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 age1988 – 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 1st 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 1st “Dean’s Award” for Unique and Outstanding contributions to the school and the student community.
  • 29 years of age1992 – 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 age1999 – 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 10th 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 age2011 – 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!