Weight Gain with Gastroparesis: A Catch-22 Situation

I’m no stranger to having to restore weight. In the various eating disorder treatment facilities I was in as an adolescent, restoration typically involved consuming thirty-five-hundred calories a day of high-fat, calorie-dense foods: milkshakes, protein bars, rich pasta dishes, desserts that sent my mind into a full-blown panic. Worse than the food itself were the GI symptoms that often accompanied these periods of rapid weight gain, namely bloating, fullness, and constipation.

Suffice to say, weight restoration was one, of many, unpleasant experiences related to my eating disorder that I hoped to put behind me in recovery. For the five years that followed my last relapse, during my freshman year of college, I succeeded in my objective. And then came the summer of 2024, which marked the beginning of my struggles with chronic illness. As my health–physical as well as mental–declined, my appetite subsided and all the muscle I’d put on from two years of regular running and swimming disappeared in a matter of weeks.

I didn’t realize the extent of my weight loss until I met with my dietitian in early September. Although I was still in a healthy range for my height, that I’d lost fifteen pounds in fewer than three months was alarming, and I resolved to up my intake posthaste so as not to lose any more. This seemingly straightforward plan proved to be more complicated than anticipated, however, when even a subtle increase in food yielded a slew of uncomfortable GI symptoms unlike any I’d ever experienced before.

Nothing–not FODMAP, gluten-free, probiotics, ginger chews, etcetera–seemed to make a difference; the only thing that alleviated my discomfort was not eating, which, of course, wasn’t an option. In January, I was diagnosed with Ehlers-Danlos Syndrome, after which the possibly of gastroparesis–a condition that prevents the stomach from properly emptying and is a common comorbidity of EDS–was first proposed.

Fast forward to March, and sure enough, the results of my gastric emptying study revealed mild delayed gastric emptying. By that point, I was managing to maintain a barely-normal weight by eating small, frequent meals of mostly soft and liquid foods; reducing my fiber intake as per the guidelines of the gastroparesis diet helped to further alleviate symptoms of bloating and nausea.

Unfortunately, weight gain remained a struggle; each time I’d try to push the calories, I’d become deterred by a feeling of fullness akin to that of just having consumed an enormous Thanksgiving dinner. Not only did the intense abdominal discomfort make it so that I was unable to focus on anything else; my body image tanked and mealtimes once again became a source of anxiety; this time around, however, the worry was not how food would make me look but how it’d make me feel.

Inevitably, and after only a few days of forcing myself to eat more, I’d return to an amount of food that, while not comfortable, felt at least tolerable. I knew I needed to gain weight–and I genuinely wanted to; I still do–but the ten pounds that my dietitian and I had agreed upon seemed increasingly unattainable, and so long as I was in a technically normal range, I could convince myself that it wasn’t all that urgent.

This past month, however, that’s changed. In a frustrating repeat of last summer, the arrival of the warmer weather did a number on my body, and I spent most of May in a debilitating POTS flare, only to be hit with a week of the worst joint pain of my life just as I was coming out of the former. My stomach too suffered a blow; whether connected to or independent from the pain in the rest of my body, I’ve struggled with worse-than-usual fullness and nausea in recent weeks, resulting in a worrying weight loss of five pounds. For the first time since college, I’m medically underweight, and the prospect of sliding further down this hole that I’m trying so hard to crawl out of has weighed–literally–on my mind in the days since.

Now that my perception of myself is no longer distorted by body dysmorphia, as it was in my teens, and now that my goals are entirely unrelated to my weight and body size, I despise the thinness of my face and how scrawny and unathletic my legs look in shorts. Furthermore, I despise how frail and fatigued I feel at my young age and miss the strong body that enabled me to run six miles or swim two-and-a-half and the sharp, alert mind that endlessly spun with creativity. I miss feeling like me.

As in my long-ago treatment days, the “fix,” so to speak, is elusively easy: eat more food. But whereas at one point my mind’s obstinacy was the largest obstacle facing weight restoration, now it’s my body’s inability to properly digest food. It’s not as simple as mind over matter–if it were, I’d have put on the weight months ago; it’s a daily struggle of balancing adequate–or, in this case, above adequate–nutrition with symptom management so that I don’t end up in a flare that will set me even further back than I already am. It’s finding ways to sneak in a few extra calories here and there–avocado in my smoothies; vegan butter in my mashed potatoes–and hoping it will add up overtime. It’s meticulously recording my meals in my food diary in order to identify triggers and stay on top of my bowel movements and fluid intake. In other words, it’s a full-time job.

Increasingly, I feel like I’m trapped in a catch-22 situation: I need to eat more to feel better, but eating more makes me feel worse. Still, as I sit here writing this in the company of a half-empty pint of vegan ice cream and the beginnings of a stomachache, I’m determined to give it my best shot, not only because the alternatives aren’t particularly pleasant but so that I can feel stronger physically and mentally. One bite–or spoonful–at a time, I’m determined to eat my way back to health.