Are you ready for the challenge of your life, being introduced to Crohn's/colitis?
It was November 1988, the winter was not the only thing that chilled me that fateful afternoon. It was a day that would change me right to my core. Why is life dealing me this awful hand, what did I do to deserve this? Am I not nice to people? Or do the answers still lie in left field?
How do you process the information given to you by a professional?
One: "Well I should have it, my Doctor told me."?
Two: "He is a wealth of info. Shouldn't doubt him."?
Three: "Then why did I only get two pamphlets when I was diagnosed in 1988?"
Four: Now I have the information highway. Back in '88, I relied on Dr's expertise, but found out the hard way that they go to school for years, but don't have the hands-on experiences we need. I have felt like a guinea pig since 1988.
Five: Don't get me started on pharmaceutical companies, another blog for another day...
Six: I have become more of a Doctor with hands-on experiences then my own Doctors/Specialists...
Seven: To control any autoimmune disease you have to have the knowledge.
Eight: I always say KNOWLEDGE is POWER!
Nine: To fight a battle we know nothing about, we rely on others instead of relying on ourselves!
Ten: Say it again; knowledge is power, and power gives you the tools to defend this DEMON, as long as you know what this Demon is!
Sitting here at 53 years of age, knowing health is the hardest battle to face. Don't know why doctors don't dig deeper to find out exactly what is wrong. Us warriors struggling to find answers only to have a Band-Aid on it. They might as well send you to an early grave, as it feels like I'm already in hell trying to fight.
Well it all started about the age of nine. I found my body changing, thinking it has to do with stepping into getting older. Didn't realize at the time the mystery of health has already started. I think my biggest problem was lack of knowledge and doctors to realize that I have not one but several autoimmune diseases over the course of my childhood and leaving it into adulthood. Wow. Struggling as a young adult, not knowing what I am going to face, the battle has started and my army of one will become a battle I never thought I had the strength to fight.
While watching a documentary on health issues I realize my problems started right from birth. You're wrong, that's where my problems begin and my journey to a greater health won't come until I am in my fifties. Born from a C-section, I should have got the microbiome from my mother but instead got it from doctors, specialists, and whoever came into contact with me that day I was conceived. Wow, I know I never knew this till I started with the knowledge I needed to conquer this disease and find out why my health is destroyed, as I see right from birth, with microbiome will chart your health for life... yes I said life! So now that I have more knowledge I can change my diet I will live as close to normal as possible.
But, lately health has not been my friend, and by the way, neither has any professional I've seen for my health. You think doctors go to school for a long time but you know what they say with most doctors; they have someone with that disease and they want to help them. Well I say help me instead too. Why can't I get the help I need? My answer is you have to be your own doctor and the knowledge behind it. Also don't let them tell you it's all in your head or you're hypochondriac. Wow, that seems to be my daily thing now.
So I have been suffering for most of my life, and it first started with trying to find out why I was so sick especially lately. Always wondering what the problem was, trying to explain as much as possible to whoever I'm seeing, but to no avail the mystery continues. They first thought it was my birth control cause they had no idea back in the 80s what it can be. So I changed my birth control every 3 months to no avail. Well they exhausted avenues for pills and then started next on my gallbladder because there were a couple stones but not enough for that much pain, so of course it is all in my head again. So guess what, they removed my gallbladder, and thought my problem is solved.
Guess what! NO!
Back to the drawing board I say! So, for the next few years I couldn't eat much as I was sick to my stomach. Seen doctor after doctor still blaming it on my gallbladder. I told them over and over again don't have one so can't be that, next! Struggling in Alberta, me and my boyfriend at the time decided to move to Kingston.
Well I had enough of losing weight and feel like I'm dying inside, I went to the hospital finally to be diagnosed with Crohn's/colitis. There were two autoimmune diseases coming to play and play it did.
The nightmare begins...
Got called into the Doctors office to find out I had Crohn's/colitis. Well blow my mind he did, and so did the next question and answer was even more. Asked him, can I die from this? I didn't want to hear the answer so I had to ask him over and over but got the same results, yes you can die from this, it was like I was out of my body looking down on this young woman of 24 and saying "holy bleep! bleep!" Thinking to myself, "what have I got myself into?"
You know doctors in and out so fast it makes your head spin. He gave me the information on pills to take and gave me two pamphlets about Crohn's and colitis and sent me on my merry way. Still not believing what I am hearing, I walked out shaking my head.
Wow, Crohn's and colitis... What is my next step?
Back in 1988, you did not have access to the computer and internet but I thought to see other doctors and a dietitian (cause they had the knowledge, for today we have the internet), thinking that they would help. Not!
At the time, that is what I would follow through with those professionals. So I thought I'd go to another dietitian. She put me on a diet that just about killed me, or that that's what it felt like. But my C/C they say was a "mild" case; those words should be taken out... "mild," are you kidding me?
So I proceeded with the next test which was a lactose intolerance test. We're back in 1988, they slice open a portion of your skin, I choose the back left side which haunted me from 1988 nutil 2007 when I got the bump removed. (Damn the wooden metal spindles on chairs, hit me every time, sorer than hell...)
They scraped the bone to see if I was lactose intolerant. Now I think it is all under blood work if I'm not mistaken, different technology for different times, and the worst of all, it's the most degrading, painful, dramatic, gassy, etc, procedure I've gone through in my life and up until now has been a lot. You go in for a colonoscopy, you get change into a gown, ask to lie down on a bed, then proceeded to shove an enema up your bottom. Then lie in pain for as long as you can stand and run to the toilet in the hospital room and poop your brains out. Then back on the table where they shove a camera up there to blow up your large bowel or intestine, and the pain is beyond measure. After going to hell and back you're sent home puking. Today's procedure you started at home, seven days of tragedy (happens to me), you're on a very limited diet and only clear fluids, Jello, etc., so you endure next to nothing for food and lots of liquids. Then you must drink 4 liters of one of the most disgusting drinks I've ever taken into my body and proceeded to empty bowels and repeat 6 hours later. Don't know what the second dose is for, I only need one dose cause I didn't have enough food in my bowels, and don't get as sick, my bowels is clean as a whistle on the first dose. Almost the same as with a small bowel follow up, but the procedure hasn't changed from the eighties; another cocktail I can't handle. It's like drinking chalk, literally! Then you wait, sometime they take pictures, you drink some more chalk and take more pictures then basically poop white. Seems like forever.
Can remember every sleepless night, the pain, and I remember how not knowing anything for weeks was a killer.
So, not getting the right information and knowledge leads to so many damaged days, months, years and now decades. When does the pain end? Where are all the answers to the questions that nobody seems to be able to answer?
Wow, and this is only until 1991. There is so much more to go through with this adventure. When I write my next blog, you will have the benefit of all my information-gathering thus far. This adventure is not yet over, however, as the mystery is still unraveling.
Thanks for reading.
Crohn's/colitis Warrior since November 1988.