CCFA escapethestall Oct 17 2014

Typical Crohn’s Disease Flare-up w/ PAINFUL Sacroiliitis & Mouth and Eye Sores

I couldn’t sleep last night because my body is still coming down from the massive amounts of steroids it took last week to quiet my recent bout with Crohn’s Disease, an incurable, chronic,  autoimmune Inflammatory Bowel Disease, which simultaneously triggered, what for me, is a typical non-bowel related effect of my 30 years of Crohn’s Disease flare-ups, namely, incredibly painful episodes of Sacroiliitis during which the uncontrollable inflammation infiltrates my Sacroiliac Joint in my lower back and any bodily movement causes me such severe pain that I yearn for Michael Jackson’s personal physician to prescribe his special sleeping medication so I could rest without constantly moaning and groaning.

For those of you unfamiliar with the sensation of a severe Crohn’s Disease flare-up which does not involve an intestinal obstruction, which, incidentally is probably the most pain a human being can tolerate without passing out from an inability to ride the tides of the increasingly intense cramping cycles which threaten to perforate your intestine, I can only describe it as feeling like sharp razor blades embedded in your small bowel which make you feel their every movement they’re cutting into the sides of your bowel each time you merely “digest” some sustainable liquid like Gatorade.  It’s startling when it first happens because you logically deduce that some major bodily organ is terribly failing you but you know as soon as you get to an Emergency Room, all will be fine.  That is, until you arrive and quickly learn that IBD is just as much a nightmare for doctors and nurses as it is for patients.  Even when the most compassionate and well-intentioned doctors and nurses try to proactively treat your IBD to avoid such severe and unpredictable episodes, the side effects from those long-range medications can actually cause MORE physical, emotional and financial devastation THAN THE Crohn’s Disease or Ulcerative Colitis itself.  Throw in the accompanying unpredictable autoimmune-induced Sacroiliitis and the nasty and painful mouth sores which can also sometimes occur in your eyes, and the journey in and out of a bathroom stall is the least of your worries.

But here comes the Crohn’s & Colitis Foundation of America (CCFA) to the rescue with an “Escape the Stall” TV Campaign with the lovely and talented Amy Brenneman

Yet tonight I saw a mainstream television commercial made by the usually WONDERFUL Crohn’s & Colitis Foundation of America (CCFA) about how Inflammatory Bowel Disease can happen to anyone “you know” so you should “Please help them ‘Escape the Stall.’”  I imagine some would say any attempt at raising awareness of the deleterious effects of IBD, Crohn’s Disease and Ulcerative Colitis is a positive step in the right direction toward being recognized as a major problem for many people which warrants support.  This is especially apparent when the commercial ends with the brave Ulcerative Colitis patent, survivor, actress, writer and producer, Amy Brenneman, lending her immense credibility to the cause.  But Ms. Brenneman’s classy contributions aside, that’s like saying “any promotion on national television is good promotion” and when competing against so many other worthy healthcare causes such short-sighted thinking defeats the underlying well-intended purpose of the “Escape the Stall” campaign.

“Escape the Stall” is an INSULT to those w/ Severe Crohn’s & Colitis & could set back our legitimacy as a worthy Cause for YEARS

I fear associating a credo like, “Escape the Stall” with Inflammatory Bowel Diseases such as Crohn’s Disease and Ulcerative Colitis simply plays to the lowest common denominator of people who unfairly stigmatize these often incredibly painful, debilitating, disabling, expensive, incurable and autoimmune diseases as nothing more than inconvenient and unpredictable bowel disorders whose primary effect is unwanted time spent in public bathrooms.  Accordingly, how are we to compete for Supportive and Research Donations with worthy causes for so many other Rare Diseases and the different Cancers when arguably the most important organization in the history of Inflammatory Bowel Disease seemingly trivializes the often horrifically devastating effects of Crohn’s and Ulcerative Colitis?

The often Harsh Realities of Inflammatory Bowel Disease

Most people around the world do not have ANY IDEA about the lonely and painful plight of the IBD patient who routinely gets denied Social Security Disability Benefits in the US despite being deemed systemically ravaged and disabled by the most qualified of doctors after years of battling IBD or those suffering from incurable side effects of the Biologics they had to take just to stop the bowel surgeries and repeated hospitalizations or those who must see Pain Management Physicians month-in, month-out, just to “survive” while even some of their own family members start doubting the disabling effects of the “Invisible Illness” they fight because their spirit gets broken from having to cope with a disease the severity of which, so few truly understand.  With all that on the line, how the CCFA could chose an Awareness Television Campaign with a GREAT spokesperson like Amy Brenneman based on such superficial aspects of the disease is counter-intuitive and an INSULT to the patients with Severe Crohn’s Disease and Ulcerative Colitis who need the support and research advancements NOW.

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