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Esophageal dysmotility

Digestive Health | Last Active: Jan 31 8:10am | Replies (220)
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Hello everyone,

I’m hoping to get some input or hear from others with similar experiences.

I’ve been diagnosed with gastroparesis and esophageal dysmotility, which my doctors believe are related to my severe dysautonomia and/or lupus. I had a GJ tube placed in October to help bypass my stomach, and for a while, it worked really well — I still had some nausea but could tolerate my feeds, and venting the G-port helped.

However, things have been changing:

April: I started having very high G-tube output (often 600–1000+ mL/day). Doctors confirmed the tube wasn’t blocked or displaced.
Since then: I’ve had worsening nausea and increasing vomiting, even with J-tube feeds.
Now (August): I’m struggling to tolerate my formula at all and feel like I’m regurgitating liquids or even choking when I try to drink. It almost feels like my motility issues are spreading beyond just my stomach and esophagus.

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Replies to "Hello everyone, I’m hoping to get some input or hear from others with similar experiences. I’ve..."
Janell, Volunteer Mentor | @jlharsh | Aug 10 5:31pm

Hi @kcareconnections, and welcome to Mayo Clinic Connect! How frustrating to begin having worsening problems without understanding why. You have come to a good place to find support.

I am not a medical professional, trying to read a bit to understand your situation. You mention your doctors confirmed your G tube is not blocked or displaced. I found problems do crop up from obstruction or dislodgment, when the tube is out of tract. Assuming this is what they are referring to, this is good news. Another possibility (and maybe you are referring to this as well) is migration where the G tube has moved in relationship to the sphincter making feeds less tolerable, retching or vomiting, dumping syndrome or hypoglycemia. Another possibility is when the GJ tube flips. These can be checked by x-ray with contrast.

I’m tagging @lfitz and @walisky who are familiar with GJ tubes and may have some thoughts or helpful tips, may know others who have advice. If you are comfortable, it may help to share what led you to need a GJ placed. You mention dysmotility possibly related to your dysautonomia and/or lupus.

For clarification, you do have both dysautonomia and lupus? How long have you been dealing with symptoms?

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