My Story

My life got flipped upside down in October 2014. I was loving the university life when I got hit with a nasty chest cold. I didn’t think anything of it because I lived in residence and everyone got sick in residence. The res-flu legend was very real and once one person got sick, you were screwed. The real problem only started though when my cold went away. I wasn’t coughing or sneezing anymore but I never got better. My cold symptoms were replaced with nausea, fatigue, and other fun gastrointestinal problems. I started dropping weight like mad but we couldn’t figure out why. All my blood work done in Newfoundland came up fine. I eventually got to see a gastroenterologist on The Rock who did an endoscopy and observed excess fluid and food in my stomach despite fasting which they noted could be gastroparesis. Even though I felt awfully miserable, I decided to finish my first year anyways and I sure am glad I did.

Me and my person, Erin.

Me and my person, Erin.

Fast-forward to spring of 2015 when I got home from university. My family doctor pulled some strings and got me in to see a gastroenterologist pretty quickly. By that point, I had lost 30 pounds and could barely eat. My GI did a colonoscopy thinking it could be Crohn’s Disease or Colitis. When that came back fine, we were stumped. At that point, my doctor was ready to pass it off as Irritable Bowel Syndrome though it didn’t fit all my symptoms. Meanwhile, my parents and I were doing our own online research to try and find a diagnosis (which doctors totally appreciate). We read about gastroparesis and all the symptoms matched up! The next time we went to see my GI, we brought it up. Though she thought it was highly unlikely, she ordered the one true diagnostic test: the gastric emptying scan. I then had the pleasure of enjoying a delicious meal of radioactive scrambled eggs and milk (leading to the namesake of my  blog).

Looking oh-so-fabulous with my first NJ tube!

Looking oh-so-fabulous with my first NJ tube!

A few days later, after the emptying scan, my doctor called. We finally had a diagnosis! It was in fact gastroparesis. Though obviously it sucked be diagnosed with something that’ll probably stick around my whole life, it was awesome finally getting to put a name to what I was feeling. Everything started to make sense. Until it didn’t. People don’t often just get gastroparesis for no reason so that opened up a whole new can of worms.

At the end of June 2015, I was admitted to the hospital for the first time.  I was still losing weight and could barely walk. What we thought may be a week or two in the hospital turned into 8 weeks. Shortly after being admitted, I got my first feeding tube, an NJ tube. Though it wasn’t something I wanted, it was most definitely a necessary evil. During my time in the hospital, I got almost every diagnostic test done that is known to man. We found some interesting stuff like I have a congenital heart defect, my gallbladder no longer works, and I have SMA syndrome but nothing to explain the gastroparesis. My doctor decided to call it a post-viral gastroparesis, caused from the nasty res-flu. Once I got a PEG-J tube put in, I was finally discharged from that crazy place I started to call home.

My current feeding tube, Peggy the PEG-J

My current feeding tube, Peggy the PEG-J

Between then and now, I have traveled down to Boston to see and super cool motility specialist at the Lahey Hospital and have landed myself in the hospital once more (though that’s a story for another time). I now have a big team of doctors helping me figure out how to make living with this illness as pleasant as possible and am planning a second trip to Boston in the first week of December. Though at this point my stomach, my bowels, and my gallbladder have all given up on me, I haven’t given up on myself and that’s whats most important. I’m just working on Kathleen 2.0.

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My “Warrior Beads”. Each colour bead represents a step in my journey: a night in the hospital, tests that I’ve had done, etc.

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