My Diagnosis Story of Crohn's Disease & POTS

When I was diagnosed at nineteen with Crohn’s Disease; almost eight years ago, I had no idea how much it would change my life.  Before, I was a high energized person constantly on the go, never taking the time to fully appreciate life.  Afterward; I had to learn to slow down, pay attention to what my body was trying to tell me.

Me In College Slowly Getting More Sick From Crohn's Disease

As I got properly medicated and regained my strength, I went right back to the way I was.  I was working full time, working out every day, not knowing I was fighting a battle I would soon lose.  I’d have to leave my job because of being so over run, but the second my health would approve, I’d start right back where I had left off.

I moved to Oshawa to go to college full time.  I was having a blast.  Classes all day, then two hours at the gym, and off to hang out with all of my friends in the residence.  By the time the year was coming to a close I was so sick and in so much pain that I couldn’t sleep at night, so I’d try to nap when I could on my break in between classes.

I wasn’t well enough to go through my second year to get my diploma.  I was having what I thought was a full blown relapse.  I moved home and immediately went back onto my medication and started working with my G.I. team find out why I kept getting sick.  I started working again as well, but only part time.

Almost a year later, the G.I.’s came to find I had nerve damage in my intestines, which was what was giving me all the signs of a relapse.  I was started on a new medication and went back to work.  Unfortunately, something was still amiss.

Slowly I got worse and worse.  I was so bad I couldn’t even stand long enough to cook myself a meal.  Thankfully, a heart murmur I had grown up with was noticed by one of my G.I. doctors.  Even though it never affected me, they just wanted me to get a check up and a referral was sent to the cardiology team.

Over a year later after the Cardiologist noticed I had a supremely high heart rate, the team did a Tilt Table Test, to find that because of the nerve damage from having Crohn’s Disease, I would now be stricken with nerve damage all throughout my autonomic nervous system, diagnosed as POTS (Postural Orthostatic Tachycardia Syndrome).  A rare, but truly debilitating disease like Crohn’s, with no known cure, but different in the sense it is very hard to control.

I now wake up every morning from having slept on a bed wedge to help with my heart rate and when I am forced to stand.  I lay there awake until my body stops shaking so badly it is no longer rocking the bed.  I get up, grab a glass of water, and relax on the couch for the next couple of hours until I am well enough to get myself something to eat.  Any meals I make are prepared on my kitchen floor with a cutting board.  On a good day, I can bathe and wash my hair.  On a bad day, I can’t get out of bed at all without passing out, crawling to get to the bathroom.

I am still going strong though!  I have a Crohn’s Disease support group online, and a blog that gives advice, recipes, work out tips, and videos to help others who suffer like I do.  I also do video blogs on You Tube, sharing my story and answering any questions I can, and what life style changes have helped for me.

I am also taking the Social Service Worker program at Loyalist College from home.  The professors have been amazing about letting me work at my own pace, since they know it’s the career I would love to be a part of.  To let people know that despite it all, life is beautiful and most definitely worth fighting for.