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Wednesday, January 15, 2014

CROHN'S COLITIS CELIAC DISEASE : ULCERATIVE COLITIS - MY STORY PART ONE

HI. I AM NOT A DOCTOR. THIS BLOG IS SIMPLY MY STORY, MY OPINIONS, AND MY OBSERVATIONS. I'VE DONE MY OWN SEARCHES FOR INFORMATION AND COME TO MY OWN CONCLUSIONS. NOTHING IN THIS BLOG IS INTENDED TO DIAGNOSE, TREAT OR PRETEND TO CURE ANYTHING. SUPPLEMENTS AND SOME FOODS CAN AND WILL INTERFERE WITH YOUR MEDICAL TREATMENT AND MAKE THINGS WORSE.ALWAYS CONSULT WITH YOUR DOCTOR. FINISH IN THEIR ENTIRETY, ALL THE MEDICINE YOUR DOCTOR PRESCRIBES.  DISCONTINUE YOUR MEDICATION ONLY WITH YOUR DOCTOR'S PERMISSION, AND ALWAYS TALK TO YOUR DOCTOR BEFORE YOU TRY OR DO ANYTHING NEW IN THE CONTEXT OF YOUR UNIQUE HEALTH SITUATION.

THIS IS MY STORY: PART I.

In 1980, I had a total immune system collapse.  I was diagnosed with an INFLAMMATORY BOWEL DISEASE(IBD)called ULCERATIVE COLITIS (UC).  I had no idea what that was, had never heard of that disease and was confused over what had happened to me.  It came on so suddenly.  It's not like I had a history of intestinal problems.  On the contrary, I was active, engaged with life, a school teacher with a bright future and married 5 years to my high school sweetheart.  And then all of a sudden I was seriously ill.

I didn't know what hit me.  Those of you reading this know the symptoms only too well.  They are horrifically painful.  Every bleeding, rectal cramp drained my energy to where all I could do was cry until my tears wemt dry.  I was prey to my body as it appeared to be attacking itself.

(Children, turn away for a moment...)

I have to tell you, though, I was feeling so much dis-ease, I was willing to do anything to feel better. The bowel movements - did I say they were painful? -They are exquisitely, excruciatingly, blindingly, painful. I didn't just see stars, I saw new constellations that haven't been discovered yet. Oh, did I forget something? Oh, yeah, I've left out the explosive bloody splatter in the bowl. Tarrantino would look away from that scene, I swear it was that bad. And, after many, many minutes (feeling more like hours, months, & years) of cramping, enough to put a red ring around my exhausted, crying derriere, I'd pop out a stool the size of the tip of my pinky. And all from my new seat, my new window to the floor of the world: my toilet. Like nothing you've ever experienced before, unless you've experienced it before. And then you know only too well. I have felt this pain.

I needed a doctor.

Back in 1980, the internet was a distant future dream. I relied, as a patient should, on my doctor and pharmacist for the information there was. I trusted my doctor to treat and to cure me. It's the way I was brought up and taught to think about doctors. They are our healers.

My thought at that time was that my symptoms came on so suddenly, there had to be a trigger or maybe a mosaic of triggers, affecting me.
Homeopathy, naturopathy, whole food nutrition, acupuncture and yoga were terms I wasn't even familiar with. Food allergy diagnosis was confined to an allergist's office and a series of shots.

No, thank you very much.

So, my doctor, my proctologist/gastroenterologist, my ass doctor, the expert at all things rectal, had little else to offer except to follow his prescription. Which I did faithfully, as should any patient, by taking the medication prescribed for this disease. In my case, my prescription was for a drug called Sulfasalazine (U.S. brand name: Azulfidine; Europe and Hong Kong brand names: Salazopyrin and Sulazine.) This drug was developed in the 1950's for the treatment of rheumatoid arthritis.

When the symptoms first hit me with their full vengeance - as this was no gradual breakdown - I went to the doctor, a prominent proctologist in my area. Proctologists are the ass doctors. They examine rectums all day long. That didn't seem to comfort me. Consulting with my doctor after the examination, diagnosis and prescription, I asked my doctor what caused my condition.

The same answer, common today, exited his lips, "We don't really know." I was advised to consider cutting back on red meat and dairy. And to take my medication.

Absolutely brutal.






I didn't want to eat ANYTHING because I wanted to put off having that dreaded intensely personal experience as long as I could. I SO hated the feeling. I felt powerless. Food just turned me off because I knew the pain of elimination was the end result (pun intended). I felt as though someone had taken a steelwool bottle brush to my intestines. Everything was on fire. I was miserable. It wasn't punny back then.

After the doctor's diagnosis, I started taking my prescription, Azulfidine, and sought out a nutritionist who prescribed a diet that was cooked, steamed or prepared in such a way that it was soft and easy to digest. Almost like baby food, which might be a good choice today because they've improved the taste and much is now organic. Today, if I was suffering, I would definitely look into baby food. Also, no red meat. No dairy. No alcohol. No caffeine. No soda. You know, none of the good processed stuff I loved to eat.

To replace the protein I was no longer getting from red meat, I tried adding soy based items like tofu to my diet.  I learned pretty quickly soy was an exacerbator of mine. Hence, all soy and tofu products were eliminated from my diet.  Small pieces of fish and chicken combined with rice were good.  It was a slow, grueling process.  The softer, easier to digest meals did make things easier.  Along with taking my doctor's prescription, I began to feel better.

11 months later, with the help of the medication (which, by the way, turned all of my bodily fluids orange) the symptoms had subsided and my doctor took me off the medication. Other than the orange part, the medication agreed with me and I didn't have any other noticeable side effects.

1981 began well. For about three months.

I was feeling better and, of course, I went back to some of my old ways...a cheeseburger and fries washed down with a large diet soda. Yum! I LOVE LOVE LOVE coffee and soda. I got back into the stuff and I drank a lot of it. I was a teacher; I needed that caffeine to survive, for goodness sake!

So, three months later, I had a flare up. Another dose of painful, bloody elimination.






I didn't understand. Wasn't I supposed to be all better? I had followed my doctor's advice and prescription for a year, and now this? I thought, "I hate this soooo much!" And here I was again, flaring, spotting, cramping and getting ready for the big explosion. I was so upset.

Of course, not fully armed with the information I would later, much later, have, I went back to my doctor. Where else was I going to go? This time, my proctologist prescribed suppositories. I left the doctor's office feeling 'Oh, this is great... A bandaid for my bleeding ass! Thanks doc!" as I cheerily danced away. I never even got a follow up call. I guess I wasn't yet ready for surgery so why bother? I don't know.

And that was the last time I saw any proctologist for my treatment. I really felt my diagnosis was a systemic problem that my procto could only treat. Infuriatingly, there was only the doctor's lip service to nutrition. I was determined to solve my own diagnosis by understanding all I could about nutrition and how my body metabolizes food and sources of energy and what were the sources of energy that I could consume without the aggravated outcome I'd been experiencing.

My goal was to understand my own immune system and become its best friend. And if that salvo was the best my proctologist could do, I was certainly going to have to do this without the help of western medicine. Western medicine gave me one of its best and brightest in the field of ass diagnosis and treatment and, in essence, gave me their best shot. It appeared they were going to treat my dis-ease as a lifelong condition, not cure it. With little sympathy outside the medical establishment, I chose to turn elsewhere.

I really wanted a cure. However, if I could manage my IBD diagnosis, my ULCERATIVE COLITIS, without drugs, I would consider it a huge victory, and a "cure" for myself. I would test myself over and over again for 20 years before I finally got the message. I examined a lot of information along the way and, one by one, I found out some information that I applied to my situation.

When my body experienced these symptoms, I couldn't hate my body. I had to flip that paradigm because what I discovered was that I had to fall in love with my body all over again. Loving my body, and acting in its own best interest, is part of what I believe I'm supposed to do. After all, I didn't make my body. It's a precious, precious gift of life. It turns out, I was poisoning my best friend. And I had to stop.