Month: September 2017


Dearest readers, I want to say how honored I am to have you along for the journey. The timeframe I describe now was in 2012, during my first debilitating flare. I included this so that anyone reading, who finds themselves in the same scenario, can realize there is nothing wrong with the way you are feeling. I survived – you can too. Things look up, so please stick with me! I wouldn’t be here without you!

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 Alongside the normal pain associated with Colitis and Crohn’s Disease, my medications made my body physically ache a new and persistent, dull pain. The prednisone made my voice quiver and I was told that I might never regain my normal voice. This months’ long flare was wreaking havoc on my health; I lost my job. GI#3 prescribed antibiotics since the mesalamine stopped working. In retrospect, I should’ve moved onto the next GI, however I was still over the moon with having found one who didn’t second-guess me and wasn’t ready to let go. Unfortunately, he was no help during this period and insisted I finish the antibiotics, despite not being able to keep food in my system and more ill than before antibiotics.

The numerous bathroom trips were retching from Crohn’s and Colitis symptoms – immense cramps, immense pain, cold sweats, nausea (the kind where your mouth waters and you must continually swallow to keep it down). I held my breath as a point of focus to get me through the cyclical, torture like episodes.

That moment in time found me on the panhandle in the summer, and I was freezing. I phoned my pharmacist who said that unless I wanted to end up in the ER, I needed to stop the antibiotic. If they were going to work, they would have by then; finally, someone very familiar with medication side effects listened to me, and I listened to her.

Paul recommended Pedialyte since it helped his flares. There went my desperate dad at midnight, in a strange town, in search of Pedialyte for his adult daughter, and it helped. Despite having to sit on a donut to keep my bum pain a bit tolerable, I was able to not fear the open road as much and we pointed home. I fired GI #3 and made an appointment with GI #4. I did the math, the medication side effects were just as bad as the symptoms, and did not relieve the flares; these events cemented my sentence of being housebound. All I had worked so hard for meant nothing as I watched my independence, quality of life, friendships, dreams, and career path trickle away into oblivion.

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Two Uncommon Mycobacteria Sources You Should Know About

Mycobacteria are nasty little pathogens, commonly water borne, which create a host of related illnesses including Mycobacterium Abscessus; this devastating, hearty organism is quite drug resistant and patients usually undergo IV therapy for eradication. While there are various transmission routes of Mycobacterium abscessus, one route has been linked to two separate dental offices, one in GA, one in CA; both affected a small percentage of pediatric patients. The transmission origin was water lines – the hoses used to rinse teeth and perhaps the water used in the hoses; all of the children who became infected in GA and CA were exposed while undergoing pulpotomies or baby root canals and had to be hospitalized; a portion of those had to have surgeries to remove infected tissue, including teeth and in one severe case, a portion of jawbone. Travesty!

Mycobacterium abscessus, like other water borne mycobacteria, thrive in water sources. If you recall my earlier mention of biofilm within the human body, then you know that mycobacteria colonize in this thick, sticky, hard to penetrate material. Dental offices are encouraged to sanitize their water lines with concise methods, following a frequent schedule.  For peace of mind, you could ask your dentist if their office uses chair side testing kits regularly to test for mycobacteria, if they follow the manufacturer’s guidelines for cleansing their dental units and/or if they have their water tested often. While infection from Mycobacterium abscessus seems less common in most dental offices, think of the effects that small percentage could have on children and adults with a genetic predisposition towards mycobacteria infection. My goal is not to scare you, but rather to make you aware of some of the sources of contamination to keep our children and us safe.

Another uncommon source of infectious, water borne bacteria is mycobacterium marinum, commonly referred to as fish tuberculosis. It has been suggested that Fish TB is not actually TB, rather the name is used due to its close bacterial relation to mycobacterium tuberculosis or human TB. Mycobacterium marinum causes skin infections when transferred to humans, through fresh and saltwater aquarium contact and ponds. Antibiotic treatment is recommended for humans and has been suggested to be ineffective in treating sick fish because once fish begin to show signs of abnormality, the disease has progressed past the stage of treating successfully. Transmission to humans is made through scrapes or open wounds on hands or fingers. If in contact with aquariums or ponds, perhaps wearing gloves which, at a minimum reach the elbows and using common sense caution may limit transmission from these sources, however these precautions are not guaranteed. From what I’ve researched, the risk of infection for humans is relatively small; it is relevant here though because those of us infected with MAP need to know this information in order to keep ourselves protected from other forms of mycobacterial related illnesses.


Mycobacterium abscessus

Mycobacterium marinum

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Booster Seat

 As I sit pondering what to write next, I wonder, how deep do I intend to go introspectively? How much will this aid other’s with their struggles, or if nothing else, for a bit of comic relief? I cannot answer for anyone else, only myself, thus, the story continues.

Among a sea of restrictions, which anyone with IBS relates, the first few are the struggles to maintain a mapped out, laminated, updated directory of close circuit, easily accessible, clean bathrooms plus a supply of stretchy clothes kept in the car. Those treasure hunts are unpredictable. Too many times, I’ve had to ask the person I’m riding with to pull over immediately, then will myself to make it through a store entrance, locate an employee and ask where the bathroom was, while clenching. This gets old, not to mention embarrassing, not to mention the pain associated with such occurrences, followed by the age old question, why do I bother? Sometimes, it’s just easier on everyone to stay home, to shy from navigating the crowds both on foot and traffic; this basically translates into being chained to your abode.

I recall one road trip with my parents, my dad had been navigating between the interstate and sparsely placed bathrooms in little known interstate towns all day, and deserved a medal for his patience. The need came, my dad quickly exited (thank God for that close exit), we pulled into a gas station, my booster seat catapulted me out of the door as the car was still moving, desperate. Another such incident, my friend exited the interstate, we found a clean looking establishment but it was on the other side of the road. We did a u turn, as we sat in rush hour traffic, the bathroom looming in too far of a distance, I knew I had to act fast. Out I pop, out of the car, running awkwardly up the sidewalk, wearing a peculiar look of distinction, past two rows of traffic jammed cars, finally reaching the oasis in the desert – the driveway leading into a fast food joint. Those employees must’ve seen my kind before, for they did not offer any sort of “hello, welcome to…”, instead they looked in my direction, then instinctively towards the direction of the facilities. Apparently, my tribe had been there many times before, having paved a well-trodden path wearing stricken expressions. Gravitational pulls affect multiple systems. At times I expected hieroglyphs etched into the stalls, tales of woe and entrapment, clutched to the bosoms of my people as they gathered in their interstate caves.

GI #3 prescribed a massive medication regimen of aminosalicylates and corticosteroids, explaining that I would “be healed” within one year. There is no way to gauge a person’s response time to medication, that one year was false hope. I was led to believe that my Crohn’s Colitis was a problem, but not a big deal, something completely usual, “manageable”; so adopting that lackadaisical mindset I did not take the diseases seriously. Being the gifted in denial human I am, I continued to work full time, going about my daily activities like I had never been diagnosed with this monster. I would love to pen that time heals, however, time proved to be a foe, with improved symptoms, which switched to worsening symptoms, which became unmanageable. As I later learned, mesalamine is of little use in treating Crohn’s Disease…

Imagine waking one day, realizing you have somehow floated down to rest on the floor of a body of water; the pressure of the deep and the cold darkness from lack of sunshine slowly creep in – you’ve no idea how you got there. What’s more scary is innately knowing this resting place will be your home, your final destination as it laboriously yet expertly chokes the life from you. The more you struggle to free yourself, the more you become entangled and wrapped into the black grasps of chronic illness, of which there is no stopping – the more you fight the deeper you sink. Living with Ulcerative Colitis, Crohn’s Disease, chronic illness and other life threatening conditions is like living in quicksand, you never know how quickly or deeply you will slip from day to day. You never know if someone will miraculously be able to throw you a lifeline. Your life, at this point, becomes a gamble.

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Lights, Camera, Action

 As frustration mounted (I was tired of being sick and tired), I arrived at the new GI’s, feeling hopeful that this “seasoned” GI would listen to me, document that I had a family history of GI blues (dad had Ulcerative Colitis) and ready me for invasive testing. I was ready to excavate the issue and deal, by then the fissure was growing worse, weight falling off, cramps and weakness/brain fog setting in from lack of nourishment. It’s a blessing I had graduated college by then!

GI #2 was jovial, made me feel at ease with his “behind” jokes and we developed a rapport. At first, I felt confident with the validity of the online ratings; the doctor sat down with me, jotted notes, asked questions and helped me feel less desperate. After a long discussion about my symptoms, I asked him to perform a colonoscopy, I was going for the big guns, my water pistol was empty and I had nothing to lose. With chagrin, I realized that this sheriff was pouring from an empty well. He downright refused to perform a colonoscopy, his years of wisdom told me that I was “too young” to have a colonoscopy or any GI related issues. I was 35.

GI #2 went so far as to sit me down in front of a T.V. to watch a video (yes, it was a VHS, horrors) of what happens during a colonoscopy, instructing me that upon completion of this baseless nugget of a persuasion tactic, I would not pursue this nonsensical test any further. Why I didn’t run out the door at that point carrying my parched pistol and an arm full of luxe exam gowns is beyond me. I sat. I watched. I wasted more precious time in this diabolical extrapolation.

As the video concluded, the lights darkened and the Rocky theme played softly in the distance (or was that Dueling Banjo’s)? With a lit stage, GI#2 waltzed into the room, as if on queue, quite chuffed with himself, smiling from ear to ear with apparent self-validation, not asking, but reassuring himself, I mean me, that no, I did not want this life saving procedure. I mean, who wants to help themselves these days anyway? I left his display, called Paul, who, being from Buffalo, had a creative way of expressing himself at this latest superstar solo parade. I fired that GI.

They say the third time is the charm. GI#3 appeared on the scene (minus show tunes, I half expected us to join hands for a sing along with prompts). Before we proceeded with show and tell, I told this GI that he either needed to perform a colonoscopy on me, or I was walking. I did not need to waste my time or his. At that point, I survived on Ensure and Muscle Milk. Had someone attempted a commercial about me – combining and proclaiming both drink products, I’m not sure where they would’ve begun.

G3 did an exam, asked lots of questions and the next week I was in his office, hunkered on one side, surrounded by scrubbed, smiling staff, about to have “a light run up my tail”. That is a borrowed quote for another time. That portion of my anatomy apparently reached stardom, as it was the first of many subsequent gazing’s; I always wonder if the GI directs such adventures with “lights, camera, action.”

G3 clued me into the widely known among the GI community, knowledge of what a fissure represents. Apparently, my appearance, symptoms, family history and the fissure made an impact on this caring, educated GI who did more than test well in school. I was diagnosed with not only Colitis, but it’s mean cousin, Crohn’s Disease. A double whammy. I was a lucky girl.

Needless to say, I could’ve passed while waiting for the first two physicians to figure out what they should’ve recognized first attempt, and perhaps did. I had a good insurance plan at that time and you can figure out the rest.

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If At First You Don’t Succeed

It was an early Spring day; for the first time in a few years I was having a good day, having regained use of my back, from months of physical therapy for 6 simultaneous disc bulges (I tumbled down a mountain side in Tibet while searching for Yeti) (JK). I had almost completed my voyage of putting myself through college; the last six months entailed a back brace and mostly standing in the back of the classroom. At times the pain was so bad that I had to double over just to find a bit of relief. I was in no way a social butterfly during those years, which I now regret. That time in life could’ve been enjoyed with my classmates, non-traditional students with fulltime jobs, families and massive responsibilities. We were in this together, we all had a unique story, viable struggles, yet knew that a B.A. was paramount towards our futures, either personal or professional. Having spent the last two years of night classes with each other, within two months, we would walk across the stage during our commencement ceremony, signifying our academic achievements. I crammed four years into 17 and graduated Magna Cum Laude; this sought after momentous day had been a long time coming.

Within a few months of graduating, I began having stomach issues, literally overnight; I recall sitting at work, overlooking part of an old equestrian town, having hosted our team of realtor’s and city council members as guest speakers, for our monthly meeting. There were left over sandwiches, I was hungry so I helped myself to one half. Within five minutes I had to run to the bathroom, hence my symptoms began. I knew that sudden lack of rest and digest was not something to ignore. Bewildered is the best adjective to use as I pondered these sudden GI changes.

At the prompting of my parents and close friend, Paul, a former Ulcerative Colitis patient, I made an appointment with a GI. My symptoms matched those Paul experienced during flares, so I knew I had to go straight to the top. About two weeks after symptoms began, I found myself in the office of a GI in what formerly was a reputable practice. At this point, I was losing weight, hair, could keep nothing in my system for more than a few minutes, and had an “ache back there”.

GI #1 examined me, and after taking a call on her cell, diagnosed me with having a virus, a fissure and to return in one month. Simple, except for the fact that I was pale and exhausted; my body was fiercely waving the white flag. I sat in her circus, I mean exam room (complete with catch netting and a ring of fire), staring at her, wondering if she even considered my symptoms. Wearing a thin exam room gown, in a very fetching shade of light blue, I once again stated the above, assuring her that I could eat zero. She looked surprisingly perplexed that I questioned her valiant expertise, and repeated her earlier elementary conclusion. To this day, I’m convinced that somewhere a statue for academia merits alone has been erected in her honor.

Depending on where you are in your care, you know that a fissure is not caused by a virus, but rather is “indicative of bowel disease,” as I was told later by GI#3. I fired the intro GI; out of desperation and survival I booked an appointment with GI #2, who received rave reviews online. Note to self, do not believe everything you read. Question it all. If you book an appointment with a GI and they can see you “right away”, run – the other way.

As you can tell, my diagnosis of Colitis Crohn’s Disease came at the most opportune time in my life; I lived in the suburbs of an overgrown, bustling city that never sleeps, with my fur baby; I was office manager of a real estate agency and felt like I had the world on a string…my age of diagnosis was later than some, earlier than others. How thankful I am that I travelled the world partaking of and enjoying life prior to becoming chronically ill.

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MAP – The Deep End

I prefaced this blog with MAP, now we delve deeper into this centuries old hellacious bacterium. This post is more involved than the previous, you may want to come into this read bearing popcorn and a bean bag chair.

I have MAP (mycobacterium avium subspecies paratuberculosis) – an infectious bacterial disease found in increasing numbers of UC/CD patients and treated long term with antibiotics for eradication from humans. Let me reiterate, MAP is one cause of UC/CD. There is no way to tell if MAP caused my Crohn’s Colitis, but I believe it did. My exposure is difficult to pinpoint as exposure areas are widening and include water supplies, meat (not just beef), and dairy, for starters.

Humans either have a pre-disposed genetic susceptibility to this bacteria, or not; those who are pre-disposed are more likely to develop UC/CD, but not always. This genetic defect makes the MAP organism invisible (unless it is reproducing) to white blood cells (cells of the immune system), leaving them vulnerable to invasion. Not everyone with UC/CD tests positive for MAP. Anyone can be exposed to MAP, however years of research have proven that not everyone becomes infected with this bacteria: it’s not in their DNA to become infected because their immune systems recognize and destroy the organism. Some have argued that dysbiosis (gut flora imbalance) can make the immune system susceptible to invading organisms. Again, adapting, evolving MAP generally does not infect those without a pre-disposition to developing disease from MAP, yet.

Long-term anti-biotic treatment is necessary as MAP lives within the blood stream and hides in white blood cells (WBC), to name a few. Remember that MAP is undetectable to WBC, unless it remains in the bloodstream long enough to produce and surround itself with biofilm, at which time it can reproduce; this biofilm production is recognized by WBC, signaling them towards MAP, triggering the inflammation process.

How strange that WBC can detect the biofilm of an organism within their territory, yet cannot detect the same organism once its within their own cell wall – this is how MAP wreaks havoc on our immune system; coincidentally we are all told that UC/CD is a disease process of the immune system. In actuality, our immune system is invoking its working response to this foreign invader, doing its job to knock out this bacterium, by making us sick; however, when it comes to MAP, our immune systems cannot fight alone. This medical breakthrough was recognized for years, until the 1930’s and standard protocol was to treat UC/CD as an infectious bacterial disease.

Mainstream medical are heavy proponents of biologics to suppress the immune system and keep our symptoms manageable, not cured. While these regimens have helped me and countless others short term, consider the bigger picture of low immunosurveillance; instead of supporting our immune systems in carrying out their designed purposes, we are suppressing the very means by which our bodies expel foreign invaders. Why? Because in the 1960’s, immunology, or the autoimmune theory of treating immune responses as the main cause for UC/CD, became standard teaching for mainstream medical students and continues to this day. Most students are taught to categorize UC/CD as an auto immune response and to treat that innate response by lowering the immune system’s ability to fight off infection. In other words current medical students are taught that the body is attacking its own tissue by way of overactive immune response. Quite simply, most medical students are not familiar with MAP, certainly not viewing UC/CD as a bacterial infection – because it was not within the scope of their education; this important factor is where patient advocacy comes into view. It’s up to you to either locate a qualified GI who recognizes MAP or take conclusive literature to your current GI for referral.

My own disease process has been like others; we’re either in remission or in a flare. Dr. Shafran explained to me that “MAP is like a stealth bomber, you never know when it will hit or remain quiet.” The reason MAP positive patients can present with less symptoms is because their MAP infection is hidden deep within the bowel, hence the stealth mode; patients with severe symptoms have MAP that is more surface level. MAP does not necessarily lay dormant. A flare does not always mean MAP is active, as there are many variables to UC/CD symptoms, such as consuming a known trigger food or taking ibuprofen (these are two of my triggers, may not be yours). As I’ve learned the hard way, these flares don’t disappear as quickly as they appear, heavy medication is needed to make them less an issue, hence heavy immunosuppressant use. The tides are turning here! Targeted anti-biotic therapy is once again being recognized as a scientifically proven, well validated method to reduce flares and gain remission, long term!

While MAP may not be the sole reason someone develops UC/CD, there is plenty of evidence to suggest it is. In the past the only testing procedure for MAP involved culturing tissue samples from Crohn’s patients, which equated a much longer process for detection. Today a revolutionary blood test has been skillfully developed to determine presence. John Aitken, a microbiologist with extensive background in medical microbiology and a sincere passion to help humanity through research and education, developed this test.

I’ve read studies about the high prevalence of MAP in UC/CD patients and met a former UC patient who was successfully treated for MAP after testing positive, and who has not had symptoms of UC for almost two decades. Two decades! That is a long time to be symptom free. On the contrary, I know a CD patient who has never tested positive for MAP.

I highly encourage you to have yourself tested for MAP. You can easily have your labs drawn independently and sent via Fed Ex to this lab Otakaro Pathways and once results are released (30 days), you can decide how to proceed with your treatment. Mr. Aitken’s test is able to detect even MAP in stealth mode by a process which triggers response, much like waking the bacteria from a deep sleep. Amazing!

My GI at the time I was informed about MAP refused to test me, which was a good thing as I was recommended to Dr. Shafran, a world-renowned MAP expert with vast, superior knowledge regarding UC/CD, causes, treatments. Dr. Shafran conducts his own studies regarding the many intricacies of MAP. The discoveries and impacts Dr. Shafran, Mr. Aitken and their colleagues have made are ground breaking and life changing. Be encouraged, you have options – if MAP has thrown you into the deep end, butterfly out! You owe it to yourself to get better, not just feel better.

References Cited:
MAP in Water Supplies
MAP in Dairy
MAP in Dairy UK

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The Reason for My Crusade

I’ll preface this maiden entry with the foremost reason for my blog – to educate about one cause of Crohn’s Disease and Ulcerative Colitis, a pathogen classified as Mycobacterium Avium subspecies Paratuberculosis – (MAP) (see link below). There is a plethora of info regarding MAP and how its transmission can cause Ulcerative Colitis and Crohn’s Disease, of which I am currently researching and digesting. I plan to write more on this adaptive bacteria and how it manifests into Colitis and/or Crohn’s Disease plus other diseases. I hope that you find this fact as exciting as I do – an actual, repeatedly documented, scientifically proven cause!

I have Crohn’s Colitis and I have MAP. Let me reiterate, MAP is one cause of UC/CD. There is no way to tell if MAP caused my Crohn’s Colitis, but I believe it did.

Like most of you suffering from these conditions, I was told that there were no known causes for Crohn’s Colitis other than the generic textbook answers of overactive immune system or dysbiosis (gut flora imbalance). There are.

Locating the most qualified, open-minded specialist is key to beginning your own journey towards wellness. As I begin to write my journey with Colitis and Crohn’s, I am filled with a mixture of hopeful trepidation, knowing how encompassing a blog about a personal struggle can be, if I’m honest with you, and myself. Here goes!

What is Map?

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The Odyssey Begins

    Overwhelming emotions are evoked from learning there are actual, documented causes of Ulcerative Colitis and Crohn’s Disease, far from the generic explanation of “overactive immune system!” Locating the most qualified, open-minded specialist is key to beginning your own journey towards wellness. My GI, Dr. Ira Shafran, who tested and is treating me for MAP (Mycobacterium avium subsp. paratuberculosis) is an authority in his profession for diagnosis and treatment options for MAP related Crohn’s and Colitis; Dr. Shafran has successfully treated adult patients for MAP since 1996 and has completed his own investigative studies of MAP exposure.

Microbiologist and pioneer John Aitken, with over 40 years experience, has passionately yet painstakingly developed the first blood testing method for MAP; he cultured and incubated my cells to determine the presence of this infectious bacteria. You can order your own test via Otakaro Pathways (link below)! Both of these men are true patient advocates – staunch trailblazers in their respective fields, whose hearts and actions are the embodiment of thinking outside of the box! Their contributions to the UC/CD community are genuine, realistic reasons to rejoice! For now, please carefully consider what I’ve written for your own possible treatment and peace of mind, and know there is much more info that I shall share with you.

As I transit the memories pathway on which are recorded the previous six years of my Colitis Crohn’s Disease existence, I am humbled at the journey. I choose not to tell most people in my life about this condition because it will not define me. My undeniably “the most wonderful parents” since the dawn of man have been there for me like no others, words cannot describe all they imbue for myself, my brothers, my sister in laws, my nieces and nephews and my pooch, the grand dog. I am abundantly blessed with my family.

The remarkable odyssey around, over and under my road carved with splits, deficits and simultaneous bumpy rises will, I pray, help someone else in its telling. The splits are the physical manifestations of chronic or life-threatening illness; the deficits are sourced heartache all people experience. The bumpy additions are similar to what some identify as a weed and others view as the beautiful temptress of a bright, vivid yellow dandelion, daring to fight her way through, and defiantly stand tall, despite being buried beneath layers of thick, sticky, hot, hardening material. Sometimes searching for a crack in the surface whether below or above is the only way to survive. My attempt to convey my story to you is marked with humbleness as I open the windows of my soul to a myriad of strangers, as well as friends and family who know little of my struggle.

My days at best are cloud filled, some rainy, some stormy, others brimming with sunshine, but usually with flecks of morose. Feeling akin to a spectator at the theatre of my own life, I present to you a heartfelt and oft times melancholic history of this lone soul during my walk about. Here, at long last, I offer to you my story of Colitis and Crohn’s Disease. With God’s help, the spotlight will eventually turn from me to Him, and where all of this fits into His plan for my life.

Otakaro Pathways
Shafran Gastroenterology

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