Ever since I was a teenager, I have always had GI troubles (or as my dad calls it, a "busted gut"). Perhaps going on Accutane wasn't the best idea. Research shows it'll pretty much destroy you from the inside out (but your skin will look fantastic!).
A while ago, I experienced a new feeling.
Soon, it happened again.
It began happening more and more often.
(I've never had to say anything as professional as "profit margin" in my job, but I can dream.)
When I lost about 10 pounds in a week despite maintaining normal eating habits, experienced internal bleeding, maintained a constant fever, and had some other unpleasant symptoms...
...I decided it was time to go to the doctor.
Who unfortunately decided I was in need of a colonoscopy.
Nothing says "day off from work!" like having your innards inspected while under heavy sedation.
The trip to the hospital was an adventure. I checked in at the Texas Medical Center - the world's largest collection of medical facilities (hospitals, research facilities, labs, medical and nursing schools), all connected by sky-walks, tunnels, parking garages, and Starbucks. The medical center literally forms a skyline one might find downtown in a midsized U.S. city. People call it the TMC. I call it a moving tribute to American innovation. Or needle city. But that's just me.
A friend had to drive me at 6:00 in the morning. We were both groggy and confused.
We ended up wandering around a parking garage until we locked ourselves in a industrial looking stairwell. Finally, we found ourselves in a building that looked medical in nature.
Soon, I was in a gown, under a warmed blanket, and hooked up to an IV bag. As the nurse was inserting the needle, I heard her say "Hey! We've got a spurter!" I looked down just as she commanded that I not.
Soon it was time for me to say goodbye to my friend (including several jokes about it possibly being a permanent goodbye) and I was wheeled off to my procedure. As the nurse rolled the bed down the hallway, I couldn't help but sing the Darth Vader theme song. She didn't quite think that was as funny as I did. A fellow patient to whom I called out, "see you in heaven!" didn't think I was quite so funny either.
The events that followed are a little hazy. And by a little hazy, I mean I sort of recall the staff trying in vain to rouse me and then eventually giving in to the fact that I was going to take a few hours longer than normal to fully wake. Apparently, the doctor explained his findings to my friend and me, but I didn't quite follow.
As I staggered out of the hospital and back into the rusty stairwell, I had one heck of a case of the hiccups, which was probably my favorite part.
Later that afternoon, as the grogginess wore off, I began reading through the pamphlets the doctor sent home with me, as well as my medical report. (My favorite part of the pamphlet was that a lot of the pages had "Notes" sections, with empty lines where I could jot down who knows what.)
Ulcerative Colitis.
An inflammation of the large intestine that is lifelong, affecting about 500,000 people in the U.S. Symptoms can be managed in many cases, but removal of the colon is the only known cure.
Ulcerative Colitis.
I said it out loud several times, as if getting used to a new scar or tattoo.
There are several kinds: one that affects just the lower part of the intestine, one that affects the left side of it, and then the bad one that affects the whole dang thing. Pancolitis. I looked at my medical report. "Pan" was pretty much written all over it. Uh oh.
The pamphlet also had pictures of people looking calm but slightly uneasy.
I wondered if maybe I should start looking deep in thought too.
Probably not.
When I spread the word among family and friends, everyone soon became an expert on how to manage this.
The fact that medical research supports that uclerative colitis is mostly unaffected by diet didn't seem to slow any of them down from dishing out advice. I suppose it felt good to be loved.
When the first treatment of heavy medication didn't work, the doctor put me on a second drug - a steroid that makes you feel like you've had about 90 cups of coffee, makes you ravenous, and cranky. I actually didn't have too many of the side effects, but there were some.
Currently, I have yet to make any real progress in treatment, but feeling wired all the time is actually pretty fun. Plus, I'm saving so much money on coffee. And I get to make unnerving jokes about being a walking skeleton. Things could be way worse, and in my book, that's pretty good.
8 comments:
Oh, man. Good luck with this. I think it was an important cathartic exercise to paint through this.
Yes, quite. When they say painting is a cathartic experience, I wonder if they have the MS Paint medium in mind. Somehow, I think it is unlikely.
I think I'll make your flaming large intestine your profile pic on my phone... :o)
In that case, I'll be calling you often. There's no greater motivation to give someone a call than to know that a flaming large intestine will appear on his or her home screen.
Hey man, I like your take on this disease you have. It's awesome you can look on the brighter side of things, but at the same time I'd like to give you some help, as I'm a 21 year old guy in college, just diagnosed this september and still currently finding methods to treat myself.
At first I thought this was bullshit, the doctor who did my colonoscopy is a typical know-it-all westernized American GI doctor who only treats with medicine. But yet the first few words out of his mouth were, "NO ONE SHOULD BE ON MEDICINE".
I went against his words and started experiencing even worse symptoms. Going 15 times a day, lots of blood... I lost 15lbs which made me really angry (being an already slim guy in all). My doctor was an ass, and said stuff like "There is no cure, you will always have to deal with this or You'll be on this medication for life" I wasnt going to settle for that. So i started seeing a naturopathic doctor (who isnt some quack, she actually went to medical school but specializes in natural healing.
Aside from my GI doctor putting me on the usuals (Asacol & Prednisone (steroids), my naturopath gave me some wicked potent Loose leaf herbal teas, L-glutamine and Aloe Vera juice all of which restore the lining on your gut, and now i'm taking probiotics and fish oil daily... All of which has helped me.
I honestly think you should read on the risks of prednisone, its no joking matter, i mean its disgusting how this medication is even legal, given that most people who stay on it for more than a year get serious life-long side effects. It's best to look into things naturally, they've really helped me and I'm doing well right now! I weaned down to 7.5mg of prednisone and my body is starting to adjust (as thats a synthetic hormone that makes things worse when you lower/increases dosage too fast.
I really wanna help you and others out there so if you have any questions be sure to shoot me an email, tygi05495@hotmail.com. I wish you the best of luck, for now check out these forums: Healingwell.com > Ulcerative Colitis, lots of support and information there.
Thanks Stereofidelic89! All this advice is so helpful. Glad you are managing it well!
People who actually believe they have a colon are the same people who believe in the Easter Bunny.
Hi Jordie,
Your blog is awesome! Your story is all too familiar. I am really sorry you are stuck dealing with UC. I don't have it, my fiance does. He had his colon removed a couple of months ago. I have also been inspired to illustrate the experience.
Keep up the good work and hang in there. Thanks for putting yourself out there. It is encouraging to know there are other people living with UC and fighting the fight. It's crazy how hard it can be to explain what it is like to people who have no experience with it. Have you joined the CCFA. We have found a good outlet and support system with our chapter here in CO.
Sincerely,
Jessica
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