MAW PPP Dec 21 2012

May 22, 2013 – Please pardon the recent inconsistent entries but I have been battling a rare and unpredictable lung condition related to my Crohn’s Disease which currently limits my ability to function on “all 8s.”  In the future, I plan to invite some Guest Bloggers to share their perspectives on Managing Chronic Illness.  I am hoping things will return back to normal during the summer sometime.  Thanks for your patience.

What are “Invisible Effects” of Crohn’s & IBD?

Due to the proliferation of health care social media and the relentless efforts of various Patient Advocates, Patients and well-intending organizations like the Crohn’s & Colitis Foundation (i.e., the “CCFA”), people are now generally familiar with the physical effects of Crohn’s Disease and the associated challenges it places on its patients.  To be clear, though, some use the terms “IBD,” or Inflammatory Bowel Disease, and Crohn’s Disease interchangeably, when technically IBD is a “catch-all” term for digestive diseases which have an inflammatory component.  More accurately, Crohn’s Disease and Ulcerative Colitis primarily make up IBD but there are other IBD conditions.  That said, people without Crohn’s Disease or IBD never learn of the “Invisible Effects” these often pervasive diseases cause the patient to bear.  These Invisible Effects are not shared with family and friends because, for the most part, they are not “medical” and thus require the patient’s attention to “lifestyle issues” in an attempt to live life as normally as possible.  And let’s face it, who wants to hear about why a person or patient must have their Credit Cards on automatic bank account payment due to the unpredictability of emergency hospitalizations and disabling medical conditions?

 Why these “Invisible Effects” of Crohn’s and IBD are known by few

There is an almost intuitive and inherent fear amongst many Crohn’s Disease patients that friends and family would be “pushed away” if they understood what their day-to-day managing of these Invisible Effects actually entailed, almost as if the cumulative amount of the effects of Crohn’s Disease could reach a friendship or relationship “tipping point.”  After all, people by their nature want to be supportive but the conversation would always be one-sided if the loved one starts by asking the Crohn’s patient, “How are you doing?”  A Crohn’s or IBD patient couldn’t possibly accurately answer that question without touching upon these “Invisible Effects.”  The conversational standard for answering that question admittedly is superficial as the question has morphed more into a greeting than a genuine probe into a person’s well-being but therein lies the unique heretofore “silent” problems faced by Crohn’s and IBD patients.  Accordingly, I thought it would be enlightening for people who care about those with Crohn’s or IBD to see things from the patient perspective and in the process expose these “Invisible Effects” of Crohn’s Disease for the purposes of better understanding the unique but silent challenges Crohn’s and IBD patients bravely face.  I have listed many of them below with highlighted Sub-paragraph headings and succinctly elaborated beneath them where appropriate.

 The Mainstream does not truly understand the cause or triggers of Crohn’s Disease placing enormous & unwarranted guilt, pressure and emotional stress on patients and this lack of knowledge can cause devastating “Crohn’s Disease diagnosis journeys”. 

The poor education of the mainstream about the cause and treatment of Crohn’s and IBD forces patients to respond to questions or accusations related to changing a diet to “cure” Crohn’s and, worse, that they CAUSED IT with a poor diet or poor stress management skills.  Worse, some people, even some naive medical professionals, tell some Crohn’s patients prior to, and even after, diagnosis that the pain is “in your head” and not real.  Unfortunately, this “in your head” theory gets dispelled when the patient is rushed to the hospital emergency room for surgery to repair narrow bowels or twisted intestines.

For me, this happened in my early 20s and I could sense that the various doctors’ skepticism crept into the thinking of my family because, after all, nothing medical seemed to explain my extreme fatigue, abdominal pain, severe joint pain and inability to heal from common wisdom teeth dental surgery.  I even indulged my physicians’ recommendation to begin seeing a local psychologist because I wanted to find an answer to my medical problem and I knew I had to first exhaust every one of their ridiculous non-medical theories.  From my perspective, what was happening to me and my body was so palpable that I knew there had to be an underlying medical explanation.  But I knew I wouldn’t be taken seriously until I soothed the egos of the doctors treating me and eliminated each of their theories, one-by-one.

The first consensus amongst the “medical” physicians was for me to see a local psychologist to address my apparent need for attention by complaining about so many physical problems.  It’s hard for me some 30 years later to now convey how angry I was at the medical establishment for not “believing me” but I remember taking solace in my body being the best measurement of my medical condition and that it was only a matter of time for it to talk loud enough for the doctors to hear.  I lived this lie for several months after consulting with more and more doctors in and around New York City who also thought I was a hypochondriac since all superficial diagnostic tests were negative.

Mind you, my sessions with the local psychologist were a complete waste of time as he spent more time taking about my mother and father than he did on why I was feeling the way I did.  One day, however, I ate flavored popcorn at an office function of a job in New York City I had just started.  Shortly after my body started digesting the popcorn I experienced such severe pain that I ventured into the bathroom and locked the door.  To this day, I have no idea why I chose the bathroom for refuge but I imagine the stomach pain was so severe that I anticipated painful digestive repercussions.  The next thing I remember was waking up in an ambulance on my way to the local hospital.  The pain was so severe that it trumped the office embarrassment of getting so sick and needing help from people I barely knew and to this day I’m not sure if I ever went back to that office or thanked those kind people who looked out for my safety.  If for some odd reason I neglected to thank them, I hope they are reading this for that experience changed my life.

A few days later the attending gastroenterologist (GI) came into my room and showed me the results of some diagnostic tests which revealed I had something called “Crohn’s Disease.”  I had never heard of it so he handed me some informative brochures published by the CCFA.  As I read the brochures, each paragraph empowered me more and more as it described EXACTLY what I had been experiencing the past few months including the abdominal pain, extreme lethargy, joint pain and inability to heal properly from a common medical/dental procedure such as the extraction of all four (4) wisdom teeth.  As if on cue from a movie as I was contemplating my future with this new sidekick, a few minutes later the phone rang in my hospital room and it was the local psychologist I had been seeing.  He apparently obtained the phone number from my Mom when I failed to show up for two (2) consecutively weekly appointments (I was hospitalized for almost three [3] weeks).  He first appropriately inquired as to the status of my health and conveyed his well wishes for a speedy recovery but then he uttered the following words which changed my life: “Michael, do you see what you did to yourself now?

I hung up on the local psychologist, actually I slammed the phone down while the psychologist was still speaking, and in doing so acquired the beginning of the confidence I would need to cope with my Crohn’s Disease as it got more severe in my 30s and 40s (I obviously still had much to learn about the composure part).  My family’s confidence in my coping abilities followed soon thereafter.  They had temporarily “abandoned” my logic in “listening to my body” although they never gave up on “supporting me” except they chose to follow what the doctors were saying instead of my body’s reaction to the situation.  I couldn’t blame them as they couldn’t “feel” what I was feeling and they were heeding the advice of experienced medical professionals.   Besides, they never stopped loving me so what beef could I possibly have with them?  None.

This was my “Crohn’s diagnosis journey” and thankfully it was relatively short in time duration but it took me through some VERY depressed periods where I knew even my family and friends doubted me.  I was also acutely aware that if I was wrong in trusting my body I was likely going to be labeled a hypochondriac and attention-seeker for the rest of my life and risk never being taken seriously again.  Well, MANY Crohn’s patients experience much longer “diagnosis journeys” and their self-confidence is tested even more than mine was.  This “Crohn’s diagnosis journey” is a situation which still exists due to the mainstream’s poor understanding of Crohn’s and IBD.   For many people, particularly those who reside in rural areas where doctors see a minimal number of Crohn’s cases and thus are not as sharp in spotting it especially when it is a complex Crohn’s case seemingly masked as some other more obvious disease, obtaining a correct diagnosis of Crohn’s or IBD can be a tortuous, time-consuming, expensive and emotionally devastating process.

But you look so good?

Crohn’s itself has been described as an “Invisible Illness” because the patient’s superficial appearance can have nothing to do with his or her internal intestinal health.  I’ve tried to train friends and family that how I look often has nothing to do with how I feel but human nature being what it is; people tend to believe what they SEE and not what they HEAR.  I have lost friendships over this issue after I’ve socialized with them on a Friday night only to have to cancel on their child’s Bar-Mitzvah on a Sunday due to an unexpected disabling Crohn’s flare-up.   People sometimes don’t trust that which they can’t understand and if many doctors don’t truly understand Crohn’s, I’ve come to understand that this can happen even with friends and family.  That said, over time I have developed a circle of close friends who understand when I don’t or can’t attend something.   Strangely, this Invisible Effect of Crohn’s has weeded out superficial and narcissistic friends and has become somewhat like “x-ray vision” into providing me with perspective into the quality of people I encounter.  Still, this has affected some former very close friendships of mine simply because Crohn’s can be an “Invisible Illness” and sometimes I wish there was an objective way to communicate sincerity.  I maintain this same position with respect to an objective scale for levels of Pain such that a doctor could understand my Pain and treat me accordingly.

Lack of Consistency in Personal and Professional Lives.  

A main characteristic about Crohn’s Disease is that it is “consistently inconsistent” and that makes planning ANYTHING a risky proposition. In business, this can ruin relationships especially in an economy where patience is no longer an option.  In personal relationships, the need to cancel on cheerful events too many times could force the Crohn’s patient to the back of the address invite book until they finally are no longer called to participate in such events as the former friend simply assumes their “Yes” or “No” can’t be counted upon.  As mentioned above, however, as I matured Crohn’s Disease eventually gave me laser-like perspective about who was and wasn’t a true friend for frequently cancelling on attending birthday parties and weddings should not equal a friendship-ending foul.

Doctors always having a “crutch” when a seemingly unrelated medical problem isn’t easily diagnosed. 

Once a doctor knows you have Crohn’s Disease, it has been my experience that they can stop searching for answers to certain medical problems which are difficult to diagnose.  They blame Crohn’s Disease when with other patients they might probe further.  This is medically dangerous and disrespectful to a Crohn’s Disease patient.  After all, if a man in a wheelchair came in to see a doctor complaining of kidney stone-type pain, I would hope that doctor wouldn’t blame the immobility of being in a wheelchair.  In the case of a Crohn’s patient, a very common referral for any ailment is to a Rheumatologist due to the predominant Crohn’s characteristic being the patient’s autoimmune issues and compromised immune system.  Oftentimes, however, Crohn’s patients know their bodies better than new doctors do and if a patient thinks he or she has a kidney stone and has a history of such, I would hope the doctor would refer the patient to a urologist instead of a rheumatologist but a Crohn’s patient may have to advocate in a vigilant manner for that to happen.  In summary, the Crohn’s or IBD patient must also be his or her own Patient Advocate when seeing medical professionals about new ailments because too often is the case when they are referred to a rheumatologist due to their compromised immune system.

Getting treated by non-GI doctors and having to explain why you might need stronger or longer antibiotics due to your weak immune system. 

Some new doctors or physicians you are not familiar with don’t want to believe the unique medical effects of your Crohn’s Disease which you are all too familiar with having lived with the disease for many years.  So when you suggest a stronger antibiotic or longer course of antibiotic based on your prior experience, they often refuse to give Crohn’s its due deference.  This is like a doctor prescribing additional aerobic exercise to a patient who has a history of asthma and ignoring the patent’s input about his or her inability to do any more exercise as a result of its effects on his or her ability to breathe.  In the asthma case, doctors listen so why are the unique medical effects of Crohn’s Disease often overlooked by doctors?

Side Effects from Biologics.

Over the past few years, researchers have identified a common vulnerability in Crohn’s Disease patients which causes their immune system to attack THEMSELVES when they should be attacking the outside abnormality such as Allergies, the Flu, etc.  This created a form of potent drugs which, when successful, often puts Crohn’s Disease into Remission for relatively long periods of time. These drugs are Remicade, Humira, Cimzia and Tysabri.  While these drugs do help MANY patients, they also can cause serious and frequent side effects in patients such as Cancer, lethal Fungal Lung Infections and other serious to severe Respiratory Conditions.  Not everyone who takes these drugs is vulnerable to these side effects, but one can reasonably opine that it seems the FDA underestimated the severity and frequency of these side effects when they approved these drugs for usage in treating Crohn’s Disease.

As a result, the FDA has subsequently issued “Black Box Warnings” on these drugs, primarily on Humira and Cimzia, which require the manufacturers to CLEARLY list on the drug’s packaging that the drug has, and can, cause such lethal side effects. In full disclosure, I am a patient who is suffering from a severe lung infection which the Pathology Department at the Mayo Clinic has been unable to define and which in the past has required me to undergo chemotherapy to save my life.  I can’t “prove” this strange and possible lethal lung infection came from Humira or Cimzia (both of which I took for my Crohn’s) BUT when one of the world’s most prominent health institutions writes in a Pathology Report after a surgical lung biopsy that they can’t specifically identify the source or name of the obvious harmful lung problem, it is a logical leap to assume this had to be caused by the Biologics since nothing else in my life has changed.

The FDA felt the increasing need to convey the importance of these Black Box Warnings and took to YouTube in an attempt to reach the most Crohn’s patients since many were being passively influenced by the TV Commercials for the drug Humira which in the first 15 seconds of its TV commercial VISUALLY highlights the potential lifestyle changing effects of taking the drug but in the remaining 15 or 30 seconds uses a “mechanical” and monotonous VOICE-OVER technique to convey the legally required SIDE EFFECTS.  Accordingly, the Humira TV commercial is approximately 1/3 advertisement and 2/3 Legal Disclaimer.

But trying to take an objective perspective, I fear the incurability of Crohn’s Disease combined with the FACT that these Biologics do help MANY people created an environment whereby the FDA approved the drugs probably prematurely because they figured if it helps many people “get back their life” even at the expense of several others experiencing disabling side effects, it was a worthwhile trade-off.  However, the FDA’s subsequent increased vigilance in informing the public about the seriousness and frequency of these side effects seems to indicate that increased Patient Data and History is possibly making the FDA rethink their original position I’ve articulated above.  Contrarily, over recent years the FDA has been successfully lobbied by the manufacturers of Humira, namely Abbott Industries, to expand the application of Humira to Pediatric Crohn’s Disease (in Europe) and to Ulcerative Colitis in the US.  It is a convoluted situation which helps many Crohn’s patients and disables some or many others.

While Biologics seem to be the last line of defense for many Crohn’s patients, I pray it works for them.  However, there are other researchers pursuing different underlying pathologies which would result in drugs which might make Biologics extinct.  Only time will tell. Alternatively, it is also possible that the manufacturers of Biologics will “refine” their drugs to mitigate the aforementioned severity and frequency of their side effects.  The takeaway from this sub-paragraph is that even the lifestyle-saving or remission-inducing Crohn’s and IBD Biologic treatment drugs come at a controversial cost which is still not entirely understood.  That said, if I were a patient with no options but Humira, having exhausted all other treatment options, I would want to be enthusiastic and positive about the drug’s chances to help me.  But if this type of Crohn’s patient were being fair, he or she couldn’t honestly take such a position although they MUST.  I wish that weren’t the case but that is what Crohn’s and IBD patients must deal with and I think the public and mainstream is unaware of how brave these types of Crohn’s and IBD patients must be.

Automatized Credit Card payment schedule.

Years ago when I was in and out of hospitals with the same frequency and unpredictability as Lady Gaga’s wardrobe changes, I was always late on paying my credit cards and had to pay a $25.00 late fee after being late more than 2 or 3 times on paying any one credit card.  Having Credit was and is vital to my survival since I always need a credit card to host medical debt which surpasses my liquidity.  To preserve that Credit, I was forced to set up automatic payment mechanisms tied to a bank account.  This way all I had to do was make sure the bank account had a high enough balance at the end of the month.  This solved the credit card Late Fee problem but it limits my financial planning and liquidity.  Perhaps not a big deal to people with an overflow of money but just another thing a Crohn’s and IBD patient must attend to or risk losing the Credit he or she needs to pay for the expensive medical treatment he or she will undoubtedly require in the future.

Your Degree of Pain is always challenged and having a Pain Management Doctor can unfairly label you a drug addict or drug seeker.  

Since Crohn’s Disease has such a broad-spectrum “Severity Scale,” many medical professionals assume you are on the low end as there is no way to objectively determine how bad you are suffering and they want to protect themselves from patients with addiction problems looking to use their diagnosis of Crohn’s or IBD as a license to get narcotics every month.  Responsible pain management doctors also only want to dispense the least amount of narcotics as is necessary.  Additionally, narcotics and opioids, while helpful as painkillers, also take a serious toll on the digestive system as they slow the body’s natural process of “Peristalsis” which moves chewed items down the digestive track.  This interruption in the digestive track can complicate Crohn’s and IBD and for that reason Gastroenterologists (GIs) don’t like prescribing them.  But they are the most effective painkillers, especially when Crohn’s and IBD patients can’t take anti-inflammatory over-the-counter painkillers because they are even more abrasive on the digestive track, and without them patients with Severe Crohn’s pain would suffer in a way tantamount to cruel and unusual punishment.

Still, this reality often causes some Gastroenterologists to refuse to prescribe opioid painkillers and/or to even inform the Crohn’s patient that there exists a specialty of doctors who practice “Pain Management” responsibly. I have been outspoken on this issue because once I learned of the Pain Management specialty and found a trusted and respected Pain Management Doctor, I chose to become somewhat “dependent” on painkillers so that my Crohn’s wouldn’t keep me on the couch while my friends or family were busy making life memories on celebratory occasions.

While under the care of a duly licensed and responsible Pain Management Doctor, I have also learned of the difference between “dependence” and “addiction.”  Many Crohn’s patients become “dependent” on narcotics or opioids to maintain some semblance of a quality of life or normal lifestyle.  I chose that path for many years and I relied upon my medical professional to identify if I ever wavered into the area of “addiction” as it can be a slippery slope.  However, that is exactly why I chose to be monitored by a Pain Management physician.  I was able to do this because I was always 100% candid with my Pain Management doctor.  With such an option available for Crohn’s patients, I am ASTONISHED at the number of emails and communications I receive from Crohn’s patients around the world who tell me that their GI doctors will not address their pain, so what should they do?  My heart aches for these Crohn’s and IBD patients.

To choose Pain Management to maintain some degree of quality of life despite Severe Crohn’s Disease, the patient must sign a Contract with the doctor that requires the patient to see the doctor once a month, use the same pharmacy to obtain narcotics and to obtain narcotics only from that doctor.  It is a small price to pay for a reasonable quality of life despite severe pain.  But having to see a doctor once a month, every month, of every year, is expensive and somewhat draining on that quality of life.  I guess my business school professor was correct: “There is no free lunch in life.”

Additionally, once you become dependent on a pain management doctor, it makes relocation difficult because chronic pain patients are now looked upon with skepticism and new pain management doctors are not exactly eager to take in Crohn’s Disease patients unless they can establish their past experience with the pain management specialty through voluminous Patient Notes from their previous doctors.  Changing pain management doctors can also be required when the patient or his or her company changes health insurance companies which these days is a common annual occurrence due to pricing of health insurance plans.  Then trying to locate a new pain management doctor can become almost like a full-time job as the patient must often go through MANY “interviews” with different doctors to ensure there is a “match” between patient and doctor in terms of understanding needs, lifestyle and personalities.

In summary, Pain Management is a wonderful option for Crohn’s patients with chronic severe pain but it comes at a price which is not just financial and the patient is often stigmatized by pharmacies and hospitals as a drug addict or drug seeker when all they are doing is seeking treatment for a legitimate medical problem which in this case happens to be chronic pain.  This drug addict or drug seeker stigma attached to simply seeking relief from chronic severe pain caused by Crohn’s or IBD, can have professional, social and emotional effects upon the Crohn’s or IBD patient.  This doesn’t seem to happen to patients with diseases more typically associated with pain like Cancer but Crohn’s and IBD can be as painful as ANY disease.  Another burden to bear for the Crohn’s and IBD patient which is not often discussed.

Relationships and intimacy becomes much more difficult.

When do you bring it up?  How do you bring it up?  Should you bear children in case you are worried about “passing it on”?  Also, the financial burden that comes with MANY years of Severe Crohn’s Disease can also affect one’s “attractiveness” as it is completely fair to assume many people do not want to enter into a relationship and assume a tremendous amount of medical debt which will only increase over time.  Some might snicker at this point but life is not a love story and reality pokes its head in every now and then.  Applying that to my life, I know that several women I have dated have terminated our relationship because of this issue (even though in some instances other reasons were given at the time) and many more have unbelievably controlled themselves from my formidable charm and avoided beginning intimate relationships with me so they would not have to ultimately make that choice. 🙂

I JOKE about my charm and whatnot but I always had girlfriends and it wasn’t until my Crohn’s began to disable me more and more that I began to notice women taking a longer term look at our possible situation and deciding to walk away.  I NEVER got angry about it because if I were their parent I would want them to be HAPPY and whether we want to admit it or not, it is a “green world,” as my Dad often said, and without money or being in always-growing medical debt, happiness would undoubtedly be even more difficult to attain as 50% of all marriages fail as is.

A few years ago when I became disabled due to my Crohn’s, I also felt guilty about bringing a woman into a life filled with chronic sickness and ever-expanding medical debt and when evaluating the prospects of a long-term intimate relationship such as marriage, a woman has the right to know this type of information.  This is why I have dedicated my life to being a Crohn’s Disease Advocate.  I am still hopeful to meet the right woman but I realize that due to my disabling disease I might have to settle for a dog – but even owning a dog comes with financial and physical responsibilities so I’m not even sure I can do that – at least at this point in my life.  I joke but it is true.  That said, I LOVE dogs and realistically that is my goal at some point soon. 🙂

Chronic Temporary Disability from Work could make it difficult to keep a job. 

Not every Crohn’s patient gets disabled, but even after a bowel resection surgery, they may be on State Temporary Disability from their job.  This is something all workers are entitled to in their State but the chronic nature of Crohn’s could make this a fairly frequent event.  Before you know it, others at the company may start to look at YOU as the reason why the cost of their healthcare insurance keeps rising.  Despite provisions for protections against discrimination in the Affordable Care Act and in the American’s with Disabilities Act, companies have ways to “discriminate” without formally running afoul of these anti-discrimination or pre-existing illness laws.  This is just a reality which Crohn’s patients must be aware of as they navigate the otherwise challenging climb up the corporate ladder.

New helpful medications might be deemed “experimental” and not covered by insurance. 

If these new helpful medications are “reimbursed” by health insurance, the health insurance reimbursement may be very small.  More common is the situation when a few drugs are used, or will be used, in semi-successfully treating Crohn’s but for “off-label” purposes.  Such “off-label” usage (i.e., using a drug to treat conditions other than it was approved for by the FDA to treat) may also make health insurance reimbursement difficult.  This occurs, for example, when doctors realize that a certain drug approved by the FDA to lower cholesterol in the blood (such as the drug, “Colestid”) can be successfully used to “bind bile salts” in Crohn’s patients who have lost their Terminal Ileum.

This Colestid example happened to me several years ago when I lost my Terminal Ileum in a surgery and as a result was unable to digest “fats” and “bind bile salts.”  The practical result was that I was in the bathroom 30-40 times a day with relentless diarrhea until my genius New York City Crohn’s Doctor told me to “TRY” 4-5 Colestid tablets a day.  Remarkably, the diarrhea STOPPED and I was able to resume my lifestyle outside of the bathroom but not before having to appeal my health insurance company’s decision to decline reimbursing me for the cost of the Colestid because I was taking it for “off-label” purposes.  I had to appeal FIVE (5) separate times until the insurance company relented but this happens almost every time a Crohn’s patient has similar success with an “off-label”  drug.  You’d think the health insurance company would be supportive from a “Wellness” perspective but as my Dad used to say, “it’s a green world.”  This is an ongoing problem which Crohn’s and IBD patients will face as researchers and doctors continually search for better treatments with fewer side effects and ultimately, and hopefully, a cure.

Accumulated medical costs of a chronic Crohn’s Disease patient may cause financial problems which warrant bankruptcy-level solutions yet there is no state or federal bankruptcy protection “classification” for patients with chronic diseases they contracted due to them being passed down genetically through their family (as opposed to Lung Cancer they might have contracted from 30 years of smoking).

Constant extreme lethargy may be interpreted by family and friends as you being a “slacker” –

when it is simply your Crohn’s affecting you after being triggered by the environment, eating a certain food, allergies or just “because.” I feel guilty when all I can do on a given day is lie on the couch and flip through the TV channels but that’s how it is for Severe Crohn’s and IBD patients on many days – in-between bathroom trips.  When this happens frequently, some people may think you enjoy being a slacker but they have no idea of the frustration Crohn’s patients have deep down inside of not being able to regularly contribute to society.  Friends and family may start to wonder because the stark comparison between you healthy as opposed to you sick is frustrating to them.  Since you often can’t predict when these helpless days will occur, friends and family can become equally frustrated.  This then becomes a heavy burden to bear for the Crohn’s patient because we know our loved ones have the best of intentions but they begin to get frustrated by our disease as much as we do except they don’t “feel” the overwhelming tide of lethargy and therefore they apply logic to try and understand Crohn’s and that simply won’t work as science has not yet figured it out.   As Musician and Master Story-Teller Tom Petty wrote and sang in his song “Refugee:” “It’s just one of those things you gotta to feel to be true.”    

Family and Friends may not visit in the Hospital because they assume you’ve been hospitalized so much that “he can handle it” –

yet we all get lonely in the hospital and doing time in a hospital never gets easier.  As I get older I come across this more and more.  I never judge who comes or doesn’t come to visit me in the hospital other than evaluating my own needs for company and a diversion from the loneliness and pain.  That said, I am always appreciative of whoever comes to see me or call me when I am hospitalized.  But I do get upset at the thought people assume I can “handle it” because I have been hospitalized over 200 times.  Being a hospital patient is NEVER easy regardless of great nurses and compassionate physicians.  If these people only knew that being a patient in a hospital is closer to being a prisoner in a jail than to anything else then maybe they would appreciate the isolation, loneliness and fear one feels when they are lying in a hospital bed in pain with tubes coming out of every orifice.  I don’t wish it on anyone but I don’t know how else to convey to family members that just hearing the VOICE of a loved one is comforting inside a hospital even if you have a tube down your throat and can’t talk.

The side effects of the typical successful Crohn’s medications like Prednisone can be so serious –

they can affect your social and professional lives (i.e., moonfaced) and cause serious medical problems later on in life such as Hip Replacement. Additionally, immuno-suppressant drugs such as Imuran and 6-mercaptopurine (6MP) can have LETHAL long-term effects causing Cancer and Liver disease. Crohn’s patients must live with the harsh reality that in many instances the most successful treatment can cause external and internal medical problems which are as bad as or worse than Crohn’s itself.  If this doesn’t convey the almost barbaric scientific manner in which Crohn’s and IBD are treated, I don’t know what else will convey this “treatment can be worse than the disease” risk which all Crohn’s and IBD patients must assume.  This is not a criticism of the medical profession or medical professional; it is just an observation about the slow scientific process being made in treating and curing Crohn’s and IBD.

Obtaining Social Security Disability can be more difficult because the potential seriousness of Crohn’s Disease is not well-understood by the Mainstream. 

Accordingly, if you can’t work because of being disabled by Crohn’s, you sometimes have to wait 3-5 YEARS to finally prevail in Court after having to hire an attorney and giving up a large percentage to him or her for the cost of their helpful legal services.  This varies from State-to-State but I hear too many stories of people with Severe Crohn’s or IBD being denied and denied despite having voluminous medical proof almost as if the Social Security office thinks the Crohn’s patient will give up after a while.  I have also heard of stories where patients with Crohn’s are awarded Social Security Disability Benefits only to have them taken away when their case is reviewed in a few years which then re-starts the nightmarish cycle of re-application for Social Security Disability Benefits.

If you do become Disabled or Limited in your work capacity, certain family members may look at you as never having reached your potential and a strange family dynamic may be created despite them having had just as much of a genetic chance of having contracted Crohn’s as you did.   

This is the familial effect of Crohn’s and IBD because through no fault of your own and “but for the Grace of God there go I,” it could have happened to any one of your siblings – you just drew the unlucky genetic card.  This unfair familial judgment doesn’t happen within every family with a Severe Crohn’s or IBD patient.  It also can manifest itself differently with each family but it definitely happens and it is due most likely to human nature and to the Severe Crohn’s or IBD patient “looking fine” but being disabled.  This “judgment” can permeate what should be celebratory family functions such as Anniversaries, Christmas, Mother’s Day, Father’s Day, etc. but instead the Crohn’s patient comes to despise family functions because they feel they are being judged by people who could have just as easily been in their position.  This explains why many Crohn’s patients get depressed during holiday season.  Perhaps some of the intensity of the familiar effect is in the minds of Crohn’s patients but due to the genetic nature of having contracted Crohn’s there is logic behind a certain kind of weirdness taking place when getting together with siblings who could have just as easily been the family member who contracted the Severe case of Crohn’s.

Your values in life change as “Happiness” is now defined by the ability to SMILE and be PAIN-FREE as opposed to using that Tax Refund to go on a 10-day trip to Europe.

Traveling with Crohn’s Disease can be laborious and frightening.

While traveling, your worst nightmare can come true if you have a flare-up in a rural area where medical professionals don’t see many Crohn’s Disease cases.  Nevertheless, you must prepare for such an event and that makes packing for travel rather arduous. With the best of intentions these foreign medical professionals could treat you in a textbook manner (e.g., Prednisone or straight to Biologics) when what you might need is less intense medications or simple Intravenous Fluids for a few days or other medications which you take at home but which might not be so well-known in those parts of the world or they might not be so well known in terms of their application to treating Crohn’s disease. Suffice it to say, the guy who chases “River Monsters” on the “Animal Planet” Cable-TV channel, namely, Jeremy Wade, does not have Crohn’s Disease!

Hiring a Mental Health Professional is challenging. 

It is hard to find one who can relate to the unique challenges of the chronic Severe Crohn’s patient and it is difficult to afford paying them when you can’t work and earn money.  Otherwise, support to cope with all of the above is thankfully a bit easier now more than ever before due to health care social media which people use to connect with each other to “relate” to one another about symptoms and treatments.  Crohn’s patients, or “Crohnies,” as they are often referred to on-line, also join Virtual Patient Communities and participate in helpful TweetChats.  Still, there are so many Invisible and Visible “issues” for the Crohn’s or IBD patient to discuss with the Mental Health Professional, where does one start?

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