommendation of surgery since that is what surgeons do! Of course, there are numerous exceptions to this but my point is that you want to make sure you’ve exhausted all possible medical treatments such that the only appropriate answer to your Crohn’s problem IS surgery. If you’ve arrived at that point, then your only responsibility is to pick the surgeon who is right FOR YOU. This means consideration of skill level, personality, understanding of your lifestyle and of the quality of life you are seeking by having the surgery. You also need to go through a battery of diagnostic tests prior to the surgical consultation and your gastroenterologist will naturally order these tests in trying to help diagnose you. It has been my experience that surgeons like to look at the actual Films from a CT Enterography and a GI Series. Depending upon your medical/financial and health insurance situations, you may have to undergo additional testing. Regardless, try to always obtain the original Films from each test so that the surgeon you ultimately choose can use them to successfully operate on you.

The Crohn’s Disease Surgeon – What to Expect

It’s difficult to recommend questions to ask a surgeon in a Crohn’s Disease case because with few exceptions every surgeon I’ve ever encountered has been SO confident and thorough that they leave little room for elaboration. Sometimes, however, this “confidence” can be construed as arrogance but I’ve also come to learn that with supreme surgical skills in Crohn’s cases comes a certain “self-assuredness” which can be off-putting if not expected. For example, these surgeons bring up money and the cost of the surgery earlier in the doctor-patient consultation than in any other medical situation I’ve ever encountered. Again, there’s nothing wrong with making sure you will be paid promptly for providing your services but such “directness” during a medical consultation may be a turnoff to you. If that is the case, please at least take away from the encounter that Crohn’s surgery is SERIOUS BUSINESS. The surgeon is being asked to basically take apart your insides and then put them back together sans the Crohn’s problems. If, even with that understanding, you don’t feel comfortable with that particular surgeon, look elsewhere but don’t forget you will encounter some aspect of this self-assuredness in almost every surgical consultation.

The Crohn’s Disease Surgeon – What to Ask

Prior to actually meeting the surgeon for the 1^st time, you should write out your questions so that you are organized and respectful of his or her time. You should also have a written list of all the medications you are taking. Every surgeon will appreciate you doing this. However, LISTEN to them first and even take notes before you ask your pointed questions as they are accustomed to the nervousness and anxiety of 1^st time patients and thus they are usually overly comprehensive in their initial explanation of the surgery. Besides the obvious questions related to the surgery such as the possibility of doing your procedure via laparoscopic surgery (i.e., instead of cutting your entire torso open), the estimated recovery time and the amount of pain involved, you should inquire about post-operative care and about the subsequent limitations in your work and physical activities and when you can start instituting your dietary preferences. Ask about the most likely problems which will be encountered with your particular surgery and what the ramifications would be to you if such problems occurred. Getting back to the pain issue, I would ask about the availability of a Pain Management Team at the Hospital if you are overly sensitive to post-operative pain because Crohn’s surgery can be among the most painful surgeries performed. (For example, a day or two after my 1st Crohn’s surgery, a kind nurse gave me a pillow on which she had written what I thought were “girly” drawings and she told me it was my “Cough Pillow.” I thanked her for her thoughtfulness but put the Cough Pillow as far away from me as possible in case one of my macho buddies stopped by to see me and found me cuddled up asleep with this girly pillow. Well, after the first inclination to cough hit me and I tried to cough but nearly passed out from the pain, that Cough Pillow and its girly drawings NEVER left my side and I didn’t care who saw me use it!)

Always keep in mind that this very confident surgeon may have to attend to you when you’ve had an unsuccessful surgery and he or she will need to “problem-solve” to get you better. Confidence is great but empathy and adaptability are also important. Be realistic with what you expect from the surgery and make sure you are both “on the same page” with your expectations and the surgeon’s capabilities/intentions. Understand the various costs involved with the surgery such as the Surgeon, Anesthesia, Hospital, Laboratory, etc. The Surgeon will not be able to break down the other costs but the office staff will probably know from whom you will be receiving medical bills. Lastly, if this is the surgeon you choose but the price is too high, ask if there is a payment plan available. It may feel strange negotiating over life or life-style saving surgery but you must and that’s why I think it is also always best to bring along someone (e.g., your mother, brother, sister, best friend, etc.,) who will respectfully act as your Patient Advocate of sorts because you will certainly need one when you are incapacitated from the surgery. More to the point, it is always easier having a “buffer” to ask about or respectfully demand those difficult items or issues which you don’t want to get into a heated conversation about with the surgeon who will be presiding over you at your most vulnerable condition. Besides offering you moral support, that Patient Advocate can more easily objectify the “transaction” just as the “self-assured” surgeon can since he or she has presumably done this hundreds or thousands of times before.

Now, you are ready for surgery. Good luck.

→ 6 Comments

Posted in 1st Crohn's Disease Surgery, Anti-TNF Agents, Assertive Patient, Auto-Immune Disease, Crohn's, Crohn's Disease, Doctor Patient Relationship, The Empowered Patient

Tagged biologics, Cimzia, Cough Pillow, Crohn's, Crohn's Disease, Crohn's Disease Medications, Crohnie, Crohnies, CT Enterography, Doctors, Flagyl, Fungal Infections, GI Series, Hospitalizations, Humira, IBD, immune system, Inflammatory Bowel Disease, Michael A. Weiss, Pain, Patient Advocate, Patients, Physicians, Prednisone, Recurrence, Recurs, Remicade, Resection Surgery, Small Bowel, Small Bowel Resection, Surgeon, Surgeries, surgical consultation

Impersonalized Medicine for Chronic Illness Patients

Posted on April 14, 2012 | 3 Comments

(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 1^st 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 12^th 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.

→ 3 Comments

Posted in Auto-Immune Disease, Chronic Illness, Chronic Pain, Crohn's, Crohn's Disease, Crohnie, Crohnies, Health Insurance, Health Insurers, Living w/ Chronic Illness day-to-day, Managing Chronic Illness, Narcotic Pain Medications, Pain Management Doctors, Personalized Medicine

Tagged "B.O.O.P.", Allergies, Auto-Immune Disease, autoimmune, bowel obstruction, Chemo, Chemotherapy, Chronic Illness, Crohn's Disease, Crohn's Disease Pain, Crohnie, Crohnies, Endocrinologist, Gas pain, gastroenterologist, Health Insurance, Health Insurance Companies, Health Insurers, Healthcare, In-Network Physicians, Inflammatory Bowel Disease, narcotic Pain Medications, Pain, Pain Management, pain management doctors, Prednisone, Severe Pain, testosterone

Category Archives: Auto-Immune Disease

Chronic Diseases are expensive medical conditions even with Health Insurance

Crohn’s Disease, Humira, FDA, Respiratory Problems & “BOOP”

Partnership with Patients Summit & “Humira” position

What to ask before your 1st Crohn’s Disease Surgery

Impersonalized Medicine for Chronic Illness Patients

“Confessions of A Professional Hospital Patient”

Recent Comments

Archives

Connect with Professional Patient Perspective:

MedStartr