Crohn’s Disease: 3-year old talks about his Dad’s illness

“I can handle things! I’m smart! Not like everybody says… like dumb…”

It’s two (2) more years till Kindergarten, and I am already SO over Fisher-Price toys and smiling on-command every time one of my Mom’s friends talks gibberish to me just to make me like her.  Everyone does that to me; even my aunts and uncles.  I don’t get these people; just because I don’t talk, doesn’t mean I don’t understand everything they say.  Still, people visiting my house have more interesting conversations with our dog, “Lucky,” than they do with me.  Do they think I can’t keep up with the Kardashians?  Just like the character, Fredo, from “The Godfather:” “I can handle things! I’m smart! Not like everybody says… like dumb… I’m smart and I want respect!”

Weiss goes to Washington 

My Dad’s the BEST but he’s sick & often disappoints me

I know, three (3)-years old is a bit young to be quoting “Godfather Part 2” but my Dad watches that same movie, over and over again.  It’s how we bond.  When I’m not sleeping or cranky because I‘m too lazy to walk to the bathroom and I have an “accident,” we watch “GF2” together, each time with me on his lap.   It’s our special time together and while I love spending “alone time” with my Dad, I don’t know how to convey to him my fear of sounding like a gangster when I’m finally able to talk in complete sentences. Compared to the dads I see on television, my Dad is GREAT but he’s often not feeling well and that means he frequently has to cancel fun plans we have together like going to Disney, attending a Mets game, having a catch at our local park, going camping, etc.  I really don’t mind because he’s my Dad, my bestest of best friend and I love him more than any of my Marvel Lego Superheroes but it’s frustrating getting excited to do something fun with him and then unpredictably having to stay at home only to play with Lucky.  No one I know has a sick dad so I really can’t talk about it with anyone.  Even if I had friends and told them about my Dad’s health issues, they’d only remember that he often disappoints me and that’s not a fair depiction of the situation because he doesn’t intend to disappoint me.  It’s all because of some illness he has.

Most times it has something to do with his stomach and he winds up spending an inordinate amount of time in the bathroom, but whatever it is, it also affects his entire body and influences his ability to heal normally from simple bruises, any kind of inflammation and even from common conditions like the Flu.  He also gets SO TIRED, sometimes shortly after waking up after a good night’s sleep, such that we are starting to think he suffers from some sort of rare allergy.  Equally frustrating is watching Mom and Dad enjoy a night out with friends on a Friday only to have Dad tell me the next morning on Saturday that he suddenly doesn’t feel well and must cancel our plans, for example, to teach me how to fish.  He then spends the entire day in bed sleeping and only gets up to go to the bathroom.  The frustrating part is that he doesn’t look sick and it was only the night before when he felt well enough to go out with his friends.  In no way am I suggesting my Dad is lying to me; I’m just trying to explain that whatever illness he has, it’s extremely difficult for doctors to diagnose due to its unpredictable presence and multifaceted symptoms.

MAW at 3 drinking Aug 18 2014

My Mom also always brags about how great an athlete Dad was when they met back in college but in addition to the gastrointestinal problems, he gets crippling rheumatic-type joint pain.  Yet, every orthopedist he’s seen gets baffled by his condition since every diagnostic test is normal but Dad’s in too much discomfort to continue playing basketball or tennis.  Sure, he can still play those sports with me but I want to see him happier playing ball with his buddies.  He’s only 32 years old and looks completely fine and if you weren’t around him all the time, you’d never believe how much he suffers.  He’s even been hospitalized for just the joint pain several times and I’m not so sure the doctors knew what they were treating.  If he could only continue playing sports with his friends and take control over at least his physical fitness, I think he’d be so much happier but this medical problem he has doesn’t even permit that.

Professional, Social & Familial effects of this Unpredictable Illness

After being exposed to my Dad’s unusual medical problems since I was born, I was familiar with his lack of control over both the symptoms and when they occurred.  When I was very little, I remember crying every time I saw my Dad in pain and then worrying about it whenever he was fine, always expecting him to get sick.  Mom soon intervened and explained to me how she and Dad were trying very hard to figure out why this was happening to Dad and she assured me they would have an answer that would get him better shortly.  She even playfully referred to what they were doing as embarking upon a “diagnosis journey.”  That made ME feel better but I worried about how the other people in Dad’s life felt about it like his employer from whom he had to frequently take sick days even though he looked fine the previous day at work or his business colleagues who must have wondered about the veracity of his sick day claims.

Explaining the “Diagnosis Journey” to preserve Friendships

This same skepticism was always present amongst even his oldest and closest friends who often couldn’t understand what was happening to my Dad.  In order to preserve many of my Dad’s friendships, my Mom had to explain to his friends all they were doing to try and figure out what was wrong with Dad.  His closest friends finally understood but I could see with my own eyes how my parents’ social circle was slowly shrinking as many “acquaintances” found it unrealistic how my Dad could be the “life of the party” one night and bedridden the next.

Even my Dad’s own family started doubting him when he couldn’t attend various important family functions and had to cancel at the last minute.  My Grandparents, however, listened to Mom and eventually the stories she told them about Dad jogged-free some long-ago forgotten memories they had of my Dad’s youth when he had demonstrated similar behavior like abdominal pain, extreme lethargy and inexplicable joint pain.  But they explained to Mom that Dad had been a prolific athlete as a kid and he always seemed so happy so they never had reason to investigate any further.

But now my Grandparents felt terrible that they might have missed something in my Dad’s teenage years which, if brought to the attention of a doctor, might have spared Dad so much suffering.  But Mom told them if it took doctors years to figure it out now, there’s no way they would have identified it back then.  Oddly, I think that experience brought my Mom closer to my Dad’s parents because they respected all my Mom was doing to help my Dad figure out what was wrong and also because she spent a great deal of energy trying to explain it to everyone else in his life.  They were 100% behind Mom and Dad’s “diagnosis journey.”  His two (2) sisters, my aunts, however, were very skeptical and this always created tension at family functions. Mom never explained to me why Dad’s Mom and Dad were so supportive yet his sisters were not but I think it has to do with more grown-up stuff involving jealousies, ego and spousal issues.

MAW at 2 and one half Aug 18 2014

Digesting Popcorn marks the end of the “Diagnosis Journey”

Given that I’m still refining my walking skills and repeatedly fall when I get adventurous and try to change direction, I don’t have many play-dates so my best friend is my Dad.  Even though my name is “Michael,” he always calls me “buddy” or “pal.” When he does “fix-it” work around the house, I just sit and watch, but he makes me feel like WE finished building that bookcase or model airplane.  But I’m worried about him.  I don’t have much experience being around adults but it can’t be normal to have so much energy one day and then feel so tired the next that you can barely walk up a flight of stairs. In fact, when my Dad gets that tired, he always says the same thing, as if each time is the first time he suffers from such extreme lethargy and he’s marveling at its pervasive and comprehensive grasp on his ability to function normally: “My legs feel like they weigh 1,000 pounds each.”  Then there’s the bathroom trips.  Some days he’s completely normal and we have so much fun together but more often than not he’s racing to and from the bathroom. Sometimes he may go 20-40 times a DAY and afterwards he’s always drained of energy.

But just the other night, things clearly entered a new phase in terms of placing a name to my Dad’s medical problems.  Me, my Mom and Dad were hanging out in the living room watching a pay-per-view movie and eating popcorn trying to relax.  But I could “smell” that my Dad was having “accidents,” just like me.  I wanted to loan him one of my diapers, which I had thankfully grown out of, but there seemed to be more going on with him on this particular night than just his frequent trips to the bathroom.  He soon began having such severe abdominal pain that it became noticeable and my Mom told me it was time for bed and brought me to my bedroom because I kept asking her with increasing concern, “What’s wrong with Dad?” It was very scary to see my Dad in such a painful and vulnerable position.

Before my Mom got me out of the room, however, I caught a glimpse of my Dad lying on the floor in the fetal position trying to “bare down” on what seemed like intense cramps.  I had seen him do this before and once he explained what he was doing but I never saw him do this with a look in his eye like he wasn’t sure the cramps were ever going to end.  Even though my Mom led me up to my bedroom and smiled the entire way like she was taking me to a party, I could sense her fear as well.  After she made sure I was otherwise occupied with a video game, she returned to my Dad in the living room and I secretly followed behind her so I could see my Dad.  When I carefully peeked into the living room, I saw my Dad groaning in pain and even crying.  He was still lying in the fetal position and I heard my Mom tell him she had never seen him this bad and she was scared so she was calling an ambulance.

I never saw Dad cry before and that petrified me.   I guess my Mom felt the same way and in just a few minutes an official-looking van with rotating and flashing lights came to the house to pick my Dad up to take him to the nearest hospital. There was a sense of urgency to the situation as each person who came with the van apparently had a specific responsibility yet everyone calmly but deliberately completed their tasks.  But my Dad had everyone stop for a moment when he looked at me and told me not to worry, even as he held his stomach with one hand and tried to hide his tears with the other.  “I cry all the time,” I told him, “there’s no reason to be embarrassed.”  I tried hard to hide the tears starting to run down from my eyes when I spoke to him.   He started to laugh but before we could enjoy the moment, the extreme pain must have kicked in again and the people driving the van, gently, but with deliberate purpose, got between us and started to take over the situation by performing their various tasks.  It was frightening to watch and even scarier to listen to them talk on their walkie-talkies about needing to bring my Dad to the hospital “STAT.”  Then as they shut and secured the doors keeping my Dad in the van, they said something into the walkie-talkies to the effect of: “Possible perforation on the way.”

The systemic effects of Crohn’s Disease explains a lot

When those very nice people from the van with the sirens on top carried my Dad away to the hospital on some stretcher as if he were a king, I knew this hospitalization was going to be different than all others before it.  With nothing to do during the next day but hang out with Lucky, I decided to get up early and create a play station area near my Mom in the kitchen so I could hear all of her phone conversations.  Friends, family, and even neighbors, who had seen all the commotion with the van and its flashing lights, were calling to inquire about my Dad’s health.  That’s when I overheard Mom telling a friend how concerned she was ever since the doctors started telling her that Dad might have this stomach illness called, “Crohn’s Disease” and that sometime soon, he might need surgery.

Apparently a few weeks prior to this emergency hospitalization, my Mom and Dad had finally found a doctor who put the jigsaw puzzle together and tentatively diagnosed him with Crohn’s Disease.  They were careful never to discuss it in front of me because I think they were finally catching on that I understood everything they said and hearing THAT would have terrified me.  But now that the genie was out of the bottle, Mom didn’t mind discussing it in front of me so she used the phone to ease her nerves by sharing all she knew with those she loved.  Most of the phone conversations were dominated by her trying to explain to friends and family that the gastrointestinal illness “Crohn’s Disease” is actually a chronic, incurable, autoimmune disease which had systemic effects due to my Dad’s abnormal immune system. While this explained many of the seemingly unrelated and unpredictable symptoms Dad had been enduring, and it converted many of the skeptics rather quickly, I didn’t understand many of the words Mom used but judging from her unstable voice, I was now more worried than ever about my Dad.

The Stress of a long Crohn’s Disease “Diagnosis Journey”

If there was ever any doubt that my Dad’s problem emanated from his intestines and immune system, and there was, it would be erased during this hospitalization when he was admitted for a suspected perforated intestine.  Even though I didn’t understand many of the words being spoken around me, the more I learned about Crohn’s Disease, the more it sounded like the diagnosis which best explained my Dad’s unpredictable health, why he spent so much time in the bathroom and why he was often too tired to play with me when he came home from work.  It also explained the several other previous hospitalizations I had heard about which occurred when I was still in my Mom’s belly.   I also began to understand how the stress of being so sick coupled with being doubted by very smart doctors had created tension between him and my Mom.  I can’t imagine my Mom ever doubting my Dad but, she’s only human, so, when the top doctors in New York City repeatedly told my Mom and Dad that all he kept complaining about couldn’t possibly be true, that had to complicate their relationship.

The diagnosis of Crohn’s Disease was a “Relief” and “Vindication”

My Mom was also strangely “relieved” that all doubts had now been lifted from the tentative Crohn’s diagnosis as she said something like “at least we finally have the correct diagnosis” because despite several previous hospitalizations and my Dad unequivocally complaining of various symptoms, the doctors were previously unable to correctly diagnose my Dad.  Incidentally, I also overheard that this “diagnosis journey” pre-dated me which meant my Dad had been suffering from these undiagnosed horrific symptoms for at least three (3) years.  My Dad’s lucky he has a partner like my Mom who stood by him when many others must have thought he was a hypochondriac or just plan crazy.

Generally, most doctors they had seen previous to my Dad’s current “Gastroenterologist” thought he either had Irritable Bowel Syndrome, Fibromyalgia, Lupus, Advanced Lyme Disease or Chronic Fatigue Syndrome but, as I heard my Mom tell it, none of them truly believed everything my Dad was telling them.  The other doctors thought there was nothing wrong with him other than a “nervous stomach” which he could control better if he had a less stressful job since meeting his sales quotas every month was an ongoing tense conversation topic almost every night at dinner.

I also heard my Mom tell one of her friends how frustrated she got when some doctor with “the personality of a handball” (those were my Mom’s words, not mine) told them there’s nothing wrong with my Dad and he is causing all of his own problems due to the combination of his diet and the manner in which he is handling the stress from his job.  This “handball” doctor didn’t believe my Dad’s symptoms were real as he thought they were too varied to be connected to one particular diagnosis.  Another doctor, she said, who cost a “small fortune” to consult with, thought my Dad’s medical problems would be resolved by Psychological Counseling.  Basically, that doctor was telling my Mom that my Dad was crazy.  After hearing these heart-breaking “diagnosis journey” stories, I started to understand why my Mom was relieved that Dad was finally being treated by a doctor who believed him as he viewed Dad’s multi-faceted symptoms as a “textbook case of Crohn’s Disease.”

Putting Crohn’s Disease patients on the Defensive

I remember the doctor who delivered me and other than the gentle slap on my chest she gave me to get my lungs started, I was so impressed by the manner in which she comforted my Mom during what I’ve been told was a difficult delivery.  I felt like some “special empathetic person” had helped my Mom bring me into this world and as a result I would be such a special compassionate person.  After that experience and watching my Dad suffer for a few years, I thought doctors were supposed to try and give patients answers to their medical problems but according to my Mom, some of my Dad’s doctors were putting him on the defensive as if he had caused the problem.  At some point, thought, I remember my folks agreeing to be “resilient” about the situation by agreeing to trust Dad’s body.  I never knew what that meant until I heard my Mom refer to their “diagnosis journey.”

The Slow & often Sad Diagnostic Process of Crohn’s Disease

As for Dad’s symptoms, I had either witnessed them or heard my Mom and Dad talk about them.  With all the current technological diagnostic equipment, it’s a shame no one was able to group together Dad’s symptoms sooner so they could be viewed as parts of a larger and collectively more serious medical problem, like Crohn’s Disease. But apparently there is no definitive test to determine Crohn’s as it is part diagnostic, part physician experience, with the remainder left to be determined by the art or science of medicine which enables doctors to make intuitive, educated guesses, when necessary.  Then, after observing the patient continue to suffer these brutal collection of symptoms, the diagnosis is confirmed.

Patient input is critical to the diagnosis of Crohn’s Disease

You’d figure such diagnostic suffering would not be necessary in this day and age but with Crohn’s Disease the patient’s input is critical to the diagnosis.  Yet, my Mom and Dad had been so specific about his symptoms and suffering, and in retrospect 100% accurate, according to globally-accepted information inside pamphlets describing the symptoms of Crohn’s Disease published by the Crohn’s & Colitis Foundation (CCFA) which are given to newly diagnosed patients, yet most doctors either didn’t believe him or they were wrong about his diagnosis. Now I understand why some doctors thought my Dad needed to see a Shrink because going through that diagnostic process would make anyone go insane.

The Main Symptoms/Effects of Crohn’s Disease

Based on observing my Dad over the past 2 years or so, as my memory about year one (1) of my life is still a bit foggy, my Mom’s recounting of it all on the phone to friends and family and the contents of that CCFA pamphlet, which my Dad read out loud to me when we visited him in the hospital to ease his fears I thought his suffering over the past few years made him out to be some type of Martian or wack-job, the general symptoms of Crohn’s Disease include: persistent and/or uncontrollable diarrhea; rectal bleeding; unpredictable/urgent need to move bowels; severe abdominal cramps and associated severe pain; and constipation which sometimes got so bad that my Dad’s belly became grossly “distended” and he looked like Santa Claus.  I always thought that was so funny until I realized how painful it was for Dad.

Another symptom, which seemed to be why Dad was taken to the hospital, is inflammation of the intestines so severe that it causes the gastrointestinal (GI) passageway for food, air and water to become so narrow, Dad would painfully feel anything trying to pass through it.  If there was a blockage of some sort brought about by the inflammation, that narrow passageway became like a kink in a garden hose and nothing got through.  Always compounding this problem is the human body’s process of “peristalsis” which helps keep things moving down the GI tract.  But when peristalsis comes upon a blockage, the pain of constantly trying to pass through that blockage or “obstruction” could be unbearable.  In some rare instances, the pressure would build up from repeated attempts at trying to get through the obstruction that it would cause the Crohn’s patient to “perforate” his intestines.  This means a hole is formed in the intestine and then the contents of the intestine start to leak into other parts of the body potentially causing life-threatening infections.  This is why my Dad’s current situation was considered an emergency as the people who transported him to the hospital thought he may have perforated his small bowel.

Some Inflammatory and Systemic effects of Crohn’s Disease

In addition to the GI symptoms, Dad experienced such severe rheumatic-type joint pain that he’d see an orthopedist but he or she never could help him because all along his problem was caused by his Crohn’s Disease which came with the symptom of the sudden onset of often temporarily disabling joint pain. This aspect of Crohn’s Disease was also unpredictable in that one day me and my Dad would clean out the garage together but the next day he’d have to back out of a promise he made to Mom that he’d set up the outdoor furniture on the patio deck because he was in too much pain to do so.  I know how much he hated breaking promises to Mom but his Crohn’s Disease made it impossible to even create reliable “To-Do Lists” for fear Dad would have to rest on a day he planned and promised to do anything physical or to be anywhere but at home close to his bed and bathroom.

With Crohn’s being an autoimmune disease, my Dad’s body is unable to normally “fight” inflammation and all the typically prescribed Over-The-Counter anti-inflammatory medications always made his stomach very sick.  In such instances, my Dad was forced to only treat the pain caused by the inflammation or he looked to alternative medicine methods such as Acupuncture for answers.  While this inflammation problem seemed localized to his knees and hands, Dad also complained of a debilitating condition in his lower back which was subsequently diagnosed as “Sacroiliitis,” which is a very painful inflammation located at the sacroiliac joints and is common amongst Crohn’s patients. The sacroiliac (SI) joints are in the lower portion of the spine, below the lumbar spine, and there is no effective treatment for this condition which my Dad can tolerate other than injections of steroids aimed at reducing the inflammation of the SI joints and taking pain medications to ease the pain.  When this happened, Dad walked around the house as stiff as a board and the amount of time it took to quiet down the inflammation was as arbitrary as the amount of time it took to appear as a problem.

Most recently, though, my Dad found Acupuncture very successful in at least shortening the duration of each Sacroiliitis episode.  Dad also often had problems with his eyes as the systemic inflammatory effects of Crohn’s Disease caused otherwise inexplicable painful swelling in and around his cornea.  These same systemic effects also caused my Dad to have Cataract surgery in BOTH eyes at a very young age.  Usually Dad had concurrent GI symptoms when his Sacroiliitis acted up or his eyes bothered him but many times these Crohn’s-caused problems would be standalone issues.  I imagine describing all of this to a new doctor made it difficult to diagnose Dad with Crohn’s Disease and this “difficult to diagnose” problem became almost like another symptom of the disease.  Suffice it to say, after that day I overheard my Mom explaining the multi-faceted effects of Crohn’s Disease, I never forgot how severe or pervasive it could be and I also learned how to spell a word not many other adults could spell!!!

Crohn’s is an “Autoimmune Disease” – What does that mean?

Now that everyone heard about the ambulance, my grandparents called to see how my Dad was doing but Mom put up a brave face not wanting to overly concern them with the harsh realities of Crohn’s Disease.  She said all the right things, so as far as they knew, my Mom and Dad were still on their diagnosis journey.  My Mom figured she’d tell Dad’s folks after he was formally diagnosed and feeling better.  But she told her friends EVERYTHING and I couldn’t help but crawl over and listen more intently as the list of medical maladies associated with Crohn’s Disease seemed to never end.  But it was difficult to hear through Lucky’s seemingly non-stop whining about being bored eating the same food night-after-night (that’s right, kids my age can converse with their own dogs).  In that regard, I heard my Mom say things like Crohn’s is really an incurable “autoimmune” disease whereby my Dad’s immune system over-reacts to being stimulated such that it starts to attack itself. When I heard that I got scared because there’s nothing my Dad can do about that.  I wondered if I could somehow help him with that.

Some of my Mom’s more superficial friends, who usually did all the talking and were unaccustomed to listening, blamed it on all the job stress my Dad deals with as a salesman who must meet his sales quota every month.  That got my Mom upset because the doctors told her that stress has nothing to do with Crohn’s flare-ups or with their severity.  But my Mom knew her friends meant well; they just didn’t know what else to say when they listened to my Mom tell them, for example, how the most effective of the Crohn’s medications often cause side effects so severe they rival Crohn’s in terms of their pervasive and severe effects.  Some also can cause the scariest of short and long-term medical problems such as pancreatitis, different life-threatening cancers, liver problems, potentially lethal lung and respiratory problems, other auto-immune diseases, etc.

Crohn’s Disease & Steroids – Great Medicine with BAD side effects

One of these Crohn’s treatment drugs is a steroid, which in the pill form is known as the steroid “Prednisone” but in the hospital, when given intravenously for a more immediate effect, it goes by different names.  It is used routinely by the doctors to reduce intestinal inflammation as a way to stave off surgery.  However, its ability to quickly reduce inflammation comes at the long-term cost of likely weakening my Dad’s bones as he aged.  As a result, the doctors use steroids for brief periods of time to attack the worst part of a Crohn’s flare-up in much the same way, and in similar quantities, a normal person’s body would naturally produce it to counteract any deleterious inflammation.   Steroids are also used, in one form or another, to combat all the other systemic inflammatory problems my Dad has such as steroid injections for his Sacroiliitis and steroid eye drops for his aforementioned eye problems.

Crohn’s is an Inflammatory Bowel Disease (IBD)

I thought steroids were drugs athletes took to enhance their athletic performance but with Crohn’s Disease they are very important tools used by doctors to “manage” the disease since it cannot be cured.  After all, Crohn’s Disease is classified as an Inflammatory Bowel Disease (IBD).  Unfortunately, the amount of steroids used in severe Crohn’s cases like my Dad’s can result in the need for eventual Hip Replacement or Spine-Fusion Surgeries at relatively young ages such as in the early 40s but that is commonplace for patients with Severe Crohn’s Disease.

Surgery is a treatment of last resort for Crohn’s Disease patients

I also heard the frustration in my Mom’s voice as she tried to explain why surgery is a last resort for Crohn’s Disease patients because we all have approximately twenty-two (22) feet of small bowel and the surgeons can’t keep taking out the diseased portions of the intestines for fear that a patient like my Dad will then have to get an Ostomy of some sort if he runs out of small bowel.  I didn’t understand this so I asked Lucky because he has an encyclopedia-like brain and tends to know about medical stuff since for the first few years of his life he lived inside a big Veterinary Clinic until my Dad “rescued” him.  This is what Lucky basically told me: An ostomy refers to the surgically created opening in the body for the discharge of body wastes and there are many different types depending upon which part of the gastrointestinal tract must be removed such as the small bowel, colon or large intestine.  So an ostomy sounded like a viable medical treatment but it radically changes the person’ lifestyle.  I hoped my Dad didn’t need one but I know he could deal with it, if he had to.

Being hospitalized for “Crohn’s Disease”

Sensing my eagerness to see Dad, my Mom finally took me to see him in the hospital.  She tried to act all cheery when we got there, and so many pretty nurses pinched my cheeks that for a few seconds I forgot why we were there, but I knew Mom brought me to try and deflect the feeling of hopelessness she and my Dad had regarding his current prognosis and his unpredictable future with Crohn’s Disease. When we got to my Dad’s hospital room he looked different as he had an “NG Tube” inserted through his nose down into his stomach.  He was in too much pain to speak, or when he tried, he slurred his words and sounded a little like Lucky.  I tried not to laugh.   His doctor was there to greet us and after exchanging pleasantries he explained my Dad’s situation.  I understand most things adults say but that seemed boring so I tried to take a nap until he gave us the example of a “kink in a garden hose.”

In short, he told us that just like the water trying to pass through the blockage in the garden hose caused by the kink, my Dad’s intestine was having trouble trying to digest the popcorn, which is a major no-no for Crohn’s patients.  Each time his body naturally tried to move the popcorn down his intestines, his intestinal obstruction would not let that happen and the result was severe pain for my Dad.  In the past hospitalizations, there was always something getting through so even though he had great pain during those hospitalizations, he only had “Partial Obstructions;” this time he had a Full Obstruction because nothing was getting through. They even feared he had perforated his intestine which would have meant emergency surgery, but he had not.

So the plan was to first siphon out whatever was in his stomach to alleviate the pressure which kept causing Dad pain when it came up against the obstruction.  This included “air,” which, when caught inside the body, is typically expelled as gas but if it got stuck, it was just as painful as food.  That’s what the NG Tube (Nasogastric Tube) was for and I can’t even imagine how they inserted it through my Dad’s nose down into his stomach while he was awake!!  I guess when you are in so much pain it doesn’t much matter what they do so long as it relives the pain, which my Dad said the NG tube did almost immediately.  The doctors then started giving my Dad intravenous steroids around the clock hoping such an intense course of drug therapy would reduce the abnormal inflammation in his intestines and then help my Dad “open up” by calming down the “angry” inflammation which was making even the digestion of water painful.

At the very least, this emergency episode with the popcorn placed my Dad inside a hospital during the absolute worst part of a flare-up and because of that the doctor was able to perform various diagnostic studies to confirm a diagnosis of Crohn’s Disease.  This was the good news for the day.

The 1st Surgery for Crohn’s Disease

But after ten (10) days or so, nothing changed and through those various diagnostic tests they were able to identify a specific area of his small bowel which was causing the obstruction.  This same area had been the culprit in previous hospitalizations so Dad wound up having surgery to remove this part of his small bowel.  Everything went fine during the surgery but the post-operative process was difficult as my Dad woke up from the surgery with an NG Tube in his nose and a Foley Catheter attached to his penis so he’d be able to rest in bed instead of getting up to go to the bathroom.  At the same time, they wanted him to get up and walk with all these contraptions attached to him.  Then he also had to deal with the surgical pain of having his abdomen cut open.  It was very difficult.

After the 3nd day post-op, the doctors encouraged him to start sucking on ice-chips to see how his body tolerated it.  Then they had him try clear liquids and then full liquids.  Once his body tolerated those, the doctors waited for his intestines to “wake up.”  The way they measured this was by him “passing wind.” Once that happened, they finally started feeding him very soft foods.  This went on for a few days until they were able to slowly advance his diet.  If there were no negative consequences to him eating, he was eligible to be discharged after he had a bowel movement.  Thankfully, that happened approximately six (6) days after the surgery. It was funny, for what seemed like so long my Dad couldn’t stop going to the bathroom and he had surgery to fix that problem, but now I was rooting for him to go to the bathroom again so he could come home.

Managing Crohn’s Disease Post-Operatively

It had been a few weeks since my Dad was back at home from the hospital after his surgery.  He had some pain from the surgery and Mom told me and Lucky to be careful how we played with him but other than that, it was great to have him home and healthy.  He was no longer running to the bathroom 20-40 times a day and it appeared the surgery fixed all his problems.  But just as I was getting comfortable with my “new and improved” Dad, he started getting tired without notice and certain foods started causing the same old GI symptoms.  While my Dad had a few follow-up visits with the surgeon, he had not seen or spoken to his Gastroenterologist since he last saw him in the hospital. So he called him to tell him about some “issues” he had and shortly thereafter my Mom scheduled an appointment with him.

I had never before seen my parents sit together in a doctor’s office discussing Dad’s Crohn’s as most of what we now knew were his Crohn’s Disease episodes were emergencies and/or they involved a hospital at one point or another. So I didn’t understand how the doctor could help my Dad from behind a desk.  They took me along because the babysitter fell through at the last minute so Mom warned me to be on my best behavior so I just listened while sitting on my Dad’s lap, holding has hand.  Over the next twenty (20) minutes the doctor laid out my Dad’s options because he felt his Crohn’s was too aggressive and severe not to be treated with some type of “preventative” medication.  While the surgery was a success, he said, it was quite possible Dad’s Crohn’s Disease could come back at any time and affect a different part of his intestine.  Moreover, he added, my Dad would always have an autoimmune illness so he’d still have to manage his health very carefully.  My Dad asked many questions most of which the doctor had no specific answer to besides, “It depends.”

When my Mom chimed in asking for a more detailed explanation, the doctor, carefully alternating his attention between my Mom and Dad, very kindly and compassionately said, “Crohn’s Disease is a complex incurable autoimmune disease which has a broad spectrum of severity and it affects people differently. Over time, we will know the answers to many of your respective questions through trial and error.”

Then, to provide my parents with some perspective, he said that many Crohn’s patients get a Crohn’s complication called a “fistula” which is an abnormal connection between different body parts. He said fistulas can develop between your intestine and skin, or between your intestine and another organ causing continuous drainage of bowel contents to your skin or another organ.  In some cases, a fistula may become infected and form an abscess, which can be life-threatening if not treated. Then he said, “Be thankful you don’t have a fistula because life can be miserable with one. You have an aggressive form of obstructional Crohn’s Disease so let’s just treat that and take each day as it comes.  You may not need to see me for 6 months or you many need to see me sooner.  Only time will tell.”

Managing Crohn’s Disease with Medicine

My Mom’s jaw was still dropped in shock after hearing about the possibility of developing a fistula but my Dad grabbed her hand and comforted her.  The doctor had made his point so the rest of the conversation focused on devising a medication strategy which would treat the underlying Crohn’s instead of the dangerous manifestations of it such as an obstruction or an anal fistula.  So they first started talking about my Dad taking one of various available immuno-suppressive drugs which are basically used to slow down the immune system from being over-active and attacking itself.   First discussed was immune-suppressant drugs like 6-MP and Imuran but the doctor said it took those drugs 3-6 months to build up in one’s system to have an effect and he therefore was concerned Dad might obstruct during that rather long waiting period given his aggressive disease.  For that reason, they collectively ruled out that combination of drugs for Dad.

These drugs, like all the immune-suppressant drugs being discussed, also came with a laundry list of possible lethal side effects because slowing down one’s immune system left that person with a severely compromised immune system but that is the way Crohn’s has been effectively managed over the years.  It seemed counter-intuitive to weaken an already abnormal immune system but my Mom and Dad had performed a ton of research before this meeting so they were prepared for the discussion.  I also remember them discussing another similar drug, Methotrexate, and it worked faster but the potential side effects for my Dad were even worse given some family medical history.

Then the doctor said they had developed new “Biologics” which were drugs often successful at putting Crohn’s Disease into Remission.   He seemed to be pointing my Mom and Dad in that direction beginning with the drug Remicade.  It involved having to get it infused every 6 weeks or so but many Crohn’s patients had been doing very well on it.  If that didn’t work, there were other Biologics.  These drugs also came with a long list of side effects but full Remission seemed like paradise and after hearing about the fistulas, my Mom and Dad quickly agreed to start Remicade treatments as soon as possible.

I’ll never forget what the doctor said as he shook their hands to say goodbye.  He looked them each in the eye and said:

“Let’s not kid ourselves, Crohn’s Disease is a very serious disease.  You’d never know it from the advertisements you see on television but it can be vicious with devastating physical, psychological, emotional, professional, financial, social and familial effects.  But great progress is being made in research and we are CLOSE.  So, ‘the longer you live, the longer you live.’ By this I mean, do what you must to get to tomorrow and if you do, there is a chance there will be newer, better drugs which may even cure Crohn’s Disease.  Good luck.”

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Stanford Medicine X, Quantified Self & Connected Health at Doctors 2.0

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Here’s a few more Video Interviews I was able to conduct at the recent “Doctors 2.0 & You” in Paris, France.  They run the gamut from chatting with the Executive Director of the “sister conference” of Doctors 2.0, namely Stanford Medicine X (Dr. Larry Chu) to gaining a hands-on understanding of Connected Health and Quantified Self (Christian Funk), the two (2) “hottest” fields in “disruptive healthcare.”  In that context, “disruptive” is a POSITIVE TERM in that it represents efforts aimed at changing and improving the healthcare “patient experience,” which obviously has much to improve upon.  I’ve also included interviews with two  (2) extraordinary people who are singlehandedly making major impacts on methods of effective Patient Advocacy (Seth D. Ginsberg) and Lifestyle/Preventative Medicine  (Dr. Liana Lianov).

I’ve also included a fascinating Interview with Crohn’s Disease patient and frequent Keynote Speaker, Michael Seres.  Michael stands out because in 2011 he was only the eleventh (11th) person IN THE WORLD to undergo a small bowel transplant and the 6th to succeed.  His contemporaneous blogging of the transplant experience (his blog is “Being a Patient Isn’t Easy!,”) was so accurate and inspirational that it is now considered a Patient Manual and Required Reading by the global Intestinal Transplant Association.   Finally, this Blog entry would not be complete without an interview with Thomas Lee of Symplur about “The Healthcare Hashtag Project” which is so instrumental in helping shape the health care social media discussion. Somehow, Thomas and Symplur make Twitter healthcare “analytics” fun and more importantly, these analytics help hardworking, dedicated healthcare entrepreneurs, disease experts and advocates most efficiently target their message to its intended audience.

 

This is an Interview with Dr. Larry Chu about digital health and this year’s Stanford “Medicine X,” taking place September 5, 2014 through September 7, 2014.  Dr. Chu is the Executive Director of Stanford “Medicine X,” a leading healthcare conference which explores how emerging technologies advance the practice of medicine, improve health and empower patients to be active participants in their own care. It is the formal “sister” conference to Doctors 2.0 & You.  Dr. Chu is a practicing physician who runs the Anesthesia Informatics and Media (AIM) lab at Stanford University. He is an Associate Professor of Anesthesia on the faculty of the Stanford University School of Medicine.

This is Interview is with Christian Funk, project manager for the Germany-based company, Medisana, about Connected Health & Quantified Self.  Christian Funk has been a prolific creator in the area of mobile health but four (4) years ago he started helping to develop and market Medisana’s award-winning “VitaDock” series of Connected Health and Quantified Self devices and applications.  As a result, he is considered an Expert in these fast emerging Global Healthcare fields.

This Interview is with Seth D. Ginsberg, President, Global Healthy Living Foundation, Inc., about Online Patient Communities and Organized Patient Advocacy. Seth Ginsberg is often referred to as “America’s Patient Advocate” and a special adviser to tech start-up companies that are engineering solutions for today’s healthcare- and education-related problems. He is not only the president and co-founder of CreakyJoints, the arthritis advocacy organization and world’s most popular arthritis community, he is also a member.

This Interview is with Dr. Liana Lianov and delves into Lifestyle & Preventative Medicine. Dr. Liana Lianov is a Senior Medical Consultant at the California Department of Health Care Services and the Immediate Past President of the American College of Lifestyle Medicine. She is Board Certified in Preventive Medicine and Internal Medicine, completed a Psychiatry fellowship, and is a national leader in the Lifestyle Medicine movement. Lifestyle Medicine promotes healthy living not only to prevent, but also to treat, chronic diseases. You can learn more about Dr. Lianov’s efforts at Healthtype.com.

This Interview with ePatient Michael Seres is about Life as an engaged ePatient with a Small Bowel Transplant. Our recorded conversation at 2014 “Doctors 2.0 & You” included his account of his unique patient blog journey, his thoughts on what constitutes a successful blog, how he continues to advocate despite formidable day-to-day medical struggles inherent in any transplant or chronic disease situation [i.e., Crohn's Disease] and he also offered his fascinating insights regarding the subtle differences between this Medical Conference and its “sister” Conference, Stanford Medicine X, held each year at Stanford University in Palo Alto, California.

This Interview about Healthcare Social Media Analytics & the Utilization of Twitter Healthcare Data is with Thomas Lee, Co-founder of both Symplur, L.L.C. and “The Healthcare Hashtag Project.”

By way of brief background, Mr. Lee is also Managing Partner of The Fox Group, LLC, an internationally-based healthcare consulting firm.  Mr. Lee’s nearly four decades of experience in the business of healthcare includes special emphasis on business start-ups, new program development and leveraging web. His current passion is the role social media plays in the evolving healthcare landscape, and in the emerging field of healthcare social media analytics.  Thomas also teaches university level courses and has been a frequent guest lecturer to doctoral level students on the subject of healthcare start-up businesses and entrepreneurship.

Crohn’s Disease & IBD – Interview w/ an Expert

USE Chapman Blog Pic July 9 2014

Chronic patients must adapt to different doctors

As a 30-year Crohn’s Disease patient, I’ve met every conceivable type of physician and encountered them on probably their (and my) best and worst days.  With such a complex and seemingly “personalized” disease, I’ve learned there’s rarely a doctor-patient “comfort zone” such that they “take you at your word” when you articulate your symptoms, as rare or strange as they may be, or when you convey your surgical scarred-substantiated veteran thoughts.  But that’s the gig with a chronic, incurable, autoimmune disease like Crohn’s so you must learn to adapt to the different personalities you meet along the way in order to quickly and effectively communicate to obtain the best possible medical care.  When you are diagnosed at the relative young age of 21, the process of adapting also most assuredly includes difficult school, work, family or life relocation decisions which translates into even more “new” doctors with whom to meet and get along with.  This was all true for me but unbeknownst to me at the time, I was lucky; my first Crohn’s doctor turned out to be “THE” Crohn’s Disease doctor.

Sometimes the “first” doctor is the “best” – who knew?

Ironically, it was my first gastroenterologist, Dr. Mark L. Chapman, who instilled in me the necessary courage and confidence to leave his “care jurisdiction” by making those life relocation decisions strictly “on the merits” and not in any way, shape or form influenced by the fear of having to find another Crohn’s Disease doctor with whom I could communicate so intimately; all because we had developed such a uniquely mutual trusting rapport.  By necessity, I tried to re-create this relationship in different parts of the United States, at different times of my life, and its been 30 years, but I’ve never found another Crohn’s or IBD doctor like Dr. Chapman who is so adept at being able to identify and treat so many of the Crohn’s “curve-balls” which initially make me bend at the knees but then wind up painting the corner of the plate as painful, frustrating or disabling strikes which disrupt my life and make me take notice of their potentially pervasive effect on my life or lifestyle.

*“From Tuscon to Tucumcari, Tehachapi to Tonapah” – “Willin’” 

Even though my life’s journey has thus far included prolonged residence in, and visits to, wonderful cities like Boston,  Los Angeles, Portland, Oregon and Paris where I encountered compassionate and expert doctors, and in my travels I’ve had bizarre Crohn’s Disease obstruction complications from the high altitude of South Lake Tahoe, California, the almost perforating pressure inside a small airplane ride from Dothan, Alabama to Atlanta and in Portland I woke up with a Delayed Anaphylactic Reaction to my last infusion of Remicade in New Jersey, I always wound up seeking Dr. Chapman’s advice because no one else could scientifically explain what had happened to me.  I also frequently encountered rare complications from my Crohn’s Disease and unprecedented side effects from the Biologic Drugs and each time they too ultimately led me back to Dr. Chapman because he was the only GI doctor with a global track record of effectively identifying such problems and devising successful treatments.   Mind you, I would extensively research these Crohn’s Disease issues trying to seek a second such opinion but the road always led back to Dr. Chapman. **“Send lawyers, guns and money.  The shit has hit the fan.”  He’s THAT doctor.

Treating severe Crohn’s Disease is a number’s game

My 100% belief in Dr. Chapman is based on logic because obtaining an accurate diagnosis and successful treatment for a challenging and incurable disease like Crohn’s whose “medical textbook” treatments for the most severe of flare-ups often causes even worse side effects is akin to a “number’s game” and the New York City Gastroenterology (GI) Practice in which Dr. Chapman is a Founding Partner has likely treated more Inflammatory Bowel Disease (IBD) patients over the past 30-50 years than any other private GI medical practice in the world.   Moreover, Dr. Chapman’s GI medical practice is the type people turn to from all over the world when the complexities of their case befuddles their local then regional then national IBD experts.

Even when TV asked, I recommended Dr. Mark L. Chapman

I always thought Dr. Chapman resembled the great character actor Brian Dennehy and for some strange reason which has nothing to do with science, that brought me great comfort whenever I was hospitalized and saw him approach my room during morning Rounds.  We would joke about it but then in 2001 when my book, “Confessions of a Professional Hospital Patient,” landed me on NBC’s “Today Show,” MSNBC contacted me about producing a “patient segment” and they wanted to interview my Crohn’s Disease doctor.

Book July 9 2014

They said I could choose any doctor in the United States.  While it does suck to have Crohn’s Disease, it was an incredibly cool feeling the morning Dr. Chapman had to shut down his very busy New York City GI Practice so he could talk about treating ME for Crohn’s Disease to an MSNBC Reporter under the  lights with the pre-Interview makeup ritual which he seemed just a tad too at ease with.

That’s the superficial background on Dr. Mark L. Chapman’s credibility as a Crohn’s Disease and IBD expert. So when a few well-intentioned but rather intense people on a Crohn’s Disease Facebook Group once challenged me on some Postings I made about a Documentary my Charity is producing about Crohn’s and IBD, I thought the best and most efficient way to answer their “comments” was to go directly to the “Source.” That Source is Dr. Mark L. Chapman and he was kind enough to indulge me in my attempt to share his Crohn’s/IBD wisdom in healthcare social media.  To that end, below is Part One (1) and Part Two (2) of my September 10, 2013 Interview with New York City-based Gastroenterologist, Dr. Mark L. Chapman, arguably one of the world’s foremost authorities on Inflammatory Bowel Disease (“IBD) based on his 50+ years of practicing Gastroenterology in one of the world’s busiest and most well-respected GI medical practices.

Note:  This is NOT Medical Advice

Part 1 – In this portion of the Interview, Dr. Chapman provides succinct explanations for the differences between diagnoses of Crohn’s Disease, Colitis, Ulcerative Colitis and even “Crohn’s Colitis.”  Dr. Chapman also explains the serious symptoms associated with having “Severe Crohn’s Disease.”

Part 2 – In this portion of the Interview, Dr. Chapman opines on the role played by the somewhat controversial medical specialty of “Pain Management” insofar as treating Crohn’s Disease and Ulcerative Colitis.  Dr. Chapman also explains what many patients believe is a strange phenomenon regarding their disease flare-ups occurring at the same time of the year; year after year; inferring some type of environmental factors might be involved with triggering Crohn’s Disease flareups.

 

*“Willin’” – lyrics by Lowell George

**“Lawyers, Guns And Money” – lyrics by Warren Zevon

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Google Glass & Surgery, Medicine & Healthcare Innovation

I’ve heard many smart technologically-obsessed healthcare professionals speak at Conference after Conference about how Google Glass will revolutionize the practice of medicine for both patients and doctors but it’s hard to take them seriously when they look like Jacques Cousteau wearing some custom-made contraption just before submerging to explore the depths of some faraway ocean which I will never visit. However, my mind was recently changed at “Doctors 2.0 & You” in Paris, France, when Google Glass Surgeon and “Explorer,” Dr. Rafael Grossmann, was kind enough to share a few minutes with me and explain what every medical expert seems to be sure of, i.e., Google Glass could be a powerful tool for “disruptive innovation in healthcare.”

By the way, the term “Google Glass Explorer” is actually a “term of art” in that these people sign up with Google to purchase Google Glass and then share their stories from using it. I applaud Google for being such a “thick-skinned” corporation focused strictly on making the best product possible and I am eternally grateful to the Medical Google Glass Explorers who are bringing to fruition all that Dr. Grossmann alludes to in this 8-9 minute Interview. Enjoy.

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Crohn’s Disease Patient Reporter back from “Doctors 2.0 & You” in Paris, France

Healthcare “Serious Games” & “Simulation” at Doctors 2.0 & You 2014

Anderson Cooper, look out!

It’s no secret that I try to “cope” with the comprehensive and systemic life-changing effects of 30-years with Crohn’s Disease by advocating for raising global awareness about this auto-immune, chronic, “broad spectrum severity” and often misunderstood disease.  I even started a 501 (c) 3 Charitable Foundation called the “Crohn’s Disease Warrior Patrol” [CDWP] to organize and implement a Patient Care Strategy to help newly diagnosed patients based on the simple adage: Patients helping other Patients is often the Best Medicine.”  In that regard, things are going well with some major announcements soon to come including the CDWP finally commencing a patient-driven Documentary aimed at raising global awareness about the potential severity and pervasive effects of Crohn’s and Inflammatory Bowel Disease [IBD].  But as I do whatever I can, whenever I am physically able to do so, I often interact with ingenious, tireless, dedicated people using innovative and entrepreneurial applications of Digital Healthcare to fight their fight against a disease, a broken healthcare system or to improve the delivery of healthcare and make it accessible to more people.  Accordingly, I can’t help but use this Blog to “report” on these people and experiences so that others not so exposed to such extraordinary circumstances can learn about them and be similarly energized and motivated.  With this mindset, I recently traveled to the 4th edition of “Doctors 2.0 & You” held in Paris, France.  I was also invited to Doctors 2.0 & You to speak about Crohn’s Disease and the CDWP as they relate to the Quality of Patient Data available in Healthcare Social Media.

Healthcare “Serious Games” Designer Evert Hoogendoorn at Doctors 2.0 & You 2014

Doctors 2.0 & You 2014 | Interview with Tal Givoly, CEO, Medivizor

Trials & Tribulations of a traveling Healthcare Reporter with Crohn’s Disease

I’ve been to many of these seemingly “cutting-edge” Healthcare Conferences but sometimes they don’t focus enough on the “Patient Perspective” when they tackle the fast-changing landscape of digital healthcare.  That oversight seems patently counter-intuitive and thus negatively skews the quality of my experience and thus it’s always of concern to me prior to attending.  My biggest concern, however, is always my health, especially with respect to Doctors 2.0, because just the mere travel to Paris, France made me very nervous as it was only a few months after my Hip Replacement Surgery and not too distant from the intense chemotherapy I underwent to treat a still-undiagnosed severe breathing/lung problem likely caused by Biologic medications I took to keep my Crohn’s at bay.  Additionally, during my last cross-country excursion to the wonderful “Medicine X” at Stanford University in California, the air pressure inside the airplane caused my bowel to obstruct mid-flight such that the first few days of “Medx” (and the remaining portion of the flight!) were very painful for me.  Then, immediately after Medx when my Crohn’s had quieted down, I tried to take advantage of being out West and visited some friends in Lake Tahoe, CA.  But within a few hours at such a high altitude (i.e., 6,500 feet above sea level), my “insides” blew up and I looked like “The Michelin Man” and knew I had again obstructed and was forced to drive to lower ground to avoid a certain hospitalization. 

Doctors 2.0 & You 2014 | Interview with Stanley Lee of DXY.com in China

Since I was scheduled to fly back to New Jersey from Reno, Nevada, I drove there to a nice, secluded well-respected chain hotel near the airport but quickly learned the hard way that Reno, Nevada is 4,500 feet ABOVE sea level and as far as my bowels were concerned that meant I was still at the top of Mt. Kilimanjaro.  So, at 5 AM, back into the rental car I went, headed toward lower ground while struggling with intense abdominal pain, all the while praying my bowel wouldn’t perforate.  Somehow I safely made it to Sacramento, CA, which is only 13 feet above sea level (I was SO thankful for technology and my ability to quickly research the closest city to Reno, NV which is at or near seal level), and I soon began to feel some relief.  My trusted, longtime New York Gastroenterologist, Dr. Mark Chapman, then over the phone instructed me to stay there for AT LEAST five (5) more days as my body would require that much time to re-acclimate itself.  As always, he was correct as it took two (2) days for the associated joint pain, extreme fatigue and, at times, severe abdominal pain to subside to the point I was able to get out of bed with energy and three (3) more days for me to feel comfortable with the thought of flying again.   

“Connected Health” w/ Uwe DIEGEL, iHealth CEO @ Doctors 2.0 & You 2014

Being amongst “THE” Global Healthcare Leaders at Doctors 2.0 & You

Going to Doctors 2.0 & You also meant my first international travel with a very expensive video camera which I would be relying upon to capture over twenty-five (25) Interviews with fascinating Doctors 2.0 & You Speakers and Attendees.  I was concerned about damaging the camera during travel and/or somehow erasing whatever footage I was lucky enough to record.  Then there was the international electricity situation which I had to rely upon to charge the camera after Day One of the Conference.  Would it damage the camera?  Would it damage the footage?  Would I damage myself trying to figure it out?!  I researched all of these issues prior to the trip but as many of you can already guess, nothing went according to plan, BUT everything worked out.  My health even cooperated although upon my return to the United States I was EXHAUSTED.  As a result, I came back from Doctors 2.0 & You with even more respect for Anderson Cooper! 

More importantly, the people who organized Doctors 2.0 & You were extremely helpful and they did a tremendous job in designing the different “Sessions” and selecting the different Speakers and Panel Moderators.  I truly felt as if I were amongst “THE” Global Healthcare Leaders as I learned about healthcare terms and topics which had never been so thoroughly discussed before at prior Conferences.  These new technology-driven terms and topics included Connected Health, Quantified Self, Preventative Healthcare, a Utopian Data Feed, Personalized Medical Research, Serious Games, Simulation, Lifestyle Medicine and Medical Gamification. I tried to take advantage of the situation by interviewing as many of these Healthcare Innovators as was humanly (and electricity-wise) possible.  Thankfully, everyone I approached kindly consented to an interview and embedded in this Blog Post are five (5) such concise interviews which I think demonstrate everything that was absolutely wonderful about the 4th edition of Doctors 2.0 & You held in Paris, France on June 5-6, 2014. 

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The EVENT that is “Doctors 2.0 & You” in Paris, France

1-Doc 20 and you May 24 2014

 

To encourage attendance at a Healthcare Conference or Event, especially one which requires substantial travel and represents itself as “THE international event in Healthcare Social Media, Mobile Apps & Web 2.O,” the Organizer must ensure it: informs and inspires attendees; provides meaningful and reasonably intimate discussion forums pertaining to new and/or more effective, efficient healthcare delivery and access methods and modalities; and organically generates a comfortable networking environment and a cerebral spectacle which at the same time both validates one’s attendance and also challenges it.

Orchestrating this nuanced recipe requires successful experience in putting together similar healthcare conferences such that long-established and globally diverse contacts and leaders in fields such as medicine, patient advocacy, technology, pharmacology, business, healthcare social media and hospital administration are eager to participate and up-and-coming healthcare entrepreneurs can’t wait to attend and demonstrate their latest innovations.  Perhaps most importantly, all of the foregoing must make both a pragmatic and creative impression on everyone so they leave “Doctors 2.0 & You” THINKING PROACTIVELY about implementing in their own organizations and lives (and in the lives of people they care about) all they’ve seen and heard during their 2-day stint in Paris, France regarding their opportunities with these new ideas, methods and technology.

Why I’m Psyched for Doctors 2.0 & You 

In preparation for writing this Blog post and with the aforementioned high success threshold for Healthcare Conferences in mind, I reviewed the forward-looking Agenda for the two (2) days [i.e., June 5th and 6th] of “Doctors 2.0 & You” taking place in Paris, France AND I perused through the voluminous Bios supplied by the globally diverse and extraordinary lineup of Speakers and Moderators.  Suffice it to say, I am excited to be a part of “THE international event in Healthcare Social Media, Mobile Apps & Web 2.O” organized by Basil Strategies, a digital health consultancy.  Denise Silber is the President of Basil Strategies and 2014 is the 4th iteration of “Doctors 2.0 & You” during which the focus is on the evaluation of digital health.  (Note:  This Blog Entry is of my own volition and in no way was it recommended or required by Basil Strategies.  I simply want people to know about “Doctors 2.0 & You” and why my attendance and responsibilities there will likely prevent me from updating my Blog for a while.)  

What I will be doing at “Doctors 2.0 & You”

My participation in “Doctors 2.0 & You” is two-fold:  1. I am one (1) of the Presenters at the June 5th Session, “ePatients and the Quality of Data,” supplied by, for example, Crohn’s Disease patients in which I show how to maximize the quality, and thus value, of such patient-generated data simply by diversifying both the healthcare social media platforms I rely upon as sources and the methods I use in obtaining that data; and 2.  I will be conducting succinct Video Interviews with as many of the fascinating folks in attendance as possible during the two (2) days so that I can help document the “Event” and then share my experiences and what I’ve learned with everyone who was not able to attend this year’s “Doctors 2.0 & You.”     

The Theme of this year’s “Doctors 2.0 & You”

Day One (1) of the 4th edition of “Doctors 2.0 & You” focuses on the evaluation of digital health. Day Two (2) gets more specific and seeks to address “what we’ve learned and which new areas are most promising.”  In that regard, set forth below are the scheduled Session Topics for each day.

Day 1: – Three (3) Session options for each 60-90 Minute “Session”

SESSION ONE

 Start-up Pitches – This start-up contest brings together seven (7) companies from five (5) Countries, working on diverse aspects of digital health, quantified self, mobile apps, etc.

Evaluating “Connected Health” – “Quantified Self” devices and Apps

“Connected Health” is a healthcare delivery model that uses technology to provide healthcare remotely.  Its objective is to maximize healthcare resources and provide efficient and effective opportunities for consumer patients to engage with clinicians while at the same time better self-manage their care.

 “Quantified Self” is essentially telling stories with data.  It occurs when patients self-track everyday life activities in order to improve their quality of life.

With the advent of technology, the proliferation of smartphones and the increased usage of Wearable Measurable Devices, these are emerging healthcare fields which warrant attention now.  Therefore, various aspects of both will be discussed by users and manufacturers and the Session will also explore what works and what doesn’t – as seen by one of the largest  Connected Health objects manufacturer in the world.

ePatients & Quality of Data – How reliable is patient-generated data in social media?  IS it more reliable coming from individuals or from online disease-specific communities?  Is there a method to maximizing the quality, and thus value, of this patient-generated data? What about patient reviews of hospitals and healthcare professionals?

SESSION TWO

Informal “Unconference” Google Glass Interaction – Diverse Google Glass healthcare pioneers briefly share their experiences and then participants get to try out using Google Glass in an informal setting.

“Disrupting” the practice of medicine through Digital?  The term “disruption” within the healthcare continuum can take on different means depending upon who’s speaking and what they are doing digitally to help manage their healthcare.  The Speakers specifically address Lifestyle Medicine, Telemedicine and the resulting NEW more collaborative Patient-Physician relationship is explored.

Impact of Social Media by Patients for Patients – Several experts explain how they established disease-specific social media communities from scratch and how social media is being used to help with rare diseases.

SESSION THREE

“Gamification” and “Serious Games” – Insights into the Dutch experience and the applications of each and both in Healthcare, for both professionals and patients, young and oldThe Dutch speakers explore important insights into the many facets of the Serious Game and Gamification such as techniques in hospitals and those used in continuing education for physicians.

Advanced eMarketing Pharma Workshop – “The workshop will examine recent digital advances in the patient journey; the pros and cons of where we are now; together with what needs to happen next such that the future ambitions of all those involved [patients, providers, practitioners, Pharma, payors and caregivers] can be realized.”

Social Media Curation (or selection of health web resources) with one of the most influential online physicians and “medical futurists,” Dr. Berci Mesko.  Dr. Mesko teaches health web curation to a variety of audiences (e.g. medical students) and he will adapt his teachings to the enrolled attendees.

SESSION FOUR

New Data on Physician and Patient Engagement – Analysis of never-before presented proprietary data on web conversations and behavior in both healthcare professionals and patients around the world.

Evaluating Digital Pharma Case StudiesDiscussion of three (3) different facets of Pharma’s digital involvement: European perspective on remote detailing [i.e., electronic visits with Pharma sales reps]; continuing education; and use of major social media networks.

Educating physicians in online communities – Exploration of techniques which enable physicians to learn best in online communities such as: in a Pharma-supported training program in an Australian online physician community; in a Pharma-supported Russian “gamifying” online physician community; and in an online physician network in Switzerland which focuses on improving skin cancer detection with an electronic dermoscopy device.

SESSION FIVE

Spanish Meet-up “Unconference” Session – Spanish speakers and conference participants are invited to meet at the end of Day 1 to share perspectives on the different sessions they’ve attended.

Twitter Demo: New Launch Tool – The company behind “The Healthcare Hashtag Project,” Symplur, will demo a new and exciting social tool.

Personal Blogging: What works, what doesn’t?   Uniquely successful, candid and prolific UK blogger, Michael Seres, whose personal blog leading up to his recent rare small bowel transplant due to Severe Crohn’s Disease is now the OFFICIAL patent blog of the Intestinal Transplant Association for patients to read before such transplants to help prepare them for the plethora of personal, physical, emotional, psychological, familial, social and professional issues, shares his perspective on which platform, which subjects, how to market a blog, integration with mainstream media, etc.

Day 2

Caregiver Perspective – Meet the parents who developed SUBSTANTIAL social media awareness about the devastating effects of pediatric stroke after their son was so stricken. “Hear the power of their message.”

Understanding the seemingly never-ending NEW digital healthcare tools - The bounds of patient and physician imaginations are being stretched with new modalities driven by the surge in both the entrepreneurial spirit and technological capabilities.

Integration of Google Glass for Surgery? Pharma? Payers? – Experienced Google Glass Explorers share their learned perspectives and Pharma and Payer perspectives are also addressed.

From Data to BIG DATA: Good for Whom?  There’s more data and more mediums than ever before so how do we make use of it to improve healthcare?  “Are we making use of it to improve healthcare?”  Relevant analysis of the #Doctors20 Twitter hashtag is provided by Symplur using latest visualization techniques.

Can Social Media Stop Colon Cancer?  Spreading the word through social media campaigns about preventative steps to stop colon cancer has concrete results and numbers.

Physician engagement, Community and Pharma – Online physician engagement is taking different forms and including diverse online communities and tools, such as China’s Weibo, a hybrid of Twitter and Facebook which is the most popular site in China, including  partnerships with Pharma. Pharma’s relation to all of these global communities and tools are examined.

Quantifying “Quantified Self”! – An examination of both the rise of mobile apps and connected objects, such as different wearables, and a prognosis of the future regarding them.  The groundbreaking speakers will: compare and contrast the United States and European perspectives; examine the interest of Wellness programs for Pharma; and contrast the Spanish and international perspectives.

Digital Pharma, Hospitals, Patients and Patient Drug Research – The effect of, and opportunities provided by, the new digital age and fast-changing healthcare technologies is examined from the perspectives and experiences of the different healthcare stakeholders. Pharma expert provides his perspective from within the industry about this digital convergence.

Mobile Health Best Practices – With the proliferation of mobile health, there are many questions about its “Best Practices.”  An extraordinary panel of experts provides their thoughts, ideas and answers.

MOOC [Massive Open Online Course] on Mobile Health: does it work?  Currently, more people have access to a mobile phone than they do to clean drinking water. Simultaneously,  health systems around the world struggle to deliver cost-effective care.  But with the advent of FREE MOOCs open to anyone with an Internet connection, there lies great promise.  The developer of the successful MOOC, “Mobile Health without Borders,” in which 10,000 students from all over the world participated, reports on his experience.

Serious Games: What results? – The founder of Games for Health Europe shares specific examples and his visionary perspective on the emerging sector of “Serious Games” and simulation for health.

A Look into the Future with @Berci – One of Europe’s most connected physicians and the world’s most notable “medical futurist” provides a fascinating look at the future of digital health.

Adieu

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“Facial Difference” & “Facial Reconstruction” – An Extraordinary Patient Advocate

The plight of the extraordinary woman, Vanessa Carter, speaks for itself in this 15-minute Video Interview regarding her 10+ year Facial Difference/Reconstruction Journey in Johannesburg, South Africa resulting from a 2004 Car Accident and offers advice for other patients facing “Facial Difference” issues.

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PLEASE Support Crohn’s Disease by shopping at AmazonSmile

Amazon Saves

 

SMILE.AMAZON.COM

 

 Because when you shop at AmazonSmile, Amazon will donate 0.5% of the purchase price from your eligible AmazonSmile purchases to the “Crohn’s Disease Warrior Patrol.”  Thank you.

Just cut and paste THESE LINKS into your Web Browser and then you will be on AMAZON.com – except you will ALSO be participating in the AmazonSmile Program.

http://smile.amazon.com/ch/46-1971577 

http://goo.gl/0cswWx  (Short Link)

Why help the Crohn’s Disease Warrior Patrol? Because we are a 501 c 3 Non-Profit Charity dedicated to Raising Awareness about the Potential Severity and Pervasive Nature of Inflammatory Bowel Diseases (“IBD”).  Here are Four (4) examples of Social Media interactions I’ve had JUST this past week which justify the need for Charities like the Crohn’s Disease Warrior Patrol.

Is Crohn’s Disease a mental disease?  A young but inquisitive newly diagnosed Crohn’s Disease patient posed this question on a Facebook Group as if his doctor had told him HE WAS TO BLAME FOR HIS MEDICAL TROUBLES.  I felt terrible for this teenager because that is EXACTLY what I went through during my “diagnosis journey” when a Shrink I had been seeing at the age of 22 or so called me in the hospital after I had suffered an Intestinal Obstruction and was hospitalized for 10 days and placed on extremely powerful narcotic painkillers.  After confirming I was now feeling better, he said, “DO YOU SEE WHAT YOU DID TO YOURSELF NOW?”  I pulled the phone out of the wall and once I was healthy I went back to the Shrink and got ALL OF MY MONEY back under the rationale that he was not qualified to treat a patient suffering from Crohn’s Disease.  It’s been almost 30 years, 20 surgeries and 200 hospitalizations later with my case of Severe Crohn’s Disease and I can attest to the fact that it can be a severely painful autoimmune disease which can also be disabling and so pervasive in one’s life that it has mental, emotional, financial, social, familial and professional effects. Almost forgot, it is also INCURABLE.  Accordingly,  Crohn’s Disease CAN cause a variety of mental disorders because coping with it proves to be isolating, lonely and too often misunderstood even by those who love you most.  For example, this is how I lost a close friendship shortly after being diagnosed just past my college days:   “I can’t believe you can’t come to my wedding on Sunday; we were out partying LAST NIGHT and you looked FINE, now you are in the hospital?  I don’t believe it.”  When that disbelief or “but you look fine” repeatedly occurs in different forms, in different forums, over and over again, despite you crying in pain and being left destitute from medical bills, it can make you go F’N CRAZY. 

Overheard conversation from one girl to another in a high school bathroom by a Crohn’s Disease patient named “Jane” as she was busy attending to her urgent bodily functions in a stall in the same bathroom:  “Don’t use that stall after ‘Jane’ because she has ‘that’ disease and it is disgusting.”  I recently came upon this also in a Facebook Group and it broke my heart but as I wrote the girl who shared this incident with us, these types of stories quickly reveal the character of the ignorant people who don’t understand that in Life, no-one comes away unscathed by disease and adversity.  To have Crohn’s Disease in high school is certainly challenging but it does make the person wise beyond their years and they learn to use their Crohn’s almost like a “BS Detector” when they encounter male and female relationship issues as they get older.  I’m lucky like that because I have a core group of friendships most of which are 30 to 40+ years in the making.  “Lucky” and “Crohn’s Disease” in the same sentence seems like an oxymoron but that’s what these horrific “bathroom stories” teach you when you are fortunate enough to find friends like mine.  But ignorance is rampant in the Crohn’s Disease and IBD worlds as even in dating, I have heard stories from beautiful, smart and funny women about men who were turned off by their Crohn’s Disease because they thought it was CONTAGIOUS.  It most certainly is not but it shocks me how such a potentially SEVERE AUTO-IMMUNE DISEASE can be SO MISUNDERSTOOD.  In any event, Crohn’s Disease patients spend their lives turning lemons into lemonade, physically and mentally.

Television’s Dr. Oz did a rather in-depth segment on his TV Show and emphatically concluded “Irritable Bowel Syndrome” (“IBS”) is caused by STRESS when any science-based physician or institution like THE MAYO CLINIC will beg to differ.  Stress can make ANY medical condition worse and it can also trigger a condition which a person is scientifically vulnerable to but STRESS DOES NOT CAUSE IBS; it is a REAL SCIENTIFIC MEDICAL CONDITION.   For those who are wondering, the difference between IBS and “Inflammatory Bowel Disease” or “IBD” is that IBD involves INFLAMMATION and is an INCURABLE AUTO-IMMUNE DISEASE such as Crohn’s and Ulcerative Colitis whose treatment medications counter-intuitively come with side effects as challenging as the IBD itself.  I am not aware of the scientific numbers but it may be reasonable to assume that some or many people initially diagnosed with IBS go on to getting IBD simply because it can be a natural progression and/or the more serious IBD was misdiagnosed initially.  That said, people suffering from IBS nevertheless can suffer GREATLY.  But whether it is IBS or IBD, it doesn’t help the global understanding of these VERY PAINFUL conditions/diseases when a popular Television Doctor trivializes constant diarrhea, painful constipation and paralyzing, agonizing distention.  It is bad enough when a patient’s own doctor tells him or her that THEY ARE CAUSING THEIR IBS or IBD that syndicated broadcasting of such a falsehood only makes patient mental coping problems more prevalent.  Thankfully, however, there are WONDERFULLY KNOWLEDGEABLE and COMPASSIONATE Gastrointestinal DOCTORS who make Dr. Oz look like a shyster driven by a fame agenda.

A 51-year old woman I know who’s suffered from Crohn’s Disease for approximately 35 years (i.e., “Sandra”) was recently hospitalized via the emergency room near her home in Biloxi, Mississippi.  Her condition was so serious that she was transferred to a better-suited hospital in New Orleans.  She apparently had a few VERY PAINFUL “strictures” around her J-pouch and required surgery ASAP to fix them.  I met this lovely woman on-line in some IBD-related Facebook Group a few years ago when she was trying to help other patients with answers to their Crohn’s questions based on her vast experience.  But the more I got to know her, I learned that she had no family and she lost her home and belongings (including all of her medical records) in 2005’s Hurricane Katrina which virtually wiped Biloxi, MS off the map.  Now disabled, this woman has thus far been unable to obtain Social Security Disability (“SSD”) even though she worked and paid into it for over 20 years because she cannot afford to go for the doctor appointments and diagnostic tests needed to medically substantiate her current SSD application.  So when I heard she was all alone in a New Orleans hospital facing surgery, I turned to the power of Social Media and with the help of her friend Kathleen Fox Polizzi within a FEW HOURS a tremendously compassionate volunteer (i.e., Robin Kingham) with the Louisiana Chapter of the Crohn’s and Colitis Foundation of America (“CCFA”) had visited her twice and people from around THE WORLD were sending her “good luck” texts and whatnot.  Then I tracked down Robin Kingham and asked her if she would be so kind as to drive Sandra from New Orleans back to her home in Biloxi, Mississippi, when she was discharged from the New Orleans hospital?  Robin beat me to the punch and explained she already planned on doing that 2-3 hour drive as a surprise to Sandra.

So, with the help of people like Kathleen Fox Polizzi and Robin Kingham, the Crohn’s Disease Warrior Patrol is making progress.  To sign up to be a Warrior  or a “Patient-in-Need,” please visit our website.

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Contrasting Neurologists – The Ridiculous to the Sublime

Neurology April 13 2014

When stricken with a challenging medical condition, most people seeking the opinion of a referred-to medical specialist, such as a Neurologist, assume each will reach the same conclusions, conduct the same exams, and apply the same thoroughness and attention to detail in treating the patient with dignity, compassion and respect. Au contraire, as my recent experience proves with respect to Consultations with Two (2) Neurologists my Mom and I recently interacted with to treat my Mom’s condition of “Left Homonymous Hermianopsia” (“LHH”) which was correctly diagnosed by a Neuro-Optometrist while my 78-year-old Mom recuperated in a Rehabilitation Facility (“Facility”) from Double Knee Replacement Surgery.  In laymen terms, LHH is the loss of half of the field of vision on the same side in both eyes.  Therefore, in both of my Mom’s eyes, the left side is seriously compromised and this causes “blind spots” and/or she doesn’t always see or recognize things which quickly approach her like a close relative coming over to kiss her hello.  Apparently, it occurs as a result of a stroke or a traumatic brain injury from a fall and it also includes tormenting, but seemingly very specific, cognitive difficulties with respect to the judgment of “spatial” relationships.  As a result, my Mom’s “depth perception” is not calibrated correctly and this affects her ability to perform many daily tasks such as driving, cooking (and in her day she was a GREAT Cook!!) and even walking 10-feet from the car to a favorite local store I always drive her to in order to complete simple household errands.

The day-to-day effects of “Left Homonymous Hermianopsia”

I live with my Mom so I have known for 2 years or so that something was “off” about her as her depth perception at times seemed odd and she suffered occasional “spatial incidents.”  Those spatial incidents included suddenly falling down when the gradient of a concrete walkway increased by only an inch, going to the car’s rear door when I would pick up her at the supermarket when she should have opened the front passenger door, and being unable to sign her name on, or often even near, a designated line.  Then there is the short-term memory loss which starts out as forgetting where keys are left and soon includes the inability to work the TV Remote Control.  Mind you, my Mom has remained competent throughout this time and I still enjoy talking to her more than anyone else on the planet.  But, at unpredictable times, it has been frustrating to have an engaging and profound conversation with her about politics one minute, only to witness her complain the next minute about a beautiful functioning Dresser being broken because she was unable to “slide” a dresser drawer into it perpendicularly instead of horizontally.   Accordingly, if you spent 10 minutes with my Mom, you’d think she is a firecracker for her age with a quick wit to match but any additional time with her would surely reveal this tantalizing problem with “spatial relativity.”

 Diagnosing “Left Homonymous Hermianopsia” in my Mom

All along I thought her depth perception problems logically had to be attributed to her vision so during her recent knee surgery and subsequent physical rehabilitation when several nurses at the hospital and then at the Facility asked me if I knew my Mom had vision problems, I asked the Facility’s eye specialist to exam her.  Apparently, within only a few minutes, he was able to diagnose a rather large “Cut” in her Left Field of Vision and suggested a Brain MRI to confirm his suspicion of LHH based upon additional anecdotal information he had acquired from me, other members of my family and the staff at the Facility.  I then contacted my Mom’s long-time Ophthalmologist to obtain all of her medical records and he told me we needed to see a Neuro-Optometrist to confirm a diagnosis such as LHH.  Coincidentally, the Facility’s eye doctor was also a Neuro-Optometrist.  Therefore, the family treatment plan was to compare the new Brain MRI to another from approximately a year ago (as we tried to look into this depth perception problem then but the MRI was basically normal “for her age”) at this Neuro-Optometrist’s  office shortly after her discharge from the Facility.  We did all that and the diagnosis was confirmed by this Neuro-Optometrist with his adamant referral to a neurologist as to “Why” this happened and “How” it could be treated.  We never witnessed my Mom having a Stroke, but it is possible she had one.  We had seen or been around her when she fell, but no particular fall seemed worthy of an emergency room visit, which we were told was generally the benchmark for such a fall to cause LHH.  We left this Neuro-Optometrist’s office feeling good about at least having a Treatment Plan to help my Mom and consulting with a Neurologist was obviously the focus of that Plan. 

The Comfort of a Formal Diagnosis

As explained in previous Blog Posts of mine, “Diagnosis Journeys” can be arduous, expensive and emotionally challenging.  Knowing this and how my Mom must have been struggling the past two (2) years or so, it was comforting to have a formal diagnosis and then even my Mom came on board and began admitting her silent struggles whereas up until this point she was reluctant to seek a diagnosis for fear of something much worse being discovered.  More specifically, she had been married to my Dad for over Fifty (50) years and he passed away in 2008 from a confluence of serious heartbreaking medical conditions which culminated in Sleep Apnea-induced Dementia such that the combination of heart and lung problems from two (2) bouts with Lymphoma, Chemotherapy and Radiation had done such damage that the Dementia destroyed his quality of life.  His systemic physical and psychological pain was simply too much for any man to withstand especially when he was unable to love his healthy loving wife and best friend of over 60 years in a manner consistent with the way he felt about her.  My Dad was one tough customer and I thank him for passing onto me his resiliency trait but there was no consolation for my Mom and that’s why she was reluctant to learn what “Father Time” had possibly done to her mind and/or body.

 Looking for the “Right” Neurologist

While LHH sounds rather tame in terms of medical conditions to live with, I can tell you from living with my Mom that someone must be around her during most of her waking hours to make sure her condition doesn’t cause unexpected physical harm to her.  This may not be true with other LHH patients but when she’s 100% healthy, I like to refer to my Mom as being “frequently wrong, but never in doubt” and it is this determination and confidence which worries us about leaving her alone.  It is also one of the many reasons why I love her so much.  So, we began looking for the “right” Neurologist for her.  But how does one do that these days with so much more additional information available via the Internet such that one need not necessarily rely upon Word-of-Mouth recommendations?  Moreover, the Neuro-Optometrist who correctly diagnosed my Mom had suggested a few neurologists in his absolutely thorough treatment of her. Those things being said and also living in Northern New Jersey with relatively easy access to New York City doctors, there is always the temptation to find “the best” and those doctors are usually located in major cities such as New York City.

Having much experience myself with a variety of serious medical problems for the past 30 years due to my battles with the chronic, autoimmune and incurable Severe Crohn’s Disease, I decided to contact one of the smartest, most professional, kind and compassionate doctors I knew and asked her whom she would send her mom to if she were stricken with this condition.  Thanks to this pulmonologist, we quickly got the name and contact information of that neurologist and took the soonest available appointment which was approximately 3-4 weeks away.  For the sake of making this Blog Post about the underlying problem and not about a specific neurologist, let’s refer to this female doctor as “Neurologist #2.”  But the day-to-day stress of managing the LHH was intense and taking a toll on everyone so other family members had similarly qualified a few different neurologists located in the Metropolitan New York/New Jersey area so I began looking them up on the different Physician Rating websites.

We figured my Mom would need two (2) neurological opinions anyway so it made sense to pursue a second neurologist.  Sure enough, one of the doctors recommended by a family member had GREAT ratings on these Physician Rating websites and they were also similar to the ratings of Neurologist #2 who we were seeing in a few weeks.  That seemed to signify the end of our neurologist search so we called this other neurologist (“Neurologist #1”) and he had an appointment available only a few days away.  We took that appointment figuring it would at least provide some psychological comfort and we would learn more about my Mom’s condition prior to our appointment with Neurologist # 2 whom we figured would become her Treating Neurologist based upon her affiliation with a very prestigious institution and by virtue of the manner in which we were referred to her (that is, by my excellent and compassionate pulmonologist).

The Appalling Neurologist #1 Experience Begins

 Excited to get some answers, we got to the doctor’s offices early.  They say you don’t get a second chance to make a first impression and he failed that test when my Mom, still recovering from her Double Knee Replacement Surgery and relying on a cane or a wheelchair, when necessary, had to navigate a STEEP uphill parking lot with just her cane and leaning on my shoulder because it had no close handicapped parking and no accommodating wheelchair access was available, as it usually was at the doctors’ offices my Mom frequented.  Please also note that I am slowly recovering from Hip Replacement Surgery so my Mom’s reliance on me to traverse this “hill” was almost too much for ME to bear. I thought this steep uphill patient parking lot was odd especially since as a highly touted neurologist, much of his patient population had to be older people or disabled patients who desperately needed these physical accommodations.  However, not wanting to “judge a book by its cover,” we proceeded into his “office” which was a cheaply converted house with MINIMAL patient amenities.  The walls were old, the floors seemed ignored for years and the doctor’s office was more appropriate for a civil employee at a local, quiet municipality.  But, the man was highly praised on-line as a neurologist so I kept encouraging my Mom to be positive.

Neurologist #1 – “So why are you here?”

After exchanging pleasantries sitting across from the doctor in his medical office/exam room yet devoid of any medical equipment such as an x-ray illuminator, impressive medical textbooks or even a patient exam table, I politely explained my Mom’s diagnosis of LHH and simultaneously handed the doctor the CD results of the two (2) aforementioned MRIs as well as their respective written ONE (1) PAGE diagnosis reports along with the detailed written analysis and diagnosis from the Neuro-Optometrist.  After giving this CRUCIAL information no more than a cursory “acceptance” acknowledgement, the doctor placed the information “package” on his desk as if I had given him yesterday’s newspaper and looked at my Mom and I and said something substantially to the effect of: “So why are you here?”

I was surprised by his question given that we were explicitly told to see a neurologist and I was also annoyed at his dismissive attitude which indicated we were somehow bothering him by our mere presence in his office/exam room.  After all, I thought, he accepted the appointment knowing my Mom’s diagnosis and I assume he was going to accept payment from Medicare for the services rendered during the appointment so you’d think he’d at least exert some effort to earn his money?  My skepticism aside, I could also feel the “hope” slowly leak from my Mom’s face as if this extremely cold interaction was indicative of the beginning of the end of her active life and charming personality as she knew it to be but I ignored my instinct to physically “school” this doctor on the proper way to treat patients and I quickly and succinctly explained the essence of the information I had given him.  He listened but each time my Mom interrupted me to elaborate on her own story to better demonstrate her symptoms, he literally gave her “the look” as if to say, “It’s bad enough I have to deal with your son talking at me, lady [a/k/a “his PATIENT”], so why don’t you keep your mouth shut so we all can get out of here sooner?”

Neurologist #1 – Treatment Plan: “Same Time, Next Year”

When I was done speaking, he told us that all we could do was schedule an MRI in a YEAR and then come back to see him so he can ascertain whether or not the LHH had gotten worse.  He did not say what he would do if that happened; he just flippantly suggested we do this despite my Mom and I telling him about her day-to-day challenges with this condition and how a doctor specializing in diagnosing this condition had been adamant that we see a neurologist to understand why the condition occurred and how it could best be treated to at least improve my Mom’s quality of life.  That’s when I started feeling more than a little patronized by this doctor who should have retired to play golf if he had no interest in HELPING or LISTENING TO HIS PATIENTS.  I remarked that I found it strange he took our appointment knowing my Mom had LHH but asked us why we were there and also told us the ONLY TREATMENT was to have annual Brain MRIs and then pay to see him again for what amounted to, no medical advice.  I was thinking I could have had the same experience visiting my friend Eric, and he’s an attorney, or my friend Rich, who runs an Office Painting business.  Call me crazy, but such a qualified referral from a Neuro-Optometrist who had been DEAD-ON in diagnosing my Mom with a very complicated condition warranted a more substantial Treatment Plan from a neurologist than the mere scheduling of an annual encore performance of NOTHING.

Sensing my FURY with his complete CONDESCENDING BULLSHIT, Neurologist #1 reluctantly started explaining the science behind LHH and that my Mom must have had a Stroke in order to be in this condition.  We explained that we witnessed no such event nor did she fall so severely so as to cause such a traumatic brain injury.  Without inquiring into my Mom’s lifestyle or history of falls, and thus based on nothing but a coin flip in his mind, he maintained she “had a stroke.”  I asked if there were any additional diagnostic tests to prove that, and more importantly, I respectfully inquired if there were any tests or medications to help prevent her from having another stroke, if she had one in the first place?  With not one muscle changing in his face, he just said, “No.”  I responded, “Is there ANYTHING to be done to determine her present state of mind?”  He looked at me as if I had just ruined his tee time and went on to administer the most unscientific spur-of-the-moment Dementia Test I had ever heard of or witnessed and I was somewhat familiar with them from my days of practicing law and representing “alleged mentally incompetents.”

Neurologist #1 – Dementia or “Left Homonymous Hermianopsia?” – Flip a F’n Coin

Again, the doctor did not move from behind his desk nor did he refer to any paperwork when he started asking my Mom fairly simply questions to test her memory retention skills.  He asked her to remember 3 simple words in a specific order and continued asking her “time and place” questions.  She did well with her answers and she also was able to recall the three (3) words without any problems but then he drew a simple rectangle on a piece of paper and placed it in front of her and asked her to replicate it.  Since my Mom was an artist at one point in her life and could paint beautiful landscapes and portraits from scratch, in my mind, this was a significant test.  She drew a 1-2 inch straight line and kept going over it with the pen thinking she was creating a rectangle when all she was doing was drawing a very BOLD 1-2 inch line.  Based on our detailed conversations with the Neuro-Optometrist who diagnosed her with LHH,  this was evidence of how severe her LHH problem was with respect to spatial issues such as drawing a rectangle and making sure the overall shape was correct and the opposing lines were generally parallel with one another.  Despite my Mom’s obvious poor performance on this spatial part of the spontaneous test, the doctor was un-phased and then said something to the effect of, “Okay, so we are done here, right? You’ll contact my office in a year or so and we’ll do another MRI of your Brain.”  He then began to get up from his chair.

THE WORST DOCTOR CONSULTATION I HAD SEEN IN 30 YEARS

My Mom thought she had just witnessed the movie trailers with a film feature sure to follow but the doctor got up to leave giving off the impression of finality similar to end credits as they begin to roll down the screen.  She started to verbalize more specific examples of her experiences with LHH and he turned around and looked at her like he had heard enough as if she had been a loser on a TV Game Show who wouldn’t leave the contestant’s chair when asked to do so.  For a few seconds, I felt very sad as I could feel my Mom’s world coming apart at the seams but my outrage took over at this doctor’s disgusting behavior toward his patient, my Mom, and how that repulsive behavior could unfairly affect my Mom even though all she had really witnessed and experienced was THE WORST DOCTOR CONSULTATION I HAD SEEN IN 30 YEARS with my chronic, incurable and severe disease which has caused me twenty-plus (20+) surgeries and two hundred (200) or so hospitalizations.

As the doctor left the room and my Mom and I were left to pick up the medical information we had brought to help facilitate the doctor’s understanding of my Mom’s situation, I quickly changed my focus to my Mom and concentrated on making sure she forgot about this douchebag as soon as possible knowing there was nothing I could do to make this doctor act like a professional physician.  I apologize for my choice of spicy language but there are no other words to accurately convey what occurred with Neurologist #1 or to describe him in his professional capacity.  We left the office but as I carefully traversed down the parking lot hill with my recently replaced left hip to pick my Mom up at the top, near the entrance to the office, I was getting angry that this doctor was going to be paid by Medicare for what had just taken place when he should have been reported to the New Jersey State Board of Medical Examiners for both his inept Treatment Plan and the condescending manner in which he had treated his patient.

After helping my Mom get back safely into our car, I went back into the converted home office and saw Neurologist #1, already dressed to leave, joking around behind the counter with his Office Manager. They looked at me as if I had come back to find lost eyeglasses and I said firmly, “My Mom’s diagnosis is, what it is, but all you did in that excuse for a Consultation was remove all Hope my Mom and I had built up in anticipation of this meeting with you.  Your Treatment Plan makes no sense and if someone treated your mother in the same patronizing manner as you treated mine, you’d be incensed.  How you received positive reviews on Physician Rating websites is beyond me.”  I then turned around and returned to the car and comforted my Mom.   Thankfully my Mom is perceptive enough to realize what she had just experienced so we proceeded to “turn the page” and waited for her appointment with Neurologist #2.

Neurologist #2 – Finally, a THOROUGH and Compassionate Professional

While we were not set to meet with Neurologist #2 for 2-3 weeks, when I made the appointment I had asked the Office Manager to call us for an earlier appointment if another patient cancelled.  Almost like a sign from above, we received that phone call 3 days after the above “Consultation” with Neurologist #1 and were scheduled to meet with Neurologist #2 the next day, Saturday.  Wait, a doctor who works on Saturdays?  As I said above, you don’t get a second chance at making a first impression but this time that first impression was of a dedicated and compassionate doctor who tried to be available when she was most needed by her patients.  I again gathered together all of the diagnostic information referred to above and brought it to the Consultation.  We parked in a handicapped parking spot (my Mom has a Handicapped Placard) and since the entrance to the doctor’s office was a bit of a walk, we easily got a wheelchair for my Mom and wheeled her to the office via the wheelchair ramp.  For this Consultation, I did not need a Walking Stick just to get out of the parking lot.

Neurologist #2 to Neurologist #1  – “From the Sublime to the Ridiculous.”

After filling out various medical and insurance forms while this doctor reviewed the same exact diagnostic information I had given to Neurologist #1 only to watch him cast it aside to ask us what we were doing at his office, Neurologist #2 gently came into the Exam Room and introduced herself to my Mom.  She immediately demonstrated her specific knowledge of my Mom’s condition and then sat down and listened to me, my sister and my Mom succinctly describe her LHH condition.  She asked questions to verify different facts and then she proceeded to conduct a thorough “sensory” exam of my Mom by literally evaluating her nerves’ reactions from head to toe.  Whenever she came across what appeared to be an abnormal reaction, she noted it in my Mom’s chart but then a few minutes later retested that part of her body to make sure of any abnormalities.  Neurologist #2 was gentle with my Mom in both the way she touched and listened to her.  Compared to my Mom’s experience with Neurologist #1, this experience was sublime and the other ridiculous.  Now I know the true meaning of the phrase: “From the sublime to the ridiculous.”

Neurologist #2 – The Exam AND Consultation

At the appropriate time, the doctor was kind enough to entertain questions from each of us and her answers revealed her intentions to perform a COMPLETE WORKUP of my Mom to determine the cause of the LHH and simultaneously start Occupational Therapy to help my Mom combat the day-to-day challenges caused by the condition just in case that is her only recourse or a part of the ultimate Treatment Plan.  In response to our concerns about the culprit being a Stroke and us wanting to prevent future such occurrences since we never witnessed it, the doctor immediately, politely and compassionately “ordered” my Mom to take a Baby Aspirin every day.   She then explained the various diagnostic tests she wanted my Mom to have and asked me to make sure she hadn’t already gone for these tests within the past year since Medicare would not pay for the test under those circumstances.  Those tests are an Echocardiogram and a “Vasc Carotid Duplex, Full.”  The doctor also tested my Mom’s blood for various minerals, B12 and B6 and made sure we were going for a more comprehensive blood test regarding her cholesterol and sugars for which she would have to fast.  My Mom’s Internist had prescribed such a blood test and I had indicated we intended to go for it on Monday.

Immediate Post-Exam Follow-Up with Neurologist #2 / #1 – Nothing

We must have spent more than 30 minutes conferring with Neurologist #2 then left with a laundry list of tests, procedures and occupational therapy prescriptions to follow-up on whereas the Consultation with Neurologist #1 consisted of a 15-minute conversation and the only follow-up required was calling back in a year to schedule another Brain MRI.  I almost forgot, we also left the office of Neurologist #2 with HOPE and SMILES.  More specifically, as we checked out of the office of Neurologist #2, I stopped by the Office Manager’s desk and she handed me several documents.  One was the prescription for Occupational Therapy and another was a 4-page “Clinical Summary” of my Mom’s exam which specifically enumerated both the “Health Issues Reviewed” during the Exam and the currently proposed “Treatment Plan” which included the list of the aforementioned prescribed tests and activities.  When we left the office of Neurologist #1, all we had to do was remember to contact him IN A YEAR TO SCHEDULE ANOTHER BRAIN MRI.  He did not prescribe Baby Aspirin to help prevent another Stroke, if, in fact, one had occurred; nor did he express any interest in examining my Mom’s nerves, heart or Carotid Artery.  Neurologist #2 also scheduled a follow-up exam for approximately one (1) month later at which time she planned to conduct the Cognitive Test which, according to the Office Manager, is standardized and based on written questions and observations used by the doctor each time she conducts such an evaluation.  Neurologist #1 “made up” his Cognitive Test of my Mom on the spot.

Conclusions

Some Doctors Suck & Some Doctors Don’t Care – just like in other Professions

Just like in ANY profession, some doctors are bad at their job and some simply don’t care.  For traditional reasons and because of rote human nature, we don’t expect this in the practice of medicine but as the above proves, it does happen.  Healthy people having to suddenly address a medical problem after many years having never gone to a doctor, or having never been hospitalized, typically don’t ever expect doctors to be lacking in humanity or humility, so for THEM, Physician Rating website grades provide valuable information from which to make choices of physicians.  I pity them because as the above proves, GREAT physician website grades do not make an even good physician.

Word-of-Mouth Physician Referrals are more Reliable that Website Ratings

The fact that Neurologist #1 received GREAT reviews on several Physician Rating websites is exactly why I think such Doctor Rating websites are unreliable.  There are too many unknown variables to render such Doctor Ratings accurate.  Who knows, Neurologist #1 may have received terrible personal news immediately prior to my Mom and I walking into his office and/or he simply didn’t like me?  Maybe Neurologist #1 had phony patients provide the aforementioned Ratings?  I don’t know the answer to those questions but I do know that in my experience as somewhat of a “professional patient,” rating doctors on an objective scale is like devising a rating scale for male or female “attractiveness” or “good-looking-ness.”  Different characteristics carry different weight to different patients just like a woman who is a “9” to me might be a “4” to someone else, and vice versa.  Accordingly, please be wary of Physician Rating websites and try to use social media to network for “Word-of-Mouth” physician referrals because the elaboration of subjective discourse regarding a physician-patient “transaction” will enable you to determine whether or not that physician is appropriate for what you seek and/or need.

Be mindful of the Psychological effects of exposing Patients to Apathetic Doctors

As for the “extraordinary” work performed by Neurologist #2, it is actually commonplace amongst the many WONDERFUL Physicians who listen to their patients and actually care about them. It only seems “extraordinary” when compared to the listless, arrogant, patronizing and condescending work ethic of Neurologist #1.  In that regard, please always keep in mind the psychological effects of exposure to apathetic professionals like Neurologist #1. It’s one thing to remain unemotional to ensure that a patient receives the best possible care but it is an entirely different matter when a neurologist is so indifferent he forgets to “prescribe” something as simple as Baby Aspirins when a patient with LHH presents with the propensity to have Strokes.

Pay attention to the “Little Things”

Please also pay attention to the little things like Neurologist #2 seeing patients on Saturdays or Neurologist #1 not caring about his patients’ safety by building a parking lot more suitable to mountain climbers than to patients with Double Knee or Left Hip Replacements.  (By the way, it is my understanding Neurologist #2 routinely sees patients two (2) Saturdays every month and has been doing that for some time.)

The “right” Physician for a Patient isn’t necessarily the “best” Physician

Finally, the “right” physician for a patient is not always the “best” because in my Mom’s case, for example, I know she wants a doctor who will listen to her and who will be compassionate with her.  For whatever reason, she also prefers a female because at her stage in life she thinks it is more probable she will obtain such care from a female physician.  I know my Mom’s hypothesis is WRONG and that she can receive gentle, compassionate care from a male physician but this is what makes her comfortable and provides her with the “hope” she now needs to battle a very complicated medical condition.

I trust Names are not necessary in this Blog Post to appreciate the learning points of my recent experience with these Neurologists

This was an emotional Blog Post for me to write and I did not feel well while writing it but I think it is important to share what can be learned by comparing and contrasting my REAL experiences with these two (2) VERY DIFFERENT Neurologists.  While I have not named Neurologist #1 in this Blog Post, I usually believe in comic Jay Mohr’s edict to “put your name on it” whenever making complaints but I don’t want to compromise my Mom’s care with Neurologist #2 by purposely “outing” Neurologist #1 when I could just as easily communicate the learning points from these experiences without divulging names.  I hope readers can understand that.

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Adjusting to Ostomy through physicality of playing Hockey

1-Berlcak and Weiss 1

 

April 4, 2014

I recently had the privilege to conduct a Video Interview with the soon-to-be-announced winner of the 2014 “IBD Heroes Award,” Mr. Andrew Berlack.  This Award is being funded by my Non-Profit Foundation, “Crohn’s Disease Warrior Patrol,” [The "CDWP"] because we want to highlight POSITIVE stories about people with Crohn’s, Colitis and any other Inflammatory Bowel Disease to provide much-needed INSPIRATION living with IBD requires on a daily, hourly and often minute-by-minute basis.  There will be more 2014 IBD Heroes because we want it to be dynamic so that when we find a great story we can share it and showcase that “IBD Hero.”  It looks like the only limitation will be my ability to edit and post the video interviews with the winners!!!!   

I don’t want to spoil the formal announcement of Andrew Berlack’s remarkable story but I think its message is SO INSPIRATIONAL on several different levels that I couldn’t resist providing this “teaser”:

Andrew Berlack WAS a Federal Law Enforcement Officer (he carried a weapon, etc. and was a real Police Officer) and then he got Crohn’s Disease and ultimately had his entire rectum removed and had an Ostomy put in its place.  When he was still working as a Police Officer, but suffering terribly from the unpredictable hospitalizations and bouts with Crohn’s Disease, his fellow police -men and –women donated to him some of their vacation days to cover the growing amount of his sick days to stave off their accumulation from disqualifying him from being a Cop – that’s how special this guy is.  And it gets better …

He was nevertheless forced into filing for Federal Disability and spent the next 4-5 years learning to live with his ostomy before he considered his next step in life.  Most people do this by experimenting with going to different public places with friends or by eating diverse foods.  Not Andrew.  He chose to assimilate to the world of being an Ostomate by PLAYING ICE HOCKEY.  It turns out the “physicality” of hockey tested his ostomy to the extreme and those positive experiences of once again “feeling normal” gave him enough confidence to move forward with his Life Plan (he also got MARRIED during this time period) such that he began working a few hours a week and kept a fire burning for one day returning full-time to Law Enforcement.

Being “consistent” and holding down a physically-demanding job with the ostomy took a few years for Andrew to adjust to but those worries paled in comparison to those which required him to sharpen the tough and reactionary mindset required by any law enforcement position.  When I interviewed him, I got the feeling his ubiquitous visualization of 100% positive ostomy outcomes on the physically-demanding hockey rink helped him overcome any such worries but there were practical obstacles which couldn’t be scaled with the help of a slap-shot.  The most significant of which involved the weight and snug fit of the typical uniform belt worn by law enforcement officers as it conflicted with the space needed for his ostomy to lie still and uninterrupted. But one night, completely by chance, Andrew saw a policeman on television wearing all his necessary gear on his suspenders.  It took me a while to grasp the visual he was describing but suffice it to say, horizontal was no good and vertical was life-altering for Andrew as it fulfilled whatever gear requirements he had to carry while preserving the necessary space for his ostomy so as to avoid any messy accidents.

The fire burning inside him was satiated at first by working a few hours each week in Retail Shopping Centers in “Loss Prevention” policing shoplifters.  But once he learned of the different way to “wear” his belt,  he was transformed back to a life of potential normalcy.  In that regard, Andrew most recently got a job as an “Armed Protective Agent” for a private security company where his various law enforcement assignments include protecting government witnesses and the like.  He is not “back” on the police force YET but he is back working and helping enforce the law and living out his dream of protecting people which he thought was lost due to his Crohn’s Disease and the ostomy.

Using our Minds to Teach our Bodies

I am presently organizing some National Hockey League (NHL) surprises for Andrew as his “IBD Hero” Award and you will hopefully hear about it through various promotional efforts but I found the power of his mindset as strong as any medication I have ever taken in my 30 years with Crohn’s Disease.  I was also amazed he got married during the middle of his acclimation to the ostomy and while being technically “Disabled.” That proves there’s hope for fools like me who stop dating when “the shit hits the fan” for fear of harming what otherwise might be “the relationship” I’ve been seeking my entire life.  That got me to thinking how Andrew’s story is inspirational on a variety of levels and thus I defer to readers of this Blog Post to take from it what you need in order to overcome the obstacles of Inflammatory Bowel Disease which you face and resume your life pursuits.  The life dream may be a little different after a diagnosis of IBD but the fire can burn a long time when we use our minds to teach our bodies.  leave a  comment  BUTTON