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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.