The “Individualization” of seemingly similar
Crohn’s Disease and Ulcerative Colitis cases
The statement above was excerpted from a rather lengthy response attributed to a frustrated essentially life-long Crohn’s Disease patient in a recent Crohn’s Disease and Ulcerative Colitis Facebook “Group” when the virtual discussion focused on the tragic death of a young Crohn’s Disease patient soon after her obituary was posted on social media and Crohn’s Disease was listed as the cause of death. While it appears to be scientifically debatable whether the traditional chronic, autoimmune systemic effects of Crohn’s Disease can literally cause death, the writer of this generalized statement took issue with the inaccurate mainstream seemingly “bothersome” portrayal of Crohn’s Disease because “bothersome” does not reflect what is a chronic, incurable, Inflammatory Bowel Disease (IBD) which often causes severe, pervasive and disabling physical and emotional manifestations and can have a variety of lifestyle-altering effects due to it being an “Invisible Disease” and it is also a very expensive disease to manage.
While the above generalized statement does not apply to most gastroenterologists who treat Crohn’s and Ulcerative Colitis patients, it does represent an accurate window into the harsh reality faced by many IBD patients because every case seems to be individualized yet, too often, IBD or emergency room doctors fail to distinguish a severe, complex IBD case, which might require immediate medical or surgical intervention, from one that is also severe and complex but nevertheless holds steady at the “status quo.” Moreover, even the most experienced, dedicated and compassionate of healthcare professionals often disagree on the methods they use, and in what order they use them, in treating acute flareups of IBD and/or in managing IBD and/or doing both when the patient is an adult or a child who’s still growing. These “presenting” patient situations, and thus physician decision-making responsibilities, become even more difficult and when the patient has undergone numerous abdominal surgeries, suffers from chronic pain or doesn’t respond favorably to the most effective drug therapies.
UNACCEPTABLE “Homogenized” treatment of different IBD cases
The potentially dangerous homogenized treatment of IBD patients occurs for a variety of reasons, not the least of which is the lack of an agreed upon scientific pathogenesis which explains Crohn’s Disease, Ulcerative Colitis or Indeterminate Colitis [i.e., when symptoms of both Crohn’s and Ulcerative Colitis are present]. There are also disagreements amongst the smartest and most experienced of gastroenterologists and colorectal surgeons regarding the manner in which to generally treat these diseases and best utilize the most efficacious drug treatments [i.e., utilizing a “Top-Down” or “Bottom-Up” strategy]. In my humble opinion and based on thirty (30) years of experience with Severe Crohn’s Disease, the foregoing challenges in treating IBD, at least from a patient’s perspective, then become just additional symptoms which must be confronted like all the other ones.
But it is patently UNACCEPTABLE when physician complacency is to blame for depriving IBD patients of the “personalized” care their unique case of Crohn’s Disease or Ulcerative Colitis requires due to their scientifically proven genetic predisposition for contracting an IBD. More specifically, there still exists a rather large group of IBD-treating physicians who rely solely upon the current, apparently technologically sound and precise diagnostic tests to the DETRIMENT of the input of living, breathing IBD patients who simply want to help these doctors by contributing HOW THEY FEEL to the accrual of numerous factors which must be considered before an IBD physician devises a diagnosis and then the most efficacious treatment plan.
If a broken-down Car could TALK to the auto mechanic
explaining the symptoms associated with the car not starting,
don’t you think the mechanic would listen?
Just imagine, for a few seconds, if a car with a perplexing transmission problem could actually SPEAK TO THE AUTO MECHANIC further elaborating on the challenging conditions which prevent the car from starting. Wouldn’t the auto mechanic welcome such input? Wouldn’t such input from the car likely provide invaluable information for the auto mechanic such that he or she would have a HUGE advantage over the auto repair shops whose cars were not able to explain their problems?
It is at the intersection of physician complacency and IBD patient crises when not listening to, or trying to appreciate, the pleas of an IBD patient, when catastrophic results are most likely to occur.
The indignities of having to “prove” to a gastroenterologist
in the Emergency Room (ER) of a New Jersey hospital
that I was suffering from EIGHT (8) Intestinal obstructions
Several years ago, in approximately 1994, this happened to me when my known case of Severe Crohn’s Disease kept causing incredibly painful small bowel obstructions which prompted my parents to bring me to the ER of the nearest New Jersey hospital. Due to having apparently “bothered” the same covering gastroenterologist in that ER three (3) times in one week, with at least two (2) of these instances occurring at inopportune times such as at 4 AM, he had grown weary of my complaints because in his opinion the severity of my pain did not come close to matching the findings of the infallible diagnostic tests on file at the hospital about my case. His routine physical examination of my abdomen also yielded little scientific evidence for him to take seriously my proclamations of escalating pain and associated pleas for help. As a result, his increasing annoyance with me provided the fuel he needed to publicly question my integrity and manhood. Then, in the presence of several kind and compassionate healthcare workers in that ER, each of whom was familiar with me and my Crohn’s case due to my then-frequent appearances in their ER, this heartless doctor accused me of manipulating the vagueness and “incurability” of my Crohn’s Disease to legitimately frequent the ER for the illegitimate purpose of enjoying the attention and the narcotic pain-reducing drugs.
A chronic patient without credibility will never be taken seriously
Given my noticeable compromised physical and mental states, I was powerless to defend myself from these contemptuous, slanderous remarks made by my own physician. I felt like a wrongly accused criminal in a John Grisham novel but just like in the movies made of these literary legal thrillers, I knew I had done nothing wrong and somehow would be vindicated in the end. Without respect for my credibility as a patient with a disease often misunderstood, misdiagnosed or just “missed” by the smartest and most experienced of healthcare professionals, I knew I would never be treated fairly by this doctor despite a well-respected emergency room compromised of a tight group of dedicated, talented and hard-working healthcare professionals, of which my “Gucci”-loafer-wearing doctor was not a member. [The “Gucci” comment was a running joke in my family at the time once my Mom or Dad had pointed out chronic patients like me helped pay for many of this egomanical doctor’s Gucci loafers.]
A chronic patient should take into consideration
the needs of those who care about him
While heading into New York City on an emergency basis and unexpectedly disrupting the lives of the many people who helped care for me was the exact situation I was trying to avoid when I engaged a highly-recommended New Jersey gastroenterologist whose gastroenterology practice was located close t0 both my New Jersey home and law office, it was obvious to everyone who cared for me, and even to a few of the ER staff members who were kind enough to whisper their moral support into my ear, I knew I had to continue seeking an answer to my painful intestinal problem before I lost control over my situation and wound up in an operating room in a strange New Jersey or New York hospital. To that end and knowing I would likely suffer another small bowel obstruction shortly after being discharged from the ER, I asked my arrogant Gucci doctor to help me put off the pain for just a few hours so I could travel into New York City and see my regular gastroenterologist, Dr. Mark L. Chapman.
Why I took a “vacation” from mt New York City gastroenterologist?
I had never stopped technically consulting with my NYC gastroenterologist, Dr. Mark L. Chapman, but at the time I was practicing law in New Jersey and it became impracticable for me to see him for routine or even acute Crohn’s Disease matters because the mere travel time involved with going back and forth from New Jersey to NYC would have cut into my billable hours at the law firm. Dr. Chapman understood my ambition to succeed despite my aggressive form of Severe Crohn’s Disease so he referred me to a local New Jersey gastroenterologist who he had helped train and thus was able to vouch for his capabilities to properly handle my complex case. My problems was never with that doctor but the inconvenient flare-ups of my disease seemed to always occur when the same condescending Gucci-wearing gastroenterologist was the “covering” doctor on nights, weekends and holidays.
No matter what, ALWAYS be respectful when
addressing a healthcare professional
Probably feeling as if my polite request for pain medication validated his unethical and wholly inappropriate personal swipes at me, my pompous ER gastroenterologist was quick to comply with my respectful request because that meant he could go home sooner. My parents were active participants in the entire situation but they were unable to remain objective at that relatively early stage of my life with Crohn’s Disease. They couldn’t tolerate seeing me in such recurring severe pain which had necessitated three (3) trips to the local ER in just that past week and countless ER trips in the weeks and months preceding that week. But they were beginning to understand my unwavering belief in my body such that they knew “something” had to be terribly wrong for me to be this persistent and almost combative with this New Jersey doctor once it was clear he refused to take me seriously.
LISTENING is still a Doctors’ most effective tool
Within a few hours I had been seen by Dr. Chapman and he listened intently to the medical aspects of my past week and month and then sent me directly for an antiquated, but extremely reliable and somewhat invasive, diagnostic test called an “Enteroclysis.” The concerned manner in which Dr. Chapman listened to me and then followed-up with probing questions, each with a specific purpose toward determining the most appropriate diagnostic test, was comforting in a way which made me feel like I was exactly where I should be, given my recurring Crohn’s Disease problem. While Dr. Chapman’s office had MY same diagnostic tests and extensive medical history on file as Dr. Gucci in New Jersey, my answers to Dr. Chapman’s questions apparently revealed a significant change in my situation. I was that talking “car transmission” and Dr. Chapman was an auto mechanic taking advantage of every piece of useful information I was able to contribute.
What is an “Enteroclysis” test?
At the time, it as my understanding Enteroclysis tests were being supplanted by less “labor-intensive” diagnostic tests because these newer tests were more dependent on technology and they delivered similarly accurate results but in a much more cost-effective fashion. However, my repeated and distinct complaints of pain in different areas of my small bowel sounded to Dr. Chapman as obstructional pain in different “skip areas” (i.e., segments of diseased small bowel sharply set apart from adjacent segments of normal bowel) of my small bowel thus enhancing the unique value of the Enteroclysis test because it was capable of being precise no matter where in the small bowel “loops” the pain originated or in how many different small bowel loops such precision was required.
This was made possible because the test involved the radiologist infusing drops of radiographic contrast through a thin, clear tube which I had slowly “swallowed” [with the help of minimal intravenous “sedation” because I had to be alert to change positions whenever requested by the radiologist so he or she could advance the tube through all loops of my small bowel] which was then carefully passed through my entire small bowel. Whenever I complained of “blockage-type” pain, the tube “swallowing” part was temporarily stopped so the radiologist could infuse the aforementioned contrast to that exact spot so that it could be “photographed” using fluoroscopy. It was extremely uncomfortable for a few HOURS but the odd thing about Crohn’s Disease is that you will do that which you never thought you could do just to find answers to the current cause of your pain so that it could be treated and abated or extinguished.
Chronic Patients with incurable diseases like Crohn’s
Disease and Ulcerative Colitis must develop, and work at
establishing, mutually respectful relationships with their doctors
Having known me for several years and successfully guiding me through numerous potential catastrophic hospitalizations and surgeries primarily in New York, but also on business trips or vacations to Alabama, California, Massachusetts, Nevada, etc., Dr. Chapman never doubted me when I complained of such extreme symptoms of my Crohn’s Disease. In fact, Dr. Chapman and his staff had taught me as a young Crohn’s Disease patient to be vigilant in respectfully communicating my symptoms. But, they also taught me to “choose my battles” because not every pain or symptom associated with Crohn’s Disease is treatable and to harbor such expectations is unrealistic and unhealthy. More importantly, persisting to fight such a battle which could not be won would only negatively affect my credibility with other doctors. Therefore, I suspected this Enteroclysis test would reveal not so much that I had a gastrointestinal problem which required surgery but that Dr. Chapman was trying to ascertain the urgency of such surgery. As I would come to learn many years later, trying to understand Dr. Chapman’s anticipatory thought process was like trying to fathom how baseball great Willie Mays would purposely swing and miss at pitches he loved to hit in the early innings of games so that pitchers would confidently throw these same “out” pitches in crucial game situations in the latter innings when Mr. Mays would welcome them and NEVER MISS HITTING THEM for typically game-winning hits.
My New York City gastroenterologist
LISTENED and took me seriously; my
New Jersey “Gucci” gastroenterologist DID NOT
Sure enough, when the radiologist who administered the Enteroclysis test was finished, he politely told me not to go anywhere until after he, and then I, had spoken to Dr. Chapman. I couldn’t hear their phone conversation but judging by the quiet, confident stride of the radiologist while he shared the test results with Dr. Chapman, I sensed their conversation was revealing and definitely “conclusive.” I wasn’t sure how to interpret these observations but when the radiologist handed me the phone he looked like an expert car mechanic who had just completed putting together that one car in the shop with the insurmountable mechanical issues which no one in the joint thought could ever be repaired to run as it was designed. The rest I remember like it happened yesterday.
Dr. Chapman asked me what I was doing over the next few days as if he was planning something and before I could answer he said the following, which I am paraphrasing to the best of my recollection: “Eight (8) Small Bowel Obstructions. You have 8 of them and they must be fixed immediately. Cancel all your plans and get your affairs in order so you can be operated on within two (2) days. I will answer all of your questions when I see you in the hospital but I am very busy with other patients at the moment but suffice to say it, I’m astonished at what you’ve had to put up with during each Emergency Room visit. Hang in there, my staff will set everything up and we will get you better. Okay?”
I was speechless. Dr. Chapman seemed to be sharing his shock at how my pleas for help were IGNORED while also trying to both act professionally and comfort me. I trusted him emphatically so there was no need for additional discourse but I so badly wanted to ask him how this New Jersey gastroenterologist had REPEATEDLY missed such an obvious and dangerous diagnosis but I got the feeling there were no acceptable answers and this bothered Dr. Chapman terribly. I didn’t even have time to be angry at the Gucci gastroenterologist who literally made fun of me for needing to run to the ER for every little pain I experienced. However, I never forgot how his complacency, incompetence and/or indifference caused me and my parents so many sleepless nights worrying about me possibly perforating my bowel and waking up in an operating room, or worse. HE did not take me seriously. Instead, I did exactly what Dr. Chapman told me to do and by the next day or so, I was a patient at Mt. Sinai Hospital in New York City being prepped for major (successful) surgery later that day.
I can totally relate to the quote above and it’s astonishing to me that Crohn’s Disease & Ulcerative Colitis patients must still worry about the barbaric treatment they may encounter in an emergency room of a hospital during a time of both great technological advancements in healthcare and an appreciation of patients as being one of the most under-utilized resources in healthcare.
The latest and greatest diagnostic tests certainly serve an important purpose in diagnosing and treating Inflammatory Bowel Disease But there is no substitute for a Crohn’s or Ulcerative Colitis patient who takes the time to clearly and accurately articulate what they are feeling for the benefit of a caring physician who understands that LISTENING is still the benchmark for the best patient care.