The Patient Perspective-Michael A. Weiss

NEW/FUTURE Crohn’s Disease Treatments

(Please note these “new” and “future” treatments discussed by Dr. Chapman apply to BOTH Crohn’s Disease and Ulcerative Colitis.  Ulcerative Colitis is not listed in the title above simply due to space constraints.  Dr. Mark L. Chapman is the only remaining practicing gastroenterologist who was trained by the late, great Dr. Burrill Bernard Crohn, who in 1932, along with Drs. Leon Ginzburg and Gordon D. Oppenheimer, first identified the disease which eventually bore his name. )

      There are at least over 160 genes involved with the formation and progression of Crohn’s Disease.  Some scientists have identified over 200 of such genes and if that proves true, Crohn’s Disease would involve more genes than any other disease.  But in this March 29, 2016 Video Interview, Dr. Mark L. Chapman of the IBD Center at Mt. Sinai Hospital in New York City discusses the recent breakthroughs in genetics, epigenetics, molecular biology and immunology which are giving rise to new and future, safer and more efficacious, Inflammatory Bowel Disease treatments such as Stem Cell Transplants, JAK Inhibitors, Stelara, Interleukins 12 & 23, Anti-Adhesion Strategies involving ICAM-1 or MadCAM1, IL-23 inhibiting drugs, Fecal Transplants and even Medicinal Marijuana.

     (The Video starts with Dr. Chapman answering a very specific, but important Viewer Question from a woman with a complex Crohn’s Disease case who wonders about her ability to take the Biologic drug Entyvio after she had contracted the fungal infection “Histoplasmosis” while taking each of the anti-TNF Biologics.)

Please share your constructive comments below regarding New & Future treatments for Inflammatory Bowel Disease. Thank you.

Patient-centric concerns re: NJ’s Medicinal Marijuana Program

4 of the 8 Medicinal Marijuana Product Strains offered by my dispensary. 1-4 of the 8 Medicinal Marijuana Product Strains offered by my New Jersey dispensary.

Part 3 of 4-part Series chronicling my current experience as a Crohn’s Disease patient participating in New Jersey’s Medicinal Marijuana Program (NJMMP)

Reasonable Need for NJMMP Patient-centric revisions have made this a 4-part Series

      I began this Series detailing the extensive, rather long, often even onerous and inherently expensive NJMMP registration process. In Part 2 I shared my very positive experience interacting with the NJMMP when a representative with the authority to solve my problem was kind enough to phone me in response to an email I had sent only the previous weekend to the general email address listed on the NJMMP website.  Following the suggestions of this very kind NJMMP representative, I resolved my registration problem and was then registered for the NJMMP at the much lower  biennial registration fee of $20.00 (instead of $200.00) in consideration of, and after I provided required proof of, my fixed and limited income from receiving Social Security Disability benefits. I received my NJMMP ID Card shortly thereafter and initially decided to conclude the NJMMP Series in Part 3 after visiting my Alternative Treatment Center (ATC) [a/k/a my dispensary], purchasing Product then medicating with it and sharing my assessment of how effectively it met my medical needs.

      For that purpose, I kept my medical needs simple and only sought the anti-inflammatory benefits from a product high in CBDs and very low in THC ingredients so that medicating did not include feelings of “euphoria” or “being stoned.” Then, after listening intently to my description […]

July 8th, 2016|Categories: anti-inflammatory benefits of CBDs, Cannabinoids, CBD, chrones, chrones disease, Colitis, Coping with Crohns, Crohn's, Crohn's & Colitis Awareness Week, Crohn's Disease, Crohn's Disease Mainstream Awareness, Crohn's Disease Medical Marijuana, Crohn’s Disease Pain, Crohnie, Crohnies, Drug Dependency vs. Addiction, Gastroenterologists, Gastroenterology, Grateful Dead, IBD, IBD & Pain Management, Inflammatory Bowel Disease, Inflammatory Bowel Disease & Medical Marijuana, Medical Cannabis, Medical Marijuana, Medicinal Marijuana, Michael A Weiss, Narcotic Pain Medications, New Jersey Medicinal Marijuana, NJ Medical Marijuana Program, NJMMP, opioids, Pain Management, Pain Management & Crohn’s Disease, Painkillers, Patient-centric, Prescription Painkillers, Severe Crohn's Disease, Sherman Prize, Teenagers with IBD, Tetrahydrocannabinol, THC, The Grateful Dead|Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , |0 Comments

Crohn’s Disease Walt Disney World Make-A-Wish GRANTED!

PLEASE share this wonderful story with every Crohn’s Disease patient or Crohn’s patient family member you know because it is nothing BUT INSPIRING and revealing of the extraordinary resiliency of a 15-years-old girl bravely battling the pervasive and serious medical challenges posed by Crohn’s Disease with the love and support of her family.

Utica, New York local TV station WKTV aired this piece produced by Rachael Murphy (@RMurphyWKTV) about a 15-years-old Utica, NY girl Mia DeFazio who’s been battling Crohn’s Disease for the past six years.  This video segment captures the real-life often extraordinary challenges presented by Crohn’s Disease while it also reveals the strength and character of this resilient 15-year-old as she somehow manages to prevent recurrent hospitalizations for Crohn’s from muting the otherwise joyful experiences of her typical teenage life while she instinctively recognizes the importance of the love and support she receives from her family by including them in her Walt Disney World Make-A-Wish dream come true.

Produced and written by Rachel Murphy for WKTV (Utica, NY)       @RMurphyWKTV

UTICA, N.Y. — A 15-year-old Utica girl, who is battling a life-threatening illness, will have her dreams come true after the Make-A-Wish of Central New York granted her wish to visit Walt Disney World.

Mia DeFazio seems like a typical teenage girl. She likes watching Disney movies, she enjoys painting and she loves the boy band One Direction.

But for the last six years she’s been fighting Crohn’s Disease, a life-threatening chronic inflammatory condition of the gastrointestinal tract that has no known cure.

She’s had several surgeries, been forced to continue schooling at home and it has changed her diet dramatically.

“Last month she was 69 pounds,” said Vanessa DeFazio, Mia’s mom. “She’s 15-years-old, 5’1 and 69 pounds is not that great.”

Her mom wanted to lift Mia’s spirits, so […]

Chronic Pain Opioid Medications stigmatized as causing Addiction

June 23, 2016 – I applaud the persistent efforts of United States Surgeon General Vivek Murthy, MD mobilizing the medical community to address, assess and then fight the current Opioid Epidemic but I am gravely disappointed by the potential implications from the broad-sweeping “Addiction” conclusion he shared with the media yesterday, as depicted above.  More specifically, I fear Surgeon General Dr. Murthy’s “addiction” comments might be interpreted by attention-seeking politicians as his summary assessment of anyone who must take opioid prescription drugs and that inaccurately and unfairly stigmatizes legitimate patients seeking relief for their pain (after trying and failing at all alternative methods such as physical therapy, acupuncture, relaxation techniques, etc.).

      These patients in severe, systemic and/or chronic pain “need” narcotic anodynes to survive in the same way asthma patients “need” certain medication-infusing inhalers to breathe more comfortably.  Moreover, “addiction” is a disease which doesn’t affect every patient taking these pain-relieving drugs.  In fact, it is more accurate to describe legitimate chronic pain patients as becoming “physically dependent” on opioids prescribed by Board-Certified Pain Management Physicians.  In that regard, there is a distinct difference between “addiction” and “physical dependence;” the former a condition of great concern for which these physician pain specialists are carefully trained to recognize and the latter an expected result for a chronic patient.  It is as normal for a chronic pain patient to become physically dependent on opioids as it is for a patient battling for 20+ years with an incurable, pervasive and autoimmune illness like Crohn’s Disease to accrue significant cumulative medical bills from a variety of medical specialties such as from a gastroenterologist, rheumatologist, orthopedist, ophthalmologist, otolaryngologist, oncologist, dentist, oral surgeon, etc.

The Slippery-Slope of only using the word “Addiction” when discussing Prescription Opioids

      […]

New Jersey Medical Marijuana Program – Part 2/3

New Jersey Medical Marijuana ID

The Medical Marijuana Evaluation Doctor Appointment

      As you may recall from the 1st part of this 3-part Series of blog posts documenting the Registration Process for Medical Marijuana in New Jersey, I had found a “Recommending Doctor” and paid $350.00 to meet with him and his staff to be Evaluated.  At that Evaluation Appointment, the doctor listened to me describe all of my Crohn’s Disease issues from gastrointestinal pain to peripheral joint/muscle issues and systemic inflammatory problems like the “Interstitial Lung Disease” I somehow picked up after a few years on the drug “Humira.”  For those with Crohn’s Disease who rely upon Humira for sheer survival, it may be best to think of me as a “cautionary tale” as someone has to get side effects. However, it is possible my lung problems are more directly related to my Crohn’s Disease but the samples from two (2) surgical lung biopsies in 2011 and 2013, respectively, have yet to be identified by pathologists in the United States.  As a result, doctors are never sure what they are treating other than some type of inflammatory lung disease which has caused so much damage to my lungs that I have a fairly significant amount of “necrotic” or dead lung tissue as a result.

      The culprit is perhaps unclear but I am hoping the anti-inflammatory attributes of Cannabis, or the Cannabinoids (CBDs), will at least prevent future flare-ups of SEVERE Shortness of Breath which are so bad that I cannot talk and breathe at the same time.  Whether I am in a flare-up or not, this lung problem also prevents me from breathing normally in any kind of […]

New Jersey Medical Marijuana Mystery Tour

Medical Marijuana is LEGAL in New Jersey for certain conditions including Crohn's Disease & Inflammatory Bowel Disease Medical Marijuana is LEGAL in New Jersey for certain conditions including Crohn’s Disease & Inflammatory Bowel Disease

 

Where does this Medical Marijuana journey start? 

     Besides the high cost of both the Medical Marijuana in New Jersey and having access to the “process” of being able to obtain Medical Marijuana in New Jersey, and none of it eligible for coverage by healthcare insurance, another big problem I’ve encountered thus far is knowing who to see to start the approximate one (1) month to six (6) week process of obtaining Medical Marijuana.  For example, last week I met a fellow New Jersey Crohn’s Disease patient on social media after I posted I was in the process of switching to Medical Marijuana for treatment of my Severe Crohn’s Disease.  This person responded with a comment something to the effect of: “Well, I would love to try Medicinal Marijuana for my Crohn’s Disease, especially since so many people I meet with Crohn’s can’t say enough good things about it, but my gastroenterologist does not recommend it.” 

     My first thought was how cruel and inhumane his gastroenterologist was treating him but I wasn’t sure how that conversation exactly took place.  Did he ask the gastroenterologist for a Medical Marijuana “prescription” and the doctor rejected the concept of using Medical Marijuana for Crohn’s Disease or did the gastroenterologist simply state the fact that he doesn’t “recommend,” or is not permitted to “prescribe,” Medical Marijuana?  In either case, the doctor seems like an arrogant know-it-all who clearly doesn’t care what his patients have to say because he […]

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