Due to various painful ramifications of my recent successful Hip Replacement Surgery, “I didn’t have time to write a short letter, so I wrote a long one instead.” Mark Twain
Mind, Body & Spirit vs. Damn the Torpedoes
In my most recent Blog Entry I described the “Diagnostic Journey” as the necessary undertaking patients must initiate to make sense of their serious, abnormal, debilitating and unrelenting medical symptoms and doggedly pursue the proper diagnosis and successfully treatment pursuant to some CPT or HCPCS insurance code while the world of traditional medicine doesn’t recognize their symptoms as reflective of ANY such insurance codes and health care professionals characterize their palpable complaints as stemming more from their mind than from their body. Accordingly, powerful and pervasive psychological doubts can creep in from patient exposure to repeated conclusions by the most respected and erudite of medical professionals that what appears as real to these patients as the need to breathe is invisible and thus of no physical consequence. Due to the societal pedestal upon which most doctors are placed by the patients’ friends, colleagues and loved ones, these doubts logically can spread to the counsel of these patient confidantes and then the Diagnosis Journey itself could be compromised. It is at this point when lonely, counterintuitive self-assuredness intersects with seemingly proven scientific hopelessness and the patient’s mind, body and spirit must agree to move forward, damn the torpedoes and commence the “Patient Diagnosis Journey.”
The Support of my Parents & “Available Time” fueled my Cause
In 1984 when I faced such painful, unpredictable, systemic and often bizarre symptoms, I was just a naïve 21-year-old and it didn’t make sense to me that a person could suffer as much as I was with palpable and obvious medical symptoms yet doctors couldn’t help me. Moreover, when doctors realized they couldn’t help me they openly donned my sincere, desperate and at times severe complaints as apparent “made-up” problems to seek attention. It was as if by stumping them, they resented my having challenged their medical expertise and experience. For some reason, their sheer arrogance and what I perceived to be “meanness” at the time only strengthened my resolve to figure out the cause of my dire situation.
My determination sounds cool and tough but the reality is it all would have been for naught if I did not have the unyielding support of my parents. That support came in various forms and included coming to doctor appointments with me for moral support, helping me with the health insurance paperwork, paying for much of the costs incurred on my Diagnosis Journey and literally holding my hand and telling me “everything’s going to be okay” when I was in the fetal position on the bathroom floor trying to manage the increasingly severe abdominal pains most times I felt a bowel movement coming on. Additionally, I was single and just out of college at the time so there were few obligations I couldn’t put off or postpone to pursue the correct diagnosis and treatment for my medical problem. That said, it occurred at a time in my life when I was supposed to begin some type of professional career but I hadn’t yet figured that out and my unpredictable health issues made temporary jobs the best fit for me.
What Happened to Me in 1984/1985, Shouldn’t Happen NOW
During my Diagnosis Journey, I became astonished at the narcissistic and rote manner in which most doctors performed their job. For example, the more specialized the doctor, the more they seemed interested in only validating their learned expertise by telling me with big scientific words what my symptoms did not indicate; as opposed to listening to me as a person and trying to apply their formidable medical experience and talents to assess my medical problems, no matter how atypical they appeared. In fairness, it was 1984/1985 and I think the doctor-patient dignity and respect disparities have substantially changed due to the proliferation of health care social media and the democratization of most healthcare “transactions” such as the doctor-patient diagnosis/treatment discussion in the Exam Room. Perhaps more importantly, it is the ability of patients to almost instantaneously swap stories and symptoms with other patients from all over the world which has created a technology-powered “Patient Movement” which has empowered patients with incredibly valuable information to help with all diagnosis and treatment situations.
I caution these newly “Empowered Patients” to nevertheless always be respectful of all Health Care Professionals because it is mutual respect which will create the “collaborative” relationship they seek, especially with respect to diagnosing and treating chronic, autoimmune or rare diseases, when “listening” is the most productive tool in the Exam Room. There are many other ways patients can now utilize health care social media platforms such as Facebook Groups, Google+ Hangouts, TweetChats, Podcasts and Skype sessions but I leave that discussion for another Blog Entry. However, just knowing the many ways in which patients can now be aided in being diagnosed and treated helps me sleep at night knowing that another child or young man won’t have to go through what I did in 1984/1985 to be correctly diagnosed and treated with Crohn’s Disease.
My Diagnostic Journey w/ Crohn’s Disease – A Foretelling Childhood?
It was 1984 or so and I had just made it through four (4) years of college foolishly thinking having a hangover was how everyone felt when they woke up in the morning. I always had stomach “issues” going back to my childhood but they never became “systemic” (i.e., they never affected other body parts or systems) as eventually I was always able to connect them back to either indulging too much in alcoholic beverages, eating greasy foods late at night or, eating food which, for some reason, did not “agree with me” or slowed down my digestion to the point where I would get “distended” or visibly “bloated” and have to lie face-first on my bed for a few hours to combat the pain. As I found out later in life, my parents were well aware of my stomach problems ever since I was a baby as they had great difficulty finding baby-formula which I was able to properly digest.
I also learned during a recent chat with my Mom while interviewing her about her role as a “Caretaker” for a Documentary my Nonprofit Foundation, Crohn’s Disease Warrior Patrol, is producing about the potential severity of Crohn’s Disease, that as a baby, on occasion, I would need physical “assistance” from my pediatrician with secreting bowel movements from my body. According to my Mom’s best recollection, occasionally I would scream and cry for hours with a different and more serious type of intensity and she’d take me to the pediatrician where he would examine me and notice a bowel movement “locked and loaded” but too shy to come out. His forceps then aided what should have been a natural process and I would be fine for many months. I wonder how he billed insurance companies for that!!!
Additionally, now that I think about it, my first general doctor diagnosed me in high school as having a “slow motility” problem because I was often constipated and, as explained above, became painfully distended. But there was never a reason given for the causation of the slow motility. I also remember that symptoms typical of seasonal allergies would affect me year-round and be unpredictable. The worst of these allergy symptoms was the fatigue which would overtake me to the point where I would need to suddenly sleep at fun family dinners. My Dad would yell at me to wake up because it was impolite and he figured it was the result of some shenanigans my friends and I had taken part in the previous night. But I had no control over the sudden onset of the fatigue which made me feel like I had just taken the drug “Benadryl.”
At some point my folks took me to an Allergist and I participated in several diagnostic tests but the conclusions were always vague compared to the specific results my friends received when they learned they were allergic to dogs or cats or pollen, etc. and they had to go back to the doctor every 2 weeks or so for allergy shots. I always thought that was so inconvenient until a well-respected allergist told me and my Mom after his close analysis of the allergy tests he administered that I would only be free of my symptoms if I lived in some foreign country (I think it was Brazil) because whatever he thought I was allergic to was not grown there. Unfairly, based on that lone experience, I equated allergists with voodoo doctors but as it turned out, there is some environmental component to my Crohn’s Disease.
Back to How it all Began – Four (4) Wisdom Teeth Extracted
In and around 1984, it was common to have all four (4) Wisdom Teeth extracted at the same time. I had some type of painful infection or swelling in one of the wisdom teeth so my Mom found me a top notch oral surgeon and during the consultation he convinced me to have all four (4) wisdom teeth out at the same time, especially since I “was a healthy young man.” While it was performed by an oral surgeon, it was such a common procedure amongst my peers that setting it up and then discussing it with my friends felt as innocuous as anything performed during a routine dentist appointment.
Seriously Swollen & Inflamed “Chipmunk Cheeks”
After the Wisdom Teeth surgery, I woke up the next day and looked like a chipmunk with VERY swollen cheeks. I had anticipated this “look” and even took some very funny self-deprecating pictures which today would have made their way to Facebook and ruined any chance I had at future employment. Well, not exactly, as I’m sure I had a future dressing up as a promotional Disney character waiving prominent Sales Signs in front of automobile dealerships to highlight weekend sales to the rubber-necking drivers. Anyhow, after being good-naturedly mocked by everyone within walking distance of my house, I began to experience some pain in and around the gum areas where he had operated but it was tolerable with the pain medication I was given. Again, this was consistent with every similar oral surgery I had heard about from my friends. But after the gum pain had resolved in a few days, my cheeks were still very swollen and this was an outlier which kept me in my house for much longer than I had expected.
Nurse “Captain Obvious”
Approximately a week after the wisdom teeth surgery, I remember going for the initial follow-up exam and prior to the oral surgeon entering the exam room I noticed “concern” on the faces of the nurses. Each was observing me like a laboratory rat until the one loquacious youngest nurse commented that she had never seen someone’s face still so swollen one (1) week after the surgery. The others appropriately looked at her with contempt for sharing such a potentially litigious professional observation. The oral surgeon was not as forward as Nurse “Captain Obvious” when he first saw my super-swelled cheeks as he made some funny comments about them to diffuse the strange type of tension which was discernible in the room. After examining me more closely, he told me everything looked fine but because the swelling was still on the extreme side, he was putting me on a course of antibiotics strictly as a precaution to guard against an infection. He didn’t specifically explain the inflammation and by the casual way in which he handled things I just assumed this had happened to other patients and that Captain Obvious was just inexperienced.
THROBBING Cheek Muscle “Rebound Pain”
The antibiotics seemed to be working in terms of reducing the swelling in my cheeks but they were causing me a continuous upset stomach. Since I only had a few days left of the antibiotics, I figured I would ride it out and tolerate the stomach pain for the benefit of being able to show my face in public and simultaneously conclude my interactions with the oral surgeon. However, just around the time the swelling in my cheeks had receded and returned to normal, I began experiencing a seemingly “phantom” pain as the muscles in my cheeks came alive like a developing California wildfire suddenly turned fierce by the Santa Ana winds. It literally felt as if someone had stretched my cheeks as wide as possible and kept them stressed for a significant time period such that now my cheek muscles were throbbing as a result of having been over-extended for so long. Based on my inability to sleep or do anything but hold hot compresses against my cheeks, I thought this unrelenting pain might be indicative of a more serious problem or infection so as I was initially instructed by the oral surgeon about any complications, I went back to the oral surgeon to seek treatment for this latest development.
NSAIDs not for me due to “Bad Stomach”
Ever since I was a teenager, anti-inflammatory drugs were never an option for me because I had tried some popular over-the-counter brands a few times for common sports injuries but they always caused such severe stomach pain that my general doctor who was aware of my “bad stomach” advised me to never again take “NSAIDs” [i.e., non-steroidal anti-inflammatory drugs]. His stern warning about over-the-counter drugs seemed strange at the time but I do recall it came after an emergency room visit when my abdomen had become dangerously “distended” from me taking several NSAIDs so that I could play in some basketball tournament with a severely sprained ankle. I had advised the oral surgeon of this at the get-go just as I did all new health care professionals before they began treating me since NSAIDs had become quite popular both as a pain reliever and to reduce inflammation and it was unusual that I could not take them. If any doctors questioned my sensitivity or they nevertheless tried to convince me to try a new NSAID, I invited them to contact my general doctor who had been treating me since I was a young boy.
I thought about this as the oral surgeon explained this cheek muscle pain to me as a minor consequence of him having to use a surgical device to hold open my mouth for the duration of the wisdom teeth surgery. Instinctively, he suggested that any over-the-counter Anti-Inflammatory medication (i.e., NSAIDs) would handle the pain. But then he remembered I couldn’t take NSAIDs and he assured me not to worry as the pain would go away shortly when the cheek muscles “recovered” from the trauma of having been stretched by a mechanical device for a few hours. He also again prescribed some typical post-operative antibiotic just in case an infection was developing. But this was a different anti-biotic because I had complained to him about how upset my stomach became from the last antibiotic he had given me.
Narcotic Pain Medication for Painful Inflammation
The oral surgeon had answered all of my questions but I found it strange he was offering no medical relief for my non-stop throbbing pain, which he caused and which was preventing me from going to work for a few days. I thought to myself, “Maybe he’d let me stretch his mouth open for 3 hours so he could understand the intensity of the pain I was dealing with?” In any event, I thanked him for alleviating my fears about the pain being indicative of a more serious problem and asked him for more narcotic pain medication so I could function as a productive person at my new job in New York City while my cheek muscles returned to their normal respective resting places on my face. I also commented that this cheek muscle “rebound” pain was worse than the inflammatory pain from the surgery. But before I could finish my sentence I could see the oral surgeon make a face as if he thought I was crazy or driven by some other agenda. To illustrate his point, he commented that I was the only person who had complained of this pain being so severe since anti-inflammatory drugs seemed to alleviate the pain. I then reminded him that I couldn’t take any NASIDs and I could see him slowly begin to understand my situation as he began to commiserate with me. He then even attributed my inability to take NSAIDs as the reason why my cheek muscles hurt so much. Still, he was not writing a prescription other than the one for antibiotics and I wasn’t leaving his office until he did.
It seemed as if he thought I should not require pain medication for the inflammation in my cheek muscles since no other patient had required it despite the fact that he knew they were aided by NSAIDs, and I was not. Accordingly, I just stared at him waiting for the prescription and I ignored his facial expressions conveying his obvious thoughts that I was somehow trying to string out a Percodan or Percocet high. He relented after he realized I wasn’t budging and without looking at the Percodan prescription to determine the amount of pills, I thanked him for treating me in such a personalized manner. Since I didn’t know how long this cheek muscle inflammation would last, I deferred to his professional judgment and was prepared to trust him that it would be a very short period. I then hoped this was the end of my relationship with the oral surgeon even though he was a nice man. I was just tired of the hassle of going back to him and also having to substantiate my need for different medical treatment than other patients for what was a relatively common medical procedure. (Unfortunately, I would soon have to get used to life-long complications from routine medical procedures and begging doctors for help regarding pain from inflammation because 30 years with the autoimmune and inflammatory Crohn’s disease made no medical procedure “routine” and it also left me unable to normally fight inflammation and this made virtually every similar interaction with healthcare professionals just as awkward, difficult and dignity-defying.)
Wisdom Teeth Inflammation, Take 2 – “2nd Verse, same as the 1st”
They say “you meet the same people on the way up, as you do, on the way down.” So, a few weeks later, when, without provocation, I woke up and the LEFT side of my face looked like I had just gone through another multiple wisdom teeth surgery, I was glad I had left the oral surgeon on such good and respectful terms. As I recall, my last communication with his office was over the phone when he had to switch me again to a different antibiotic as the one I was taking for the cheek muscle pain was causing intolerable stomach pain. I was not in pain this time from the swollen cheeks but I again looked like a chipmunk so it certainly fell within the “complications” department necessitating a phone call to the oral surgeon regardless of how much time had passed since the initial surgery. But when I called his office about yet another swollen cheek problem related to my surgery, I think they thought there was something wrong with me mentally because it seemed impossible for my cheeks to swell up again to chipmunk-level almost two (2) months after I fully recovered from the wisdom teeth surgery. Reluctantly, the receptionist put me on hold so she could speak to the oral surgeon to figure out when he could see me.
At first she came back with an appointment in 3-weeks’ time but then I carefully explained to her that I looked EXACTLY AS I DID THE DAY OF THE ORAL SURGERY and I wasn’t waiting 3-weeks for whatever infection brewing inside of me to cause me even more problems. I also asked her rhetorically how many of his patients had such serious inflammation in their cheeks two (2) months after the oral surgery. She politely placed me on hold again, and after another consultation with her boss, the receptionist now had an attitude and sternly said the “doctor” would squeeze me in later that day but I must be prompt otherwise he would not be able to see me for a few days. Her attitude bothered me because if this were her, she’d be crying and threatening to sue but I needed THIS particular oral surgeon to witness and exam my mouth and cheeks so I complied with her marching orders.
“The Boy in the Plastic Bubble”????
As I traveled into New York City from Queens, New York, my mind raced after the worst possible medical situations and it concluded that I might be turning into the “Boy in the Plastic Bubble.” My oral surgeon was certainly surprised by my appearance but he played it down thinking I simply had another infection. He began giving me stronger antibiotics partly to help me get better and, I suppose, also to cover his ass, in case I did not. Over the next few days, however, he again had to keep changing antibiotics because one hurt my stomach more than the other. This abdominal pain was also a new feeling as it felt like my stomach was RED-HOT and “agitated” such that anything I ate or drank triggered a “punch in the gut-like” pain. For what it’s worth, I was also beginning to experience noticeable knee pain and complete lethargy would “come over me” unpredictably and make my legs feel like they weighed 1,000 pounds, just as it had when I was a kid at some fun family dinners.
I had no idea what these other symptoms had to do with the wisdom teeth extraction but something strange was going on inside my body yet it was only visibly manifesting itself in the form of embarrassing inflammation of my cheek on the left side of my face. I had an “Invisible Illness” with a “tell” of occasionally swollen cheeks. If the Internet had existed at the time, my desperate Web MD searches might have convinced me I was really a fish or a bird only disguised as a mammal. Regardless, I again trusted this oral surgeon’s simple/logical explanation mostly because I wanted to, as his explanation was less frightening than mine, which was fueled by my fertile imagination which had begun to conjure up a rare incurable immune system disease which would require me to wear a space suit to communicate with friends like in the TV-movie, “The Boy in the Plastic Bubble.” Eventually, however, after the swelling of my left cheeks had completely resolved, we figured I had been on enough cumulative antibiotic medications to stave off even the most resistant of oral infections so within a few weeks, which I thought was our last meeting, I finally received a clean bill of “dental” health.
Wisdom Teeth Inflammation, Take 3 – Time to see a Medical Doctor
A few weeks after my clean bill of health from the oral surgeon and feeling like Frank Sinatra only to soon be publicly exposed as Jerry Lewis, I woke up on a Sunday morning and the right side of my face had swelled just as it had when I initially had the wisdom teeth surgery. This was now 3-4 MONTHS since the surgery and it was the 2nd time since the actual wisdom teeth surgery that my cheeks had gotten so inflamed. First it was the left side and now it was the right side. My new friend, “inflammation,” wasn’t ready to leave yet. When I visited my oral surgeon this time he thought I was either a Vulcan or one of his colleagues was playing a practical joke on him in the spirit of the classic TV show “M*A*S*H” when “Hawkeye” and “Trapper” secretly shortened the length of their prank victim’s pants making him think he was somehow still growing as an adult getting taller each week and then 2-weeks later taking-in his pant’s waist size making him think he was also gaining weight at a precipitous pace.
Feeling like a “Leper” for the 1st Time
This top-notch New York City oral surgeon now didn’t know how to treat me and that’s when my LONG, costly, depressing and lonely journey to being diagnosed with Crohn’s Disease first officially “left the station.” It’s also when I first remember feeling like a medical “leper” as the look in the eyes of this most erudite and confident of oral surgeons exposed his genuine concern for me. I left his office with some rote physician referrals which ranged from other oral surgeons to gastroenterologists to “TMJ” specialists but the sadness in his eyes made me want to call the United States Centers for Disease Control and Prevention (“CDC”) as I feared I had contracted some rare disease which they kept track of to protect the health of the world population to report my condition! But at least I didn’t have to take any more antibiotics because at this point I was spending just as much time in the bathroom as I did out of it due to the painful irritation from the different drugs.
Finding Hope amongst Heartless Physicians
This unpredictable pattern of my cheeks alternately suddenly swelling from one side of my face to the other remarkably continued for several more months puzzling every “specialist” who professed at our initial consultation how he or she would soon diagnose my problem and return a sense of normalcy to my life. The list of specialists included other oral surgeons, neurologists, infectious disease doctors and rheumatologists. Some specialties seemed inappropriate for my overall situation but each came with trusted recommendations whether they were to treat a particular symptom or to diagnose and treat the underlying cause of my medical problem.
In furtherance of their respective specialty, each doctor prescribed one drug or another to help achieve their hypothesized results. But their well-intentioned theories all proved wrong and the drugs were either unsuccessful or they only ramped up the “angry gut” pain I had initially attributed to ingesting the broad array of antibiotics for treatment of my oral surgery woes. Additionally, upon failing to help me, practically every doctor subtly shifted the blame TO ME as if I were responsible for not complying with their projected diagnoses and treatment theories. Only a few compassionate physicians made sure they personally expressed their sincere regret that they couldn’t help me and then genuinely wished me luck on my Diagnosis Journey.
Reflecting upon the “cold” encounters with the heartless physicians, I remember frequently going to bed at night terrified and crying about my apparent hopeless situation and the inimical professionals I might have to rely upon for hope moving forward. But I quickly grew tired of feeling like a “victim” because it just wasn’t in my personality and I’d be damned if I let disinterested 3rd parties make me feel that way. I decided to think positively about the often inhumane experience of being brought to one selfish medical professional after another who cared more about their “diagnostic batting average” than my health. So I focused on the kind physicians who did everything they could to help me and then tried to comfort me when they were unable to do so. There was a lesson to be learned during this part of the Journey which helped me move forward. That is, no matter how bleak a situation, you could always find hope, “in the strangest of places, if you look at it right.” [Lyrics to the song, "Scarlet Begonias," written by Robert Hunter and Jerry Garcia.]
Hiding in Bathrooms to bear down on Pain is not Conducive to Friendships
At this point I also began experiencing unpredictable periods of “explosive” diarrhea (sorry to be so graphic but, it is, what it is) and the pain in my stomach had transformed into more of an intense cramping pain which would often escalate to unprecedented levels making me cry with absolute fright until I was able to have a bowel movement. Going to the bathroom with the expectation of having a bowel movement was now like anticipating “giving birth” and the labor pains were these cramping increasingly severe abdominal pains which made me feel as vulnerable and uncomfortable as a person could feel.
The pain was significantly relieved once I had a bowel movement but sometimes it took up to Ninety (90) minutes for the food and gas to pass through certain areas of my intestines or small bowel. During that unbelievably painful time period I would hide in bathroom stalls to “bear down” on the pain so nobody would see me cry or make the strange faces which naturally evolved from trying to silence such terrifying suffering. When it happened at friend’s houses, they began to think I was a weirdo and the invites to hang out came less and less frequently. My Diagnosis Journey was now affecting my friendships and that caused me emotional pain similar in intensity to the physical pain which kept me hiding out in bathroom stalls. I was a physical and mental wreck.
The Patient Empowerment of Pain
Despite many very knowledgeable doctors concluding there was nothing wrong with me, the tear-inducing, absolutely terrifying and embarrassing bowel movement pain never stopped. In fact, it actually got worse as I took the different medications prescribed by each aforementioned specialist who tried to help me. I never distinguished between the possible effects of different foods because everything I ate seemed to wind up causing the bowel movement pain so at times I stopped eating completely for a day or two out of fear of the eventuality of pain. I simply needed a rest from worrying about where I would be when that pain began. But then I would remember the alternating inflammation of my cheeks and I gave up controlling the pain through my diet.
It just never crossed my mind that my diet could trigger the “labor pains” especially since every doctor I saw focused on my immune system and the worst of the abdominal pains seemed to occur during or just after a round of antibiotics or other prescribed drugs. Notwithstanding the bizarre habits I had acquired as a result of worrying about the pain, the severity of the pain actually reinforced my will to continue on my Diagnosis Journey. It did the same for my parents as I cannot imagine the emotional pain they felt when they repeatedly saw me on the bathroom floor in the fetal position communicating via primal screams with nothing they could do to help me.
Having learned from the often humiliating experiences with the doctors who tried to blame me for my medical troubles when their respective theories proved incorrect, the vivid memories of lying on bathroom floors crawled up into the fetal position in such severe pain always rushed to the front of my mind each time a doctor subsequently tried to blame me for my medical troubles or they questioned my veracity or intentions. I dreaded that pain but ironically it had empowered me with the confidence and determination to handle whatever adversity came my way going forward during my quest to find out what was wrong with me.
Systemic Symptoms Grow & The Plot Thickens
My list of symptoms now grew to include vision issues, unexplained rashes all over my body, arthritis-like joint pain and more frequent bouts of extreme fatigue. I also noticed that when my seasonal hay fever allergies kicked in, all of its symptoms intensified, especially the fatigue. This reminded me of my childhood allergy experiences but there was no feasible answer then, and I hadn’t yet found one now. More importantly, my body’s response to my allergies now included a gastrointestinal response such that my bowels would over-produce gas and cause my gut to become so “distended” to the point where I felt like the “Michelin Man.”
This “Michelin Man” symptom sounds funny but it was HORRIFICALLY PAINFUL as the gas either stayed inside me and triggered those severe cramping pains or it was forced out of me with such pressure that it felt as if I was passing gas AND basketballs such that my rectum became so sore I could barely walk. It was also obviously socially embarrassing and I recall on more than several occasions my Dad having to come to my job to pick me up and drive me home because the slightest movements triggered these painful and embarrassing symptoms. I hid in my office or cubicle until he arrived.
It’s easy to share these symptoms on my Blog thanks to the proliferation of health care social media (“hcsm”) and the positive effect it has had on global awareness of my disease. To that end, if my Diagnosis Journey took place in 2014, I am sure I would have met people on Twitter, Facebook or Google+ who had experienced similar symptoms and I then would have quickly recognized my symptoms as being related to some type of inflammatory bowel disease. But in 1984/1985, I couldn’t articulate these symptoms without sounding like a hypochondriac at best; and insane at worst.
So my parents and I had to “take a step back” and approach the overall situation logically and consider the unsuccessful theories of the various specialists and the increasing gastrointestinal symptoms and their severity in light of the wisdom teeth debacle. After careful consideration, we concluded that the wisdom teeth surgery may have been a diagnostic diversion even though it obviously triggered my underlying medical problem. Therefore, we decided to focus on the gastrointestinal symptoms and locate an experienced gastroenterologist. We also decided that, if necessary, he or she would coordinate my interactions with any other medical specialists. Finally, a “Plan” was developing and an answer had to be in sight. But which Gastroenterologist should we see?
The Cutting-Edge Gastroenterologist & a Hyperbaric Chamber
My Mom and Dad asked everyone they knew who’d ever had an encounter with a GI Doctor (i.e., a gastroenterologist) to recommend someone for me. This included friends, and friends of friends, who suffered from ulcers, spastic colons or hemorrhoids. They also solicited the recommendations of my general doctor (or primary care physician) who by now was familiar with my various bizarre symptoms and likely systemic problem or disease. Despite our methodical approach, it was still difficult to find a gastroenterologist who would take me on as a patient when all of my problems seemed to start as a result of having all four (4) wisdom teeth removed at the same time. After a few false starts and filling out several voluminous Patient History forms for doctors I would never see again, the winner of the “Who Gets to Put their Finger up my Ass” Sweepstakes was a Long Island, New York doctor who had the personality of a handball but the apparent credentials of a genius GI Doctor.
During our first consultation in his office, I noticed Genius GI Doctor practically ignored me and paid most of his attention to my parents. I guess he figured they’d be paying his bills but I thought he crossed a line when he began to rely on my Mom’s well-intentioned animated depiction of where on my abdomen it hurt when I ate certain foods. As soon as she finished talking and gesticulating with her arms to make her point, I firmly, but respectfully, told the doctor to please address ME, since I was his patient. I didn’t blame my Mom because she was just so stressed and trying to bring this GI Doctor up-to-speed ASAP but despite my adult-like respectful edict, I could tell Genius GI Doctor thought I belonged at the “kids table” even though I was 21 or 22 years old and frightened by all that was happening to MY body.
We spent almost an hour in his office telling the doctor all about how the wisdom teeth surgery and the subsequent alternating cheek inflammations seemed to start my medical problems and they had subsequently become “systemic” and always involved my abdomen, in one way or another. He listened patiently enough to my parents to justify his steep Consultation Fee but I‘m not so sure he “heard” them and he certainly ignored me because without even examining me his first conclusion was that I needed a few sessions in a “hyperbaric chamber” where more pressurized and pure oxygen might help repair my compromised immune system. He was emphatic about the hyperbaric chamber but it felt as if he didn’t believe me when I told him how painful the abdominal cramps were because I couldn’t imagine a hyperbaric chamber addressing this problem which was slowly ruining my life. I carefully conveyed this concern to him but he was looking “through me” and just waiting for me to stop talking before he reiterated his focus on the immediate immune system ramifications of the wisdom teeth surgery and the need for me to start hyperbaric sessions as a key successful treatment of my medical problems.
Dealing with a Stubborn, Arrogant Physician and Worried Parents
We were given a few days to digest the GI doctor’s treatment recommendation so my parents and I took advantage of the time to research the medical usages of hyperbaric chambers. In short, it was our understanding that hyperbaric chambers were then being used as an option of last resort to help serious drug addicts or alcoholics who’s abusive lifestyles (through needle-sharing, bottle-sharing and the hard life of living out on the street) had ruined their immune systems to the point where they could not heal from the mildest of illnesses or medical stresses. THAT was not me and I did not appreciate being looked at in such a way. Genius GI Doctor must have concluded there was something “sketchy” about me based on the bizarre alternating cheek inflammations arising from the wisdom teeth surgery. What was worse, Genius GI Doctor, due to his impressive credentials which came along with his “conclusion,” had now planted some doubt about me in my parents’ heads and I had to reverse that to keep them on my side as I desperately needed their support on my “Diagnosis Journey.”
Standing Up for Myself with a Doubting Doctor
I did not like this GI doctor but I didn’t have the heart to ask my Mom and Dad to spend more time and money finding me another GI doctor. Therefore, we returned for the follow-up appointment after a week in which I suffered through several severe bathroom “episodes” and I told the doctor there would be no hyperbaric chamber because I was not a drug addict or an alcoholic and I resented him classifying me as such. He looked at my parents confidently assuming they would agree with him that I was in denial but they backed me 100%. Further, I asked Genius GI Doctor if there were any blood tests I could take to immediately prove I wasn’t a drug addict or an alcoholic because I wanted to move on to finding out what was wrong with me.
I had “partied” a bit in my college days and like all young adults graduating college at the time, I had experimented at different times with “social drugs” but I was a collegiate athlete still in excellent physical condition, that is, except for my “bad stomach” and feisty cheeks Whenever I thought about getting “high” with my friends as a way to escape for just a few hours from my medical problems and thus far unsuccessful Diagnosis Journey, the possibility of that cramping, severe pain in my gut scared me so much, I had even abstained from “social” alcohol and stopped drinking soda fearing either would aggravate my stomach and cause that terrible cramping pain. I guess you could say I was “Scared Straight” – from even drinking soda!
Genius GI Doctor took me up on my offer but with obvious skepticism and he immediately administered a variety of expensive blood tests that day in his office. It seemed as if I was being administered a Lie Detector Test of sorts since in the doctor’s opinion my bizarre symptoms did not seem to match up with my verbal account of the story. A few days later he called me with concern that some of my blood counts were abnormally too high and some were too low which typically meant I was fighting some type of infection or inflammation and/or I might also be bleeding inside my bowel. The topic of drugs and alcohol never came up again and to this day I have never heard the term “hyperbaric chamber” mentioned by a physician. I knew my body and was confident I was healthy and didn’t belong in a hyperbaric chamber but I wanted those blood tests performed on me more to boost my parent’s confidence in me after all the doubt Genius GI Doctor had possibly instilled in them when he attacked my character without scientific cause. After all, without my parents’ support in 1984 and 1985 during my Diagnosis Journey, I might have suffered for several more YEARS before being properly diagnosed with Severe Crohn’s Disease.
Right Diagnostic Tests but Wrong Conclusions
Genius GI Doctor’s concerns about my blood work prompted him to perform a few abdominal-focused diagnostic tests on me. These tests included a GI Series, an Endoscopy and a Colonoscopy. He seemed to believe me now, but then again, he still had the personality of a handball so it was hard to tell what he was truly thinking. Nevertheless, he was clearly “covering all bases” to hopefully provide an explanation for my symptoms and I was glad someone was being so genuinely interested and comprehensive about my medical problems. Unfortunately, and for reasons I will never understand, all of these tests were essentially negative besides showing minor “sores” and “abrasions” in my small bowel and duodenum.
Granted, these abdominal conditions required medical attention and medication but my blood work seemed to indicate much more serious conditions but these traditionally accurate tests concluded there was nothing substantially wrong with my bowels or intestines which would explain my continued complaints of a severe cramping pain, unpredictable diarrhea, joint pain and extreme fatigue. Looking back, I also never had a fever or significant weight loss and I think every doctor who examined me put too much emphasis on their absence as symptoms almost as if they were integral ingredients to a serious systemic gastrointestinal diagnosis.
Based on my understanding of the typical symptoms of Crohn’s Disease, fever, weight loss and loss of appetite are usually a part of “flare-ups” but in 30 years with Crohn’s Disease, I have rarely had any of them accompany a flare-up. Much about my symptoms or absence of symptoms was atypical for common gastrointestinal diagnoses beginning with the recurrent cheek inflammations to the lack of significant weight loss as I somehow kept up my athletic build. I was often too tired to exercise but when I was able to work-out or play ball, I lost myself in it as a coping mechanism for all I was going through. That made me look “fit” and not nearly as sick as I honestly portrayed myself to doctors.
I remember feeling unlucky that these tests did not portray the realities of my day-to-day struggles but then it just didn’t feel right to wish for serious symptoms to be revealed by these tests. Who knows, I could have been diagnosed with Colon Cancer if the right symptoms appeared during these diagnostic tests. It was a strange feeling hoping for medical corroboration of my symptoms and simultaneously praying nothing too serious showed up on my tests. On the one hand, I’d feel lucky if my complaints were validated but on the other, I’d be devastated if I were told I had some incurable disease. They say not to wish for things because you might just get them and that’s the mental approach I tried to maintain. After all, who wants symptoms of an incurable disease? However, nothing in my life would change without medical evidence which explained my symptoms.
“It’s All in Your Head” – Hello Shrink
Nevertheless, my parents and I were devastated when these invasive diagnostic tests were negative and wondered if they were simply administered at a time when whatever disease I had was inactive. The GI Doctor did not share my optimistic approach and was forced to conclude I was physically fine. Sensing my grave disappointment, my parents initiated a meeting with Genius GI Doctor to determine what I could do next to get to the bottom of what was wrong with me. They had seen me scream and cry on the bathroom floor too many times to question my pursuit for an answer and treatment so they went into this meeting thinking there must be a GI specialist I could see who could perform different tests. I felt the same way.
Feeling Hopeless, Losing my Composure & Perceptive Parents
Perhaps Genius GI Doctor needed to witness one of my “flare-ups” to be similarly motivated because during the meeting he all but called me a liar and rather confidently concluded I was someone who craved the attention of being sick and he did not appreciate me wasting his time. His suggested solution, which this time he directed at my parents as if I was actually sitting at that kid’s table, was for me to see a Psychologist. He was all but calling me a bullshit artist in front of my parents and I started to cry in his office. The combination of my feeling hopeless and hating this doctor and all the previous doctors who doubted me, overwhelmed me and I completely lost my composure.
There is nothing more frustrating than feeling such severe palpable pain and experiencing obvious abnormal medical symptoms like the recurring cheek inflammation episodes only to be told it is “all in your head.” Through my tears in the office, I could tell my parents were now also put off by the arrogant style of Genius GI Doctor. Despite the underwhelming results of the objective diagnostic tests, they were not satisfied with his “Psychologist conclusion” after all the bathroom “episodes” and extreme lethargy periods they had seen me go through. They also recognized how my Diagnosis Journey had begun to compromise some of my most prized friendships yet I never flinched in my pursuit of an answer. Since I was a kid, my friends meant the world to me so I guess my parents were quite perceptive as to the physical and emotional toll my medical problems were taking on me because I would never jeopardize certain friendships, but I had done exactly that.
As my Dad was speechless masking his utter frustration and empathy for me, my Mom politely inquired about additional different diagnostic tests but she was abruptly shut down by Genius GI Doctor before she finished her sentence. He did, however, add that he was certainly available in the future if my symptoms changed or if I had a medical emergency.
We left his office shocked by the reality of my medical symptoms yet the inability for them to be diagnosed. While prefacing their opinion that they did not at all agree with Genius GI Doctor, my parents suggested I give deep thought to seeing a Psychologist because I was going through a great deal and could certainly use the professional support. I had zero interest in seeing a Mental Doctor when my physical problems were getting so severe that I was afraid to leave my house for fear of having that severe, cramping abdominal pain at work, in school, on the train, etc. Besides, I wondered aloud rhetorically, “How could a Psychologist help me with that?”
My parents had no response but I could tell I needed to exhaust this option if only to show my parents, and biggest supporters, that I was willing to try anything to get to the cause of my medical problems. We also agreed that I would soon see another highly recommended infectious disease doctor but that experience proved more futile than the one with the Genius GI Doctor as he didn’t take me seriously at all and practically laughed me out of his office telling me I should be thankful I don’t have problems which required his care. All I could think about when we left his office was whether this infectious disease doctor would appreciate having his sick, petrified child treated in the same imperious and condescending manner?
Wasting Time with a Psychologist
I chose a local psychologist so that it wouldn’t dramatically affect my life schedule. Our weekly appointments were held in an office attached to his home which had a separate entrance. Initially, he appeared to be a nice, kind older gentleman who treated me with respect. But from day one, I could tell he was hell-bent on blaming my “Type A” personality for causing my abdominal problems. To support that initial “diagnosis,” he would often ask me leading questions regarding how I resolved disputes or coped with stress and he somehow always found a way to connect my assertive personality with the stomach pain I was experiencing. Some days I would come in explaining how I spent the entire previous night lying on the bathroom floor in agony with severe abdominal cramps. As I spoke, he listened intently simultaneously jotting down his observations but no matter what he wrote, his verbal conclusion was always that my intense personality was to blame for my medical problems. If I didn’t have the confidence of my convictions and wasn’t empowered by the fresh memory of my pain to laugh at his poorly veiled attempt to manipulate me, I might have left his office thinking I was to blame for all I had been through the past year or eighteen (18) months.
Passive-Aggressive Manipulation by a Psychologist
With clock-like precision as if he had planned it from the beginning of the week’s session, a bell would ring signifying the end of the fifty (50) minute session just as I was ready to respond to his insulting and condescending insights. I had heard of the term, “passive-aggressive,” but never knew what it meant until my dealings with this Psychologist. I even tried to look up its definition in a dictionary but it was clearly one of those things you had to experience to understand. In that regard, I understood it quite clearly ever since I met this man and I despised being treated in such a manner by a professional who has the ability to shape minds and influence a person’s decision-making especially after all I had been through since the wisdom teeth surgery.
Accordingly, in what I believe was our last “professional” session, I started the session by “respectfully” accusing him of manipulating me in a passive-aggressive manner to make me think me and my personality were the cause of my medical problems just because they had not yet been substantiated by medical doctors. I paid special attention to my “tone” as I wanted to come across as calm and confident as opposed to the patronizing manner in which he spoke to me. I also did not want to appear desperate even though I had no idea what I was going to do after I “fired” him.
I also asked him if he thought my “Type A” personality had caused my cheeks to get abnormally inflamed after the wisdom teeth surgery and subsequently recur on different sides of my face, weeks and months later. I never raised my voice or became disrespectful to him in any way. I stayed true to my intentions and hoped he respected my frankness such that he’d finally address me “man-to-man.” Unfortunately, what I thought was a courageous gesture by me was treated as if I was making polite, irrelevant inquires about his pet. He just looked up from his notes with the same deceptive smile he had worn since the first day we met and ignored my direct questions. When he started to speak he asked me why I felt the need to question him as if the content of my question was of no concern to him.
Until we meet again Mr. Manipulating Psychologist
I told him I wanted answers to my questions since they addressed the exact reason for my presence in his office. I was not interested in playing some psycho-babble game with him as I was seeking answers to my underlying medical problems while he was manipulating my now desperate Diagnosis Journey for money. Finally, his deliberate silence and then patronizing tone and phony smile were too much for me to bear and I firmly, and again, respectfully, demanded answers to my questions, but this time in a louder tone. Naturally, time ran out again as his “session clock” alarm bell went off. Without skipping a beat, he closed the notebook in which he had been recording his observations about me, stood up and with a smile on his face said something to the effect of, “I think that was a very productive session and next session we’ll pick it up just where we left it.”
Since my efforts to get direct answers from him were a complete waste of time, my frustration got the better of me and I got closer to him to ensure he LISTENED to everything I had to say. He was a little intimidated by the rage evidently showing from the way in which I had confronted him and I told him I did not respect or like him from the get-go because before he even met me he had concluded that my medical problems were “in my head” or the result of my intense personality, when at that time, he knew nothing about me. He just smiled in an effort to diffuse the situation and said something like, “We’ll pick that up as well next time.” We sure did, as you will shortly see.
Taking A Break from the Diagnosis Journey
Longer story short, I took a break from seeing the Shrink after that last encounter because I was tired of his condescending attitude and made-up mind about me. I also thought it was a waste of my time and money, both of which I desperately needed to continue my Diagnosis Journey. I had kept my parents in the loop the entire time so they acknowledged my good faith attempt at seeking Psychological Counseling. In retrospect, it was just the WRONG Psychologist because I have since seen many friends and patients benefit tremendously from the wonderful effects of Counseling but it/he just didn’t work for me. So I decided to focus the next few weeks on my job and tried to live as if I no longer had these medical problems. Naturally, my impression of a Pollyanna didn’t last long but at least I was able to focus on my job and my Diagnosis Journey was temporarily placed on hold. I feared the repercussions, but then again, I was having “flare-ups” while actively engaged in the Diagnosis Journey so I didn’t see the the difference except the prioritizing of my job which had been “second chair” to my medical problems for quite some time and I needed to solidify my professional position. I also thought maybe it was time to let things “come to me” for a change instead of chasing the wrong doctors or taking the wrong medications.
How my Diagnosis Journey affected my Professional Life
It was a normal work day, late afternoon at my first significant job in New York City and a colleague’s birthday was being celebrated. I didn’t know most of these people very well because while I had worked there a little less than eighteen (18) months, I kept to myself because my medical problems had created what others might have thought was “special treatment” so I wanted to “keep my distance” and not reveal too much information since I was still in the dark about it. But the office fostered a nice atmosphere and I felt like I belonged and was anxious to see where the opportunity led. My medical problems had wreaked havoc on my professional life in terms of the time off I needed to get well or to manage the increasing systemic symptoms. But the owners of this business liked me and understood my unsettled situation and they even let me work from home when I needed to. As long as I completed my work on time, no questions were asked. I was very appreciative of their understanding and when I was able to work without medical interruptions, I came early, left late and worked hard. I also made sure that when I worked from home, I always accomplished significantly more than what was expected of me. But even under those flexible circumstances, I knew I was low on the totem pole and any additional extended absences or the continued need for the flexibility to work from home would force them to terminate me due to the precedent it set and the subsequent likely unwanted similar requests from other employees.
Flavored Popcorn leads to my Diagnosis Destination
After a productive day of work, I put my medical troubles away and decided to partake in this colleague’s birthday festivities. I remember I nursed a beer while I tried to be very careful about what I ate for fear of initiating a “flare-up” at the office. At the time, flavored popcorn had become quite popular so this “hip” New York City business had every popcorn flavor available. I was never a big popcorn fan but everyone was talking about the flavored popcorn and with a little prodding from a pretty co-worker who was my only true friend there, I sampled a few different flavors to “fit in” and everything seemed to be fine. Approximately 20 minutes after I had eaten the first popcorn flavor, I began to feel an extremely painful sensation I had never experienced before as it felt like my intestines were “twisted.” It mimicked the severe cramping pain I was familiar with so I was able to smile in-between cramps but when the cramps were at full strength there was no facial expression I knew of to mask my pain or fear because if the pain got any worse I thought I would pass out or my stomach would burst. In another 10 or 15 minutes, the severity of the pain quickly intensified even more as I imagine the other popcorn flavors were similarly affecting my intestines so I quickly found the office bathroom and prayed for a bowel movement so that the pain would ease or leave my system completely. Unfortunately, it didn’t work like that and devising that genius plan was the last thing I remembered happening at the office party.
Being Hospitalized directly from an Office Party is not a good Career Move
Apparently, I was rushed by ambulance to the closest hospital and after the Office Manager had contacted “my loved ones,” my out-of-her-mind in fear Mom called good old Genius GI Doctor begging for his help and he was kind enough to quickly contact a close GI colleague of his who had privileges at the hospital and he made sure I was well taken care of. When my Mom explained to Genius GI Doctor what had happened, he assured her I would be fine and he also told my Mom to tell me that he wished me well. That was nice of him. What I do remember is being “handled” by EMT gentlemen back at the office and going in and out of consciousness. Each time I was awake I couldn’t help but scream about the pain. It felt like my intestines were sure to explode with each successive cramp. Thankfully they kept giving me medication for the pain and each time they did, I fell back asleep.
I imagine I was sedated and/or sleeping for 2 days or so because the pretty co-worker visited me in the hospital a few days later and she provided a blow-by-blow account of my afternoon/night at the office. Listening to her account of my actions at this office made me cringe but I could tell by the tone in her voice that she and my co-workers were concerned about me and I had done nothing wrong. I also had a little crush on my pretty co-worker and now it felt like the feeling was mutual. I even joked around with her that I had been trying to get her alone so we could really talk and nothing else worked so … Probably a cute or funny line under the proper circumstances but certainly not effective lying in a hospital bed in a basically see-through hospital gown with an “NG Tube” running through my nose into my stomach to slowly siphon out anything in my intestines.
She went on to tell me she knew I had gone to the office bathroom because I had excused myself from talking to her to go to the bathroom but she never saw me again and wondered where I was. For some reason that jolted my memory, and with her assistance filling in some of my memory holes, I started to remember I was lying down in the bathroom for a long time and to avoid the embarrassment of another co-worker seeing me in such a compromised state, I did lock the door. But the pain became so intense that I passed out and was unresponsive each time someone tried to figure out why they couldn’t get into the bathroom. After several people tried to use the bathroom but couldn’t, the Office Manager came over and heard NOTHING coming from the bathroom and then my pretty colleague publicly remarked she hadn’t seen me since I went to the bathroom. It quickly became obvious that it was ME in the bathroom and I was in serious medical trouble so they broke the door down and found me passed out lying on my left side in the fetal position.
Diagnosis & Validation by a Crohn’s & Colitis Foundation (CCFA) Brochure
I had suffered an intestinal obstruction which was brought on by the popcorn. The pain was so severe that I was heavily sedated for a few days before they could even perform various diagnostic tests to figure out why I obstructed from the popcorn. These situations are treated much differently these days but in 1985 I was given shots of the powerful narcotic Demerol every 3 hours and I was a zombie for several days. I also had an “NG Tube” placed into my intestines through my nose to siphon out all the fluid above the obstruction to lessen the pressure which was causing all the pain. The hope was that the continued combination of not eating or drinking, the insertion of the NG Tube and around-the-clock intravenous steroid drugs to decrease the inflammation in my intestines would alleviate the obstruction so I could tolerate drinking various foul-tasting radio-graphic fluids so the doctors could perform the necessary diagnostic tests. This process took 5 or 6 days and then a day or so later my new GI Doctor came into my room and told me and my parents that I had a classic case of an incurable, autoimmune, Inflammatory Bowel Disease (“IBD”) called Crohn’s.
Each word of the diagnosis was shocking and scary especially since we couldn’t even spell the name of disease and had never heard of it. Then the doctor handed my Mom and I a pamphlet published by the CCFA which explained the various symptoms of Crohn’s Disease and it was like reading a description of all I had experienced the past 18 months. From the inability to fight inflammation to the unpredictable exhaustion to the intolerable severe cramping pain during a flare-up, I strangely felt validated by this very scary description of a disease I now had to contend with for the rest of my life. Also, as it turned out, eating popcorn is one of the most dangerous things to do with Crohn’s Disease because the intestines can’t digest it and as a result they become painfully inflamed. To that end, I have never eaten Popcorn since that day almost 30 years ago.
But just as my Mom and I had finished discussing the amazing similarity between the CCFA pamphlet description of Crohn’s Disease symptoms and the symptoms I had as a child and then for the past 18 months as an adult, the hospital room phone rang. Amazingly, it was the Shrink.
“Do you see what you did to yourself now?”
The Shrink had heard I was rushed to the hospital by ambulance and at first expressed his sincere concern and then made sure I was alright. I was friendly and appreciative of his call. But after the pleasantries were concluded and he had confirmed I was okay, he asked rather sternly, “Do you see what you did to yourself now?” Having just been validated by the CCFA brochure and been diagnosed by every conceivable diagnostic test with an incurable, painful, autoimmune disease called Crohn’s, I was INCENSED and I ripped the phone out of the hospital room wall.
After I recovered for a few weeks and had read all I could about Crohn’s Disease and IBD, I made another appointment to see the Shrink. His office treated me like a returning patient coming home to the sage prophet but little did they know I was returning to get a REFUND of all the money I paid to see him as he had no business treating patients with Crohn’s Disease because he obviously knew nothing about it. The day of the appointment came and I calmly greeted him and sat down. He went directly into his mellow passive-aggressive attack on me and I firmly told him to “Shut up. I want ALL my money back for each of the sessions you ‘counseled’ me on because you are unqualified to counsel people who have Crohn’s Disease or any other type of Inflammatory Bowel Disease.”
He contemplated my statement as if it were a suggestion and told me it’s good to express my thoughts even if they are antagonistic. I reiterated I wasn’t kidding and I told him that I would report him to his State Licensing Board if he did not refund all of my money within 30 days and/or if I heard he took on another Crohn’s Disease or IBD case without legitimate proof that he took some type of official continuing education class about treating such patients. I stood up to leave and he went to shake my hand but I refused and left. My complete refund arrived in my mail box two (2) weeks later.
Thanks Mom and Dad.