Month: May 2018

Waterfall

To be given hope renders a fountain. To cautiously believe that my reset button can be pressed evokes a cascade of reactions; from disbelief to what do I do now? Where do I begin? What do I want to do with the rest of my life? I suddenly have choices and may no longer be relegated to a few specific things that won’t cause stress or aggravate a volatile disease process (if such exists).

These hints of what could be, while still settling in, are much like viewing the world from behind the curtain of a waterfall – at the back are familiar, slippery stonewalls, where comfort in a reclusive form has been my norm for years, simply due to inexhaustible symptoms plus being told this is the best it will be for you – your life will never be the same. Don’t exert yourself, avoid stress (like that’s possible), those repeated words and endless exhaustion eroded all my plans and dreams of living life as the gush of the unknown washed over and engulfed me.

However, I am meant to share my story – more importantly, to educate those affected by Ulcerative Colitis/Crohn’s Disease and give you a dose of reality. You too can find answers – you do not have to settle anymore!

Although I am not out of the woods with my treatment or symptoms, I will say that the mere act of penning my journey has been cathartic; a hypnotic solitude in knowing I can reach others with positive news and champion our cause since, for the first time in history, patients have a voice.

Recovering from 2012-13 flare – prednisone face!

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Astoundingly Simple 2

Our immune systems do mount an attack on its own tissue, this inflammatory response is what causes flares, and that out of control spiral we face; the difference however not as simple. These attacks are our body’s attempts to rid foreign pathogens, ones that can go undetected, due to genetic immune deficiency. These organisms create biofilm as a protective layer, thus inflammation occurs in the surrounding tissue. Our bodies know a menace has invaded, yet can’t access it due to genetic immune deficiency of not knowing how to identify or destroy it.

When you think about it, our bodies are doing what they are supposed to, which means they are acting correctly, this is how they were created. They are trying to destroy what is making their host sick and instead of suppressing this reaction with medication (biologics), we should align by way of antibiotics and give our bodies what they need to fight the real enemy, bacteria/fungi. As you’ve read in previous posts, one of these bacterial pathogens is Mycobacterium Avium subsp. Paratuberculosis (MAP) and I believe it either caused or contributed to my developing Crohn’s and Colitis. I was exposed to this pathogen through tainted water, tainted dairy or tainted meat; remember, though, not everyone exposed to foreign pathogens develops IBD.

Medical students traditionally are taught that IBD is the result of an overactive autoimmune system response, not a genetic immune deficiency; I’m sure this is not news to most patients of such. This novel approach of bacterial infection, is in fact, nothing new, and was widely taught and believed to be the cause of gut related illnesses. The tide turned in the 1960’s when immunology became the norm as the medical community embraced autoimmune disease as the cause of IBD and other ailments. I will say this, what you decide to put into your body is up to you; biologic’s vastly improved my health and wellbeing for the times they were effective. However, these agents have a life cycle.

If you decide to question what you are feeding yourself or why side effects are becoming questionable, you can begin your own voyage of self-discovery. If you are happy with where you are in your treatment, good for you. I am not trying to persuade you to stop your current treatment; my goal is to educate and share where I am in my journey, both personally and medically. To each their own!

MAP Causes CD In Some IBD Patients
New Research Offers Clues into CD Cause
Cure Crohn’s Disease

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Astoundingly Simple 1

I am under the care of GI#7, aka Magnificent 7 or M7; to convey that I have the echoing’s of life without Colitis/Crohn’s Disease makes me wish to stand on a lushly green mountain top and shout to the world of my miracle! While M7 has not promised such deliverance, mounting evidence proves it is possible for long-term remission minus medications in some cases. Such a plethora of info to share at this latest junction! However, I must first complete my story thus.

When one ceases to try and control their life/health, that becomes the moment of acceptance which imbues a labyrinth of recovery. Sometimes, when we least expect, God presses our reset button. He is a good, good Father. Cautious optimism is allowed to seep in, a miniscule amount at a time. Life without Ulcerative Colitis/Crohn’s Disease, chronic or life threatening illnesses, or at least a life minus horrible medications is something we’ve been told was not possible. Lest we believe?

It’s curious how teachers come into our lives; this is twofold of my journey towards recovery. My friend Boyd and I were discussing life one day; he’s one of the few I chose to reveal Colitis/Crohn’s Disease. He’s given witty guidance and has been there during my treks from GI #’s 5 – present. During one such conversation, he challenged me to not accept the establishment answers and prognosis about these autoimmune diseases, bacterial infections, but to dig deeper and find alternatives to my care, other schools of thought if you will.

You see, while my symptoms were somewhat controlled, I was still sick and I displayed long-term textbook reactions to the biologics. I was desperate and I needed help. During this trek, I was educated to the fact that Ulcerative Colitis/Crohn’s Disease can be caused by fungi and/or bacteria, which may thrive in a genetically immune deficient host – not solely a result of the much-touted over active immune system theory. Sounds astoundingly simple, right?

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