JULENE'S PERSONAL STORY

February 11, 2016 Gastroparesis

I was officially diagnosed with Gastroparesis in March of 2014. However, my doctors feel that I have been suffering with it for much longer. In 2007 following a surgical biopsy I was diagnosed with Reflux. I had started experiencing classic reflux symptoms with heart burn and a lump sensation in my throat. The piece that didn't fit was constant and random regurgitation of undigested food. I started anti-reflux medication and significantly changed my diet. I felt well for many years controlling my symptoms with diet. I was living as cleanly as possible,eating well, and exercising regularly.
I was a long distance runner and just got used to the fact that my body didn't tolerate nutrition the same as everyone else's did. I threw up during long runs and would be violently I'll afterward, but felt determined to finish that first marathon. About a year and a half ago I completed my last half marathon and haven't run a step since. From that time on my body stopped tolerating food altogether. By Christmas of 2013 nothing of substance would stay down. And so it began, the long road to figure out what was causing this.
I had another EGD in February along with a complete work up for any possible autoimmune disorder that was causing my anemia and constant stomach pain. EGD was normal. A gastric emptying study was ordered in March which confirmed the diagnosis of Gastroparesis which led me to find out all I could about this illness and how to treat it.
I was started on Zofran which I took like candy for the following 9 months and even with that was unable to keep down anything more than a few hundred calories a day. I maintained myself on a complete liquid diet of meal supplements as recommended by my doctor for about 9 months and then my body stopped tolerating those as well.
I was found to have slowed motility throughout the entire digestive tract. My weight and health continued to drop. This December my doctor recommended placing a GJ tube. I have been on a continuous feeding schedule since then. I know this is not a cure, but it is helping me and I am so thankful for that. I want to encourage anyone struggling to never give up hope.
Timeline:
February 2014- EGD
March 2014-Gastric Emptying Study
May 2014- CT Scan of abdomen and pelvis
August 2014- Repeat Gastric Emptying Test
September 2014- MR enterography
November 2014- Colonoscopy (cleanse prep did not work, possible most painful 24 hours of my life)
December 2014- Iron infusion
December 2014- SITS marker test
December 2014- GJ tube placement with 4 day hospital stay for re feeding syndrome.
Upcoming:
Button placement January 28!
Possible colon resection surgery.
And who knows what else, but today I'm feeling so thankful for my feeding tube and all of the support of my friends and family! Thanking God for his provision and still believing he can heal me!

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