Lately, my body has been struggling in ways I never thought possible. Eating : something so simple and necessary: has become one of my biggest challenges. People take the most simplest things for granted. (or wish they could eat less) Severe bloating, delayed emptying, early satiety (feeling full too quickly), regurgitation, and unrelenting GI pressure have made it nearly impossible to get enough calories.
The official word for this is “gastroparesis”
a condition where the stomach empties far too slowly, almost like it’s paralyzed. I’m in the early stages, but it has been worsening over the last month. At one point, I had worked so hard to gain up to 105 pounds, which felt like such a victory. But the cost was daily vomiting. Now, eating has become even more difficult. Some days I barely reach 700 calories, and the fallout has been brutal: relentless fatigue, weakness, and weight loss.
The Bigger Picture
Through months of testing and conversations with my doctors, we’re uncovering the deeper story behind what’s going on.
- This didn’t start with EoE. My eosinophilic esophagitis is more of a secondary finding not the root cause.
- The real beginning may have been years ago, when I had to restrict my diet due to GI symptoms. That long-term under-eating left me with chronically low insulin levels. Today, I wear a continuous glucose monitor (CGM) to track my blood sugar because I was developing features of Type 1 diabetes. (One of the diagrams I’ve shared shows how GLP-1 and insulin tie into this picture.)
And, that my food will sit in stomach all day, and then I’ll take a Reglan with my dinner and motility will start. My BS will show it is digesting. Weird!! and Crazy! …interesting too. (and a relief)
- Over time, my small intestine likely developed partial blockages and reduced motility, which explains that “stuck” sensation? …food just won’t move through as it should.
- Mycotoxin exposure and immune activation piled on top of all this, adding layers of inflammation, fatigue, and weakness. Thankfully, that piece has mostly resolved.
So, while EoE is still present, it’s not the core problem. The true drivers are:
- Long-term malnutrition from food restriction,
- Motility breakdown, and
- (Maybe? the toxic load I’ve carried along the way.
FLIPPING THE SCRIPT!!
On October 6th, I’m scheduled for an endoscopy with EndoFLIP a diagnostic test I’m actually excited about.
Here’s how it works:
- Catheter placement – A thin catheter with a balloon at the tip is placed into the esophagus and stomach.
- Controlled balloon filling – The balloon inflates in a very controlled way, while sensors inside measure what’s happening.
- Recording and evaluation – The device captures real-time data on motility, pressure, and distensibility (how well the tissue stretches).
This will help my doctors see if my symptoms are being driven more by:
- a mechanical blockage (something physically obstructing flow),
- motility failure (muscles and nerves not working properly),
- or both.
It’s an incredibly important step, because the results will guide treatment moving forward.
Where I Am Right Now
At the moment, my days look very different than they used to. My focus is simply on stabilizing:
- Eating whatever and whenever I can tolerate ( the goal is to rebuild calories, not chase perfection).
- Resting more than I ever have (and learning to accept that). (EEK!..so hard)
- Using enzymes and motility support only when necessary.
- Working closely with one of my doctors, who actually visits me at home every Saturday.
The ultimate goal? Regain weight and strength. For now, my target is to get back to 105 lbs (and more!) and stay there without constant setbacks.
I’ve come to realize that healing isn’t just about chasing one diagnosis; it’s about piecing together a complicated puzzle of causes, effects, and hidden layers. Gastroparesis may be one of the toughest chapters yet, but with each test and treatment, we’re uncovering more of the truth.
And truth, I’ve learned, is the another step toward healing. thank you Jesus for being WITH ME always. Thank you, Doug for BEING MY ROCK. Thank you, Tatum for being my joy daily (and my rock as well). I love you all to pieces.