The Patient Perspective-Michael A. Weiss

“Entyvio” & Inflammatory Bowel Disease

Video 1 of 4 HOW does “Entyvio” treat Crohn’s Disease &/or Ulcerative Colitis?

This is Video 1 of 4 from my March 29, 2016 interview with GLOBAL Inflammatory Bowel Disease (IBD) EXPERT, Dr. Mark L. Chapman, from the IBD Center at Mt. Sinai Hospital in New York City.  Dr. Chapman is an IBD EXPERT in every sense of the word as he is ONE (1) of only 2 or 3 still-practicing gastroenterologists who were trained by the illustrious Dr. Burrill Bernard Crohn whose advancements in gastroenterology enabled him to identify the disease which bears his name.

In this video Dr. Chapman explains the science behind how Entyvio works as a Biologic drug to treat Crohn’s Disease and Ulcerative Colitis.  More specifically, Dr. Chapman explains Entyvio’s mechanism as being a “lymphocyte trafficking blocker” placing it in a different class of Biologics than the other available Biologic drugs (i.e., Remicade, Humira, Cimzia and Simponi) which are all anti-TNF activity suppressors.  Dr. Chapman also explains how Entyvio is the result of improvements to the drug, “Tysabri,” which left Crohn’s Disease and Multiple Sclerosis patients vulnerable to a dormant, but potentially fatal, brain disease.  As the IMPROVED VERSION, Entyvio thankfully no longer presents this horrific brain disease risk for IBD patients.  However, Entyvio’s popularity is nevertheless plagued by the mere potential of activating such a catastrophic brain disease even though the drug is no longer capable of doing so.

Video 2 of 4How Doctors are REALLY using Entyvio to treat Crohn’s Disease & Ulcerative Colitis

This is Video 2 of 4 from my March 29, 2016 interview with Dr. Mark L. Chapman from […]

“Entyvio” vs. Crohn’s Disease & Ulcerative Colitis?

This is Number One (1) of FOUR (4) short Videos re: the viability and implementation of the Biologic drug “Entyvio” to treat Crohn’s Disease and Ulcerative Colitis, the 2 most common Inflammatory Bowel Diseases (IBD). These Videos are the result of my March 29, 2016 interview with Dr. Mark L. Chapman of the IBD Center at Mt. Sinai Hospital in NYC. Dr. Chapman is an IBD EXPERT in every sense of the word as he is 1 of ONLY 2 or 3 still-practicing Gastroenterologists who were trained by the illustrious Dr. Burrill Bernard Crohn whose advancements in gastroenterology enabled him to identify the disease which bears his name.

Dr. Crohn (by his achievement) and Dr. Chapman (by his actions, knowledge, compassion and heart) have been incredibly important in my life.  It certainly was no fun growing up in hospitals in different states as I went to college then business school and then law school and had catastrophic experiences with my disease at every stop along the way but with overwhelming adversity came prodigious “daily” clarity and that “BS Detector” has served me well, at least with respect to the people I’ve been privileged to call my friend.   To that end, I was recently asked to write a Book Binder Endorsement for a very cool book on Crohn’s Disease written by a witty, creative, British Crohn’s Disease patient, Kathleen Nichols.  I liked the Book very much and I remember highlighting her actual words from the part about “Relationships” because she NAILED IT by writing: “Fair-weather friends are little to no use to Crohn’s Disease patients, as we often require an umbrella more than sunglasses.  Snow shoes over sun lotion.”

Kathleen’s take on “Relationships” when you have Crohn’s Disease is so DEAD-ON because it […]

Aging with Crohn’s Disease

The many looks of Glenn Frey The many looks of Glenn Frey

      The picture above is from a Fitness Campaign featuring Eagles co-founder Glenn Frey who passed away last week at the tragic young age of 67.  This is UNRELATED to the main topic of this Blog Post but since I presently can’t type without severe pain due to a shoulder injury for which I am undergoing surgery on Monday, January 25, 2016, I wanted to acknowledge it before it was too late. I was a huge Eagles fan and even moved out to California after reading about the charged creative and personal lifestyles they were leading.  I had the privilege of giving Glenn Frey this framed poster after too many people made fun of me for hanging it on the wall in my office. I reached out to a very well-connected Hollywood friend of mine to offer it up to Glenn.  I never thought he’d actually be contacted but a few days later Glenn Frey CALLED ME and said he wanted it.  I guess it captured memories of a certain time in his life which he cherished.  After all he and the Eagles had done for me, it felt good doing something for him. As a songwriter I always thought he and Don Henley formed a uniquely formidable team very much like Paul McCartney and John Lennon.  They complimented each other’s style in a manner which balanced out the song and gave it meaning to so many people in so many ways.  I don’t like reading about how celerity heroes of mine died.  I choose to celebrate and remember how they lived.  Glenn Frey knew how to live and my heartfelt sympathies go to his […]

abcs of IBD, Crohn’s & Colitis

IBD = Inflammatory Bowel Disease of which Crohn's Disease and Ulcerative Colitis are the most common. IBD = Inflammatory Bowel Disease of which Crohn’s Disease and Ulcerative Colitis are the most common.

      In light of it being Inflammatory Bowel Disease (#IBD) Awareness Week, below are some quotes/comments I’ve made over the years and some I’ve come across from friends, patients, IBD parents and IBD doctors, along with some personal commentary which I think provides quick and accurate insight into what it’s like to battle these incurable, autoimmune and chronic diseases. Therefore, if you are newly diagnosed, an existing IBD patient going through a tough time or you have a friend with IBD and want to better understand what he or she goes through, please read this “list” I’ve compiled from my 30 years of living with Severe Crohn’s Disease:

  1. “You been hospitalized so many times, you’re like a pro at this so I won’t even bother visiting you since you’ll be out soon.” OR “I want to visit him in the hospital but he’s back in for that ‘Crohn’s Disease’ and I don’t want to interrupt him running back and forth to and from the bathroom while he’s in such terrifying pain.  Besides, what would I say?” [Scenario 1 – Actually, the more I’m hospitalized, the scarier it gets and the more I crave the normalcy of my friends and home life. So hospital visits from my friends are more important to me now at 53 then they were when I was first hospitalized over 200-times-ago at the age of 21 or so. Scenario 2 – Whenever I have Crohn’s surgery, I tell my friends to always call beforehand and not to surprise […]
December 6th, 2015|Categories: Auto-Immune Disease, Autoimmune Diseases, Biologics, Bottom-up IBD Treatment, chrones, chrones disease, Colitis, Coping with Crohns, Crohn's, Crohn's & Colitis Awareness Week, Crohn's Blog, Crohn's Disease, Crohn's Disease Blog, Crohn's Disease Mainstream Awareness, Crohn's Disease Surgery, Crohn’s Disease Pain, Crohnie, Crohnies, crowdsourcing Crohn's, Curing Crohn's DIsease, Diagnosis Journey to Crohn's Disease, Doctor Patient Relationship, Eye Problems from Crohn's Disease, Gastroenterologists, Gastroenterology, genetic predisposition to Crohn’s Disease, Hospital Patient, Hospital Patient Experience, Hospitalizations, Humira, IBD, IBD & Pain Management, IBD Hospital Admissions, Indeterminate Colitis, Inflammatory Bowel Disease, Intestinal Obstructions, Managing Medical Debt, Medical Bankruptcy, Michael A Weiss, Narcotic Pain Medications, opioids, Pain Management Doctors, Pain Management Physicians, Patients as "People", Patients as Consumers, Professional Patient, Professional Patient Blog, Psychological Effects of Crohn's Disease, Raising Awareness of Crohn's & IBD, Rare Diseases, Severe Crohn's Disease, Top-down IBD Treatment, Treating Pediatric Inflammatory Bowel Disease, Ulcerative Colitis|Tags: , , , , , , , , , , , , , , , |0 Comments

Lack of Problem-Solving in Medicine

Interestingly, I found no usable images under "Medical Patient Problem Solving" Interestingly, I found no usable images under “Medical Patient Problem Solving”

      Happy holidays to all.  I’ve been on a self-imposed hiatus from regularly contributing to this Blog because in June, 2015, I unexpectedly faced a challenging medical problem and at the time there appeared to be no quick diagnosis in sight.  I knew battling the problem and embarking upon the diagnosis journey was going to be difficult but it has proven to be longer than I expected and the frustration of encountering doctors examining me solipsistically, instead of professionally trying to identify or solve my medical problem, has worn away at my resiliency, compromised my hopeful nature and replaced it with detachment and lassitude.  But with the passage of time comes revelatory perspective and it is that sagacious vantage point which is keeping me sane during this arduous diagnostic ordeal thus far at 6-months and counting.  While writing about my medical problem is physically difficult, I’m hoping my succinct account will be personally therapeutic and also help the many other people going through the exact same situation with un-diagnosed or incorrectly diagnosed medical problems.

What happened to me?

      In short, I fell backwards off the top of a 10-foot ladder in December, 2014, after standing fully erect on its top step and slipping while trying to access a household item for my Mom.  I landed on the cement floor in my garage and the brunt of the fall was absorbed by my upper back, shoulders and neck.  I thought I was certainly going to be paralyzed given my vulnerable falling position and the fright of paraplegia images flashed through my […]

Effective September 15, 2015 I am on Hiatus

Thank you for reading my Blog. I must take a hiatus due to health reasons but I will be back. In the meantime, please check out my Twitter Account @HospitalPatient or my book, "Confessions of a Professional Hospital Patient." Thank you for reading my Blog. I must take a hiatus due to health reasons but I will be back. In the meantime, please check out my Twitter account @HospitalPatient or my book, “Confessions of a Professional Hospital Patient.”

Dear Loyal Readers:

I hope this Blog Entry finds you well.  I apologize in advance, but I must be brief. Due to a complicated medical problem involving a Bone Spur in my Neck which is causing a variety of painful symptoms, I must take a break from typing for a while.  If I require surgery, I might have to take a little more time off.

I will certainly share the most interesting parts of my medical  “journey” as soon as I can. In the meantime, I have been tweeting @HospitalPatient because it’s only 140 characters and I can dictate it.  There’s something about the typing position which aggravates my current Neck situation and causes SEVERE PAIN down both arms and at the tip of BOTH shoulders.  My Pain Management Doctor believes I have 2 separate problems: 1. A Bone Spur in my Neck compressing nerves in 2 different cervical discs on different sides of my Neck and 2. Severely Inflamed “AC Joints” in BOTH SHOULDERS causing the “shoulder separation feeling” pain.

Given the “coincidence” of both shoulders having this “AC Joint” problem at the same time, it seems this problem likely is the result of my December, 2014 fall off a 10-foot ladder.  I fell backwards while standing on the […]

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