To spread the good word.

Trying hard to orientate myself with the blog world,

I decided to tag specific youtube videos in relation to

the brown illness, Crohns. I couldn't help myself, I usually

have some self-control, I slipped and read the comments posted below.

And as what usually happens when you enter the mind

of individuals, you get surprised.

Some of these questions read like this. I thought I would be kind enough to answer.

Does Crohns effect your sex life?

As those afflicted with Crohns are at risk of Anemia, not having the

energy to get yourself up and out of bed, move or shake.

Just might effect the rise of something else.

The lack of energy sure will effect your performance.

I once saw a lady pass out at the dinner table "face in the soup"

kind of thing you see in cinema, because of anemia.

Just to give you an idea.

Also, pain, stomach cramps, fear of flatulence, all situations

that might cause you sexual distress.

Just think, not making love all those hard days while fighting

Crohns. Think about after you recover.

All that pent up frustration, think of the fun you'll have

when health resumes!

Humor and Crohns!

It's a necessity for survival. You have to have fun with it.

You, the afflicted. Hold within, a tool, CH_4.

That is the atomic number for Methane. You and I. Us Crohns

citizens carry within something truly atomic.

Use it!

I was in a Foosball tournament in College some years back.

When the beer began an obvious rumble.
I loved bars for the noise. No one could hear the

whining of my guts. Something that caused me some

embarrassment upon introduction to the opposite sex.

They would always make a queer face, and I knew they were wondering,

waiting for the inevitable.

Anyways, Foosball.

The beer meets intestinal tract, a

viscous gas begins to brew, and needs to find an exit, fast.

The smell is something that demands attention. As foosball

requires total focus. Yoda like Jedi reflexes. My opponents

wince, always left room for manoeuvre. I couldn't lose.

Is that cheating, well, like Houdini said when asked how

he could lift so much weight, Leverage.

Pitchers in baseball rub all kinds of strange substances to

aid their curve-ball. I'm sure if it would work, CH₄

might bring about a new definition to the baseball term "the heater".

Oh No! Here comes the HEATER! Catchers

diving out of the way, stolen bases, mayhem.

In high-school after a hard day of social upheaval

I would turn to my secret weapon in times of vengeance.

As all the nice kids in their catholic uniforms would hurry

and scurry between classes,

I would let free a rectal missile.

Hurry ,quick.

I would wait at the end of the hall and enjoy

my creation. Ohh man, that was funny.

Kids pointing at each other,

laying the blame where they saw fit.

Never noticing I, standing tall in internal rapture.

Another time I was waiting for the

light to change in Montreal,

freeing a subtle whistle from below.

My girlfriend sensed it's presence and gave me the look.

A job well done I interpreted.

Holding in the laughter as the group

behind us started to retch.

A young boy in the group looked at each their faces and said

confidently, "it was me".

We laughed the rest of the way home.

As the song says. "Life's a gas!"

I couldn't agree more.

My point is, the disease is apart of your life.

It's a strange affliction indeed.

I often wonder what sort of karma brought it about in me.

I believe everyone has their thing, their illness, whatever it may be.

Crohns is controllable, if you've the right attitude.

You must control your stress. The disease begins in your brain,

and ends in your brain.

Even after remission I realized the remaining

problems are in my psyche rather then my bowels.

Every fart initiates a sense of fear.

My mind starts clocking possible escape routes,

there's a bathroom there, there, and

there.

Sweat on my brow,

I tell myself relax,

the worst is over.

I can wear boxers again.

Laugh friends, it's the best coping mechanism.

Trust me.

...gatsby~

Exercise and the Gastrointestinal tract.

I've only had one doctor ever tell me to exercise. Another once

told me my hamstrings were pulled tight like a hula-hoop around

a sperm whale and that I should stretch.

Exercise was the key to sending Crohns disease

back to where it came from, oblivion.

Yet it seemed nobody knew.

If i'm inactive, sitting on my rumpus counting peanuts and flicking

belly button lint into a wide garbage container, my health begins

a rapid decline. I lose weight and end up getting all my reading

done on the bowl.

My initial flare-up fifteen years ago came about this way. It was

a time of great change. Elementary school had finished, where

I was at the top of the social order of things. School work came

easy, life was easy. I knew high school was coming, I could sense

it's ominous shadow, lurking. Change was difficult to accept.

On top of that my parents thought it would be a good idea if

I started working, so they sent me into the deep darkness of

industrial Ontario, for reasons, to this day I'm still curious about.

bygones, I'm sure they had their reasons.

Even now I can still feel the stress building.

Thirteen was the age, the death of my innocence.

That summer began the symptoms.

Blood in my stool.

Stomach cramps, extreme weight loss ( I believe

I went down to ninety-one pounds at illness's peak, down from one hundred and twenty).

I went into denial, as did my family. I can remember rationalizing the

blood as only a child could.

It was the ketchup I ate, always the ketchup.

I went into a survival mode, quick. Dealing

with it like it was the natural order of things. Some people are

hypochondriacs, others like myself deny their illness until there incapable of

standing on their own.

So went life, so came about my understanding of loneliness.

I began an internal existence, going from one small goal to the next.

In high school I knew where every toilet was positioned,

it was always one class to go, then salvation. Getting off the

bus and sprinting home, visualizing the relief only the

toilet bowl could grant me. Dark days.

Three years this went by, scraping by school, not the

energy for anything. Its strange being so tired but

not being able to sleep because of the pain, a double edged

sword. Until finally having gone through two Gastroentologists,

mis-diagnosis after mis-diagnosis my body reached

its breaking point, ninety-pounds on a six-foot frame

is a skeletal figure. Into the hospital I went.

If it wasn't for the strength of my aunt to wake my family

up to the reality of the situation I would be dead.

Such is life. The only thing we can do is accept it, think about

what lessons were to be learned, apply them to your personal

philosophies, and motor on.

You will never get the credit you deserve, because no one but

you will ever know what you went through. You can become

bitter about the screw-ups by people whose

job it is simply to make you better no-matter what the cost.

Greed and indecision are powerful in the human psyche, accept

them, recognize them, avoid them, and think of an alternative.

Above all exercise. No matter how hard it is, move. Walk, use light

weights, push-ups, sit-ups, chin-ups. Run, be physical. You must

take care of your body if you want it to work well. If you

have this annoying little problem, this leech in your gut, beat it

back with what you have readily available and at a low cost.

Fight! You've only one life to live. So Live it.

I love this article I just read about vitamin D and the beneficial

effect it has on people with Crohns disease.

http://www.sciencedaily.com/releases/2010/01/100127104904.htm

what a brilliant idea, vitamins help disease. I always wondered

where all the money went from all these foundations the aid in

the research in disease. I believe I just got my answer.

I'm beginning to rant and I apologize. The topic is diet and exercise.

As I sit in the lazy boy at the infusion clinic where

I receive my Remicadetreatment, my attention

often drifts into the conversations patients

have with the medical practitioner.

As was the case in the doctors office

in London, Ontario, where the office was

almost like an open air classroom.

You couldn't help but hear everything each

patient was rapping about.

I dreaded going into that office, in the basement of

St. Joseph's Health Care Hospital.

People it seems in my observations end up

relying on the drugs, thinking

it a quick fix. Take this pill and your sure to be

better within such and such a time.

If it doesn't work, there will be surgery.

Losing a body part was enough

motivation for me to do anything in my

power to find an alternative.

And so I fought through the pain, got on

my bike and starting to peddle.

It was hard as hell. Harder then anything

I ever had to do, but I felt

better. I met this kid who had diabetes,

who did the same thing.
It's been proven that through a extremely

intense work-out regime.

"It almost has to become your life" he told me.

You can beat diabetes.

No matter how hard it is, it works.

I took this idea and made it apart of my life.

I cut out all the stress I could, changed my diet.

No fast food, fried foods, milk ( I drink soy, it's

weird at first, you get used to it like anything.)

Take a multi-vitamin, Vitamin D,

Cod Liver Oil, Raisin Bran in the morning

for a more solid movement.

Work out an hour a day, whatever it may be,

weights, walking, running, biking, making love.

What a surprise I beat my most recent flare-up in record

time.

I believe I only got sick again because of the extremely high stress level

I put myself through. A youthful mistake, I won't make again.

My point is, you can't rely on the drugs,

I can't emphasize that enough.

Your goal should be to get off all the medication.

I did it before and

it was one of the best days in my life. Waking up

looking at the shelf

where all the pill bottles sat, and seeing nothing.

Having to do nothing.

Feeling healthy, feeling normal.

Find your own way friends.

How many people can you really trust in

the world besides yourself.

Some people are lucky and there are many,

others, like myself, can count them on one hand.

Listen to your body,

and you will not stray from the healing path.

...gatsby~

Raisin Bran and Remicade.

Was it the bran or was it the drugs?

Here's a question worth pondering over.

It might take more cognitive effort, but

it's results, I imagine might hold a little

more weight then say wondering

if 'ol "tiger" is a sex addict or not.
Not much of a question if you ask me,

as I believe humans are sex addicts,

the mammalian evolutionary stigma

we still wear like a fur hat in a Moscow

icecapade. Where did that come from,

I guess I'm sweating out Olympic fever.

Capitalize everything, for it's a capitalist

society, that's what teacher told me anyway.

The topic of today is Remicade.

Rema Rema Remicade.

Another drug that will get you easily addicted.

Sure it's a quick fix, sure the side effects are

near to nill. As opposed to Prendisone "HULK SMASH,

HULK BASH." I once put my swollen hand through a

window because I missed the bus to take me to a doctors

appointment. I'm not a violent guy, I'm just saying. It may

be legal, it had me feeling oddly like meth-head running

down a steep incline gaining acne as I gained speed.

All these "legal" drugs, always get me thinking about

natural remedies. This very thought is what had me

thinking about Raisin Bran. How after eating a couple

bowls each morning, suddenly my trips to the toilet

have become the same as someone with a healthy colon.

Is is the drugs I say, or is it the bran?

Scientific research has shown.... nothing. What a surprise.

I heard this joke once by robin williams. He was saying

that as people age they loose control of their bowels, he says..

What the !#$# is that! What do the scientists and doctors do

about this, what do they come up with to help you to enjoy your

golden years, they invent Viagra. I see the logic. I do.
But if your in the middle of a sexual escapade with your

octogenarian partner, and in the middle of the performance

your plagued by "leakage", I'd say the moment is lost, and

despair is bound to follow.

It's curious how at some point your taught or told to swallow

everything the doctor peddles to you. For good or ill, because of

a lack of knowledge, you obey. You don't have any other choice.

This is why research, and one positive aspect to the internet, is now

the information is readily available. You must read! You have to

trust yourself. Trusting someone else, unless proven to you through

years of experience, could potentially lead to disaster. Trust

me. I'm not the only one who was a victim of medical malpractice.

I've been on Remicade, for about three months. It is true there

has been a dramatic improvement since my first injection.

I'm not entirely convinced it was the drug. Before Remicade

my health was improving from various antibiotics that I needed

to cure infections in my nether regions, the source

of debilitating cramps. As the pain subsided I was able

to muster up the energy to exercise, simply walk around in the

beginning. Sit-ups, pull-ups, and push-ups. With steady diet of

stir-fries, protein shakes, fruits, and vitamins, rest, and a positive

attitude. I was able to pull myself together.

Along comes remicade, Damn right it gave me the push I needed to

get healthy in record time, but I know for a fact that I was more

responsible for my dramatic improvement then the drugs.

"I trust myself, not the drugs dammit."

Here is what I read about Remicade in regards to fistualizing disease, as this

is what pertains to me.

"Infliximab (remicade) was first used for closure of fistulae in Crohn's disease in 1999. In a 94-patient phase II clinical trial, the researchers showed that Infliximab was effective in closing fistulae between the skin and bowel in 56-68% of patients.^[1] A large 296-patient Phase III clinical trial called the ACCENT 2 trial, showed that infliximab (remicade) was additionally beneficial in maintaining closure of fistulae, with almost two-thirds of all patients treated with the 3 initial doses infliximab (Remicade) having a fistula response after 14 weeks, and 36% of patients maintaining closure of fistulae after a year, compared with 19% who received placebo therapy." [2][3]

And it's true my fistula has nearly closed. Thank god for that. What interests me is the 19% who showed signs of improved after receiving a placebo. My theory is, and I have to do more research. Let's call it one of my working hypothesis. Is this. I really think that your brain is whats responsible for the healing. My illness is created out of stress, that I'm sure of. I'm more prone to Inflammatory Bowel Disease because of some genetic mutation that may be true. I think if stress which starts in my brain is the trigger for the flare-ups, the solution might simply be in your brain.

Could it be we're looking in the wrong place, could it be we're not looking at all.

I mean they found Remicade by accident. As it's true most great scientific discoveries come

about this way. I just think it would be nice if there was a solution that didn't cost three thousand

dollars. Something like Raisin Bran!

...gatsby~

1. ^ Present D, Rutgeerts P, Targan S, Hanauer S, Mayer L, van Hogezand R, Podolsky D, Sands B, Braakman T, DeWoody K, Schaible T, van Deventer S (May 1999). "Infliximab for the treatment of fistulas in patients with Crohn's disease". N Engl J Med 340 (18): 1398–405. doi:10.1056/NEJM199905063401804. PMID 10228190.
2. ^ Sands B, Anderson F, Bernstein C, Chey W, Feagan B, Fedorak R, Kamm M, Korzenik J, Lashner B, Onken J, Rachmilewitz D, Rutgeerts P, Wild G, Wolf D, Marsters P, Travers S, Blank M, van Deventer S (February 2004). "Infliximab maintenance therapy for fistulizing Crohn's disease". N Engl J Med 350 (9): 876–85. doi:10.1056/NEJMoa030815. PMID 14985485.
3. ^ www.Remicade.com

And with the woosh of the bowl, it began.

This blog, this journal, this epitaph will be a documented account of reflected learning in regards to my sixteen-year-long battle with crohns disease. With just a touch of ulcerative colitis for good measure.

The first time I saw the word "C.R.O.H.N.S" spelled out in front of me like blood on a paper towel.

I thought it poorly written.

I thought it an alien typography, it felt foreign in front of, foreign inside of me. My story is one heard a thousand times. One of saddness, confusion, mis-diagnoses, heartache, and least of all anger. A tale of self-discovery, understanding, a battle against myself, and the will to survive.

My aim is to share my tricks for dealing with "the rush", the mad-dash

for the toilet.

Techniques for dealing with debilitating stomach cramps, and the cornucopia of

other small aches and pains from toes to tonsils.

The diet and exercise regime that brought me back from a puddle of a man,

into the positive, driven, healthy reflection I am today, in record time.

I will share with you my experiences with doctors, from Ontario, Quebec, British Columbia,

Australia and Tasmania, in the hopes that my observations will help you in choosing the right

physician. It has been my experience, as the right doctor can save your life, the wrong one

can just as easily take it away. You must be cautious!

I also plan to share with you, the reader, my insights into the disease. As our trusty doctors

and scientists haven't the foggiest idea what the cause of Crohns disease is. I have

put forth quite a bit of thought into what brings about a "flare-up" in the depths of

my unmentionables. As I have no doubt that everyones body, everyones mind works

differently I can only hope that what works for me can help you in your own battle.

Also some ideas as to why in Australia the Gastroenterologist offices I visited where

barren as opposed to the cluttered waiting rooms of Canada.

Could it be the water, Gasp!

All of this in the hopes that my insights will save you at least, some time. Because

life is precious my friends, the quicker you realize this the better off you'll be.

Let it begin, as the bits turn into bites, as the ideas and reflections take

shape. I hope to build something unique.
Comforting and insightful.

I am not a doctor, just an introspective patient, with an optimistic view of

life.

bonne chance.

...gatsby~