Things change and stay the same

On Halloween in 2015 I got incredibly sick and went to the ER. Nothing was ever the same after that. I ended up being diagnosed with gastroparesis in January of 2016 after months of being sick and unable to tolerate any food and hardly any liquids.

But the doctors here still had nothing to do for me. Their medications failed and the nurse practitioner I saw here told me to “eat ice chips.” I was in her office, covered in a blanket, barely able to walk, and had lost 20+ pounds in a month.

At that moment I told her she needed to figure something out because I would die if she didn’t. Thankfully, my mother-in-law was there to back me up. I got a referral to go to Vanderbilt the next day.

I drove myself the two hours late at night at the beginning of a snow storm to a hotel in Nashville. I could barely navigate the room or the will to keep going.

I visited the doctor who would later become my hero at the Digestive Disease Center the next day. I was admitted following that appointment and my mom stayed with me for 6 days at Vanderbilt.

This was when I got my first feeding tube. It was a long 1 1/2 years with the tubes. At first I had an NJ that had to be replaced 3 times and was torture every second I had it. But I had nutrition. From there I got a GJ tube. This tube was supposed to help me drain my stomach and provide the nutrition I so desperately needed. It never worked that way. My intestines absolutely hated the tube. I didn’t know then that my nervous system had gone haywire.

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After a year of tubes not working, in desperation I asked my GI for a referral to Mayo Clinic in Rochester. At this point I’d researched so many things because I just knew that something had to be causing all of my issues. And I was right. In Rochester I was diagnosed with hypermobile Ehlers Danlos Syndrome, autonomic dysfunction, small fiber neuropathy, a disorder of the rectum and colon that makes it really difficult for my intestines to work (thanks nerves!), and information for other things that needed to be explored. One of those things ended up being POTS. Another is a suspected neuromuscular disorder that I will get evaluated next month.

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In October of 2017 I was able to have my GJ tube removed. It hadn’t been used in a long time and was just causing problems. I was so happy to have it gone. Things were looking better.

Then, in January of this year, I needed hip surgery. All of my joints are beginning to fail. Following surgery, my digestive system has called it quits.

I am currently starving, vomiting, and my intestines aren’t moving. I’m trying to coordinate with my doctors who I really respect but it’s not getting anywhere fast enough. I am terrified I will need a feeding tube again. I believe I will refuse a tube if it’s deemed necessary. After the last experience, I have seen that my body won’t tolerate it.

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Its a scary place to be right now.

One comment

  1. mychronicself7 · February 10

    I’m so sorry you’re going through this, but thank you for sharing your powerful story. It’s so frustrating to get shuffled from dr. to dr. only to get misdiagnosed and receive less-than-compassionate care. I hope you don’t need to get another feeding tube and that things start to turn around soon.

    Liked by 1 person

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