My name is Adele and I have been struggling with gastroparesis since 2010. Before I fell ill, I was an elite athlete cross-country ski racing all over the US, Canada, Scandinavia and Europe. It was my dream to win Olympic gold, and I was projected to make the 2014 Olympic team. I would have been 23 years old.
I always had colon cramps and constipation as a child, but didn’t think much of it. On May 17th 2010 I started throwing up food unintentionally when I ate or drank. I quickly dropped 40lbs and looked like a skeleton. All the muscle I worked so hard to build was gone.
I went to the Mayo Clinic a few months later out of desperation. They did every test in the book and came back with gastroparesis, colonic inertia and slow motility through my whole GI tract. The meds they tried me on didn’t help and none of the laxatives worked.
In 2017 I went back to the Mayo Clinic and they suggested an ileostomy for my colon, hoping that would speed up my stomach. The ileostomy is great, but my stomach is still paralyzed unfortunately, as are my intestines.
I now live with two tubes – a jejunostomy tube for medications and gastrostomy tube for 24/7 draining stomach contents because I can’t digest the bile and acid that back up in my stomach. I don’t get to enjoy food and it makes me sad, but finally I’m down to throwing up every few days, rather than throwing up 15 times a day without any oral intake.
I have a Hickman central line for TPN and that’s how I get my nutrition. I also have fluids I do on top of that as needed. I hope, and my doctors hope, that we can get things working again. But I don’t know when that’ll be. We are still trying to figure out why organs keeps shutting down. It’s very unsettling not knowing the cause. Although I do have Ehlers-Danlos Syndrome, and that genetic condition could explain my GI issues, however, according to my geneticist, it would be very extreme for EDS to cause this bad of digestive issues. So we keep looking for answers. I told myself I’d be done with this health journey by age 20. I’m 30.5 and still dealing with it.
Unfortunately due to this illness, I haven’t been able to really involve myself in life. I don’t have much energy for socializing or doing anything. I pretty much lie in bed all day, occasionally getting up to sew for my Etsy store, or paint for pleasure, or write articles to hopefully be published on the mighty.com. So far I’ve had a number of articles published by them about my journey with medical illnesses. But I don’t get out and make connections. And I haven’t been able to go to school or hold down a job. So I live a pretty lonely life. But I have an amazing service dog and my parents live close by, and I do have a few friends in the area I get to see occasionally. And thanks to zoom, I get to see my siblings at least once a week!
I’m nowhere near the end of this journey, and as daunting as it is, I am determined to live a better quality of life.