Personal Update: Sixteen Years with Gastroparesis
It's now been sixteen years since I was diagnosed with idiopathic gastroparesis. Last I shared, about a year ago now, my symptoms had returned after a year or so of being mostly resolved. That's still the case. Here's a brief rundown of my current experience:
I mostly struggle with reflux and regurgitation, less frequently with mild nausea and stomach pain.
I have flare ups, mostly around my period, where my overall digestion slows, and constipation is more of an issue.
I loosely follow a GP-friendly diet, though I haven't been strict about it in several years. I am currently working on adhering a bit more strictly to the guidelines in Eating for Gastroparesis to help reduce reflux.
Walking remains one of my best symptom management tools.
I'm not taking any medication except for the occasional Pepto Bismol. I do use ginger candies and ginger ale for nausea.
My gastric neurostimulator is still turned off. It's been off for nearly four years now and I don't feel the need to turn it back on, as I no longer struggle with severe nausea. (I do plan to have this removed at some point and when I do, I will share that here as I haven't found much information about it online.)
I haven't had my gastric emptying re-tested to see if it is, in fact, delayed again. (My last two tests in 2018 and 2016 were both normal.) My doctor says we'll probably do that before removing the neurostimulator.
The main thing I want to convey is that while I am still experiencing gastroparesis symptoms, my experience of gastroparesis has changed completely. I'm not afraid of it anymore and that has brought about so much relief. That has mostly come not from managing the symptoms better, but from addressing the emotional side of navigating this condition. (Symptom management is necessary and important, of course. But I've had symptom management under control for many years. The emotional relief was the new piece.)
In the sixteen years since I was diagnosed with gastroparesis, my experience has run the gamut. My weight has fluctuated by 60 pounds. My symptoms have ranged from debilitating to non-existent. I've been on over a dozen medications and no medication at all. I've been underweight, malnourished, and without a period for two years. I've gotten pregnant and carried a healthy baby to term. I've been crippled by anxiety, deep in depression, and I've also been incredibly hopeful. I've felt helpless and I've felt empowered.
So, if there is one single thing I'd like to share with someone who has recently been diagnosed, it's this: things will change. You'll feel better, you'll feel worse, you'll be able to eat more, you'll be able to eat less, you'll feel hopeful, you'll feel defeated, your symptoms may resolve, your symptoms may reappear.
I know the uncertainty of that might feel scary. It was for me at one point. It's easy to focus on the "worse, less, defeated" statements above. But the flip side is "better, more, hopeful." If you're struggling right now, you will not be struggling forever. Your experience today is not your experience tomorrow, next month, or next year. It is possible live WELL with gastroparesis. Sixteen years later, that's truly what I'm doing.