In case you’ve been living under a rock and missed the hype, Ozempic is an injectable diabetes drug that’s become popular as an off-label medication for weight loss. It mimics GLP-1, a naturally occurring hormone, to suppress appetite and delay the passage of food in the stomach, making many feel fuller after eating less.
Even if I wanted to, I couldn’t take drugs like Ozempic because I have a stomach condition called gastroparesis, also known as paralysis of the stomach. Recently, media outlets have reported that in rare instances, taking these drugs might be linked to the development of gastroparesis.
Unless you’re related to me, you’ve probably never heard of the condition, but gastroparesis is thought to affect about 10 men and 40 women out of 100,000 people. In addition to nausea and vomiting, the condition also causes gas, acid reflux, distension and other equally fun symptoms. As my gastroenterologist explained it to me, the muscles in the stomach react too slowly in people with gastroparesis, causing food to sit there until it starts to ferment. The resulting symptoms, particularly the severe nausea and vomiting, mean that eating will be the last thing on your mind.
But no matter how much weight you may lose, you do not want gastroparesis.
My condition is officially listed as idiopathic — that is, it has no known cause. In the spring of 2015, I started to feel nauseous all the time. After months of morning sickness-like nausea and vomiting, followed by a misdiagnosis and an unnecessary surgery to remove my gallbladder, my gastroenterologist mentioned an unusual medical condition that could only be diagnosed with a special test at the hospital.
For the radioisotope gastric-emptying test, I had to ingest egg salad containing a small amount of tasteless radioactive material that allowed a mini camera to follow the food through my digestive system. Scans of my stomach were then taken over several hours. Afterward, it was official: I was diagnosed with gastroparesis.
Another reason why you don’t want gastroparesis? There is no cure. Ondansetron, the drug of choice for the nausea, does nothing for me. The preferred drug for delayed stomach emptying, domperidone, was available in the U.S. when I first developed the condition but I now have to get it from Canada. And the cost of domperidone, about $1,000 annually, is not picked up by insurance. I also have to take pantoprazole and sucralfate, twice a day each, to prevent painful acid reflux and ulcers.
There are surgical treatments like one I had last year at a gastroparesis clinic in Ohio to help manage symptoms, but again, they are not a cure.
Though some cases of gastroparesis do go away on their own, the longer you’ve had the condition, the greater the likelihood that it won’t. Gastroparesis is not life-threatening, but it has definitely been life-altering for me, as any chronic medical condition can be. It literally affects every aspect of my life; I never know when I will wake up feeling nauseous, so having to cancel plans is an unfortunate side effect of gastroparesis.
The best way for me to manage the condition is by being hypervigilant about what I eat and drastically limiting fiber and fats. No meat, no more fresh veggies or most fruits, no lettuce, and no oil or fried foods that slow down digestion.
I eat lots of small, bland meals and I am constantly monitoring my symptoms. If I don’t eat enough, I get nauseous. If I eat too much, I get nauseous. If I eat something that actually tastes good, I will probably get nauseous. I am afraid to try a dish when when I don’t know exactly what’s in it, since accidentally eating a food that’s isn’t “safe” can lead to extreme nausea that has me curled up in the fetal position for days.
I often bring my own food when I travel, even for a day, and I am always thinking ahead about my meal options. I always carry my meds, as well as snacks that don’t require refrigeration, like oyster crackers, saltines and mints. Big events like weddings can be particularly challenging; I’ve had to sneak away to eat my yogurt or plain turkey wrap, which I bring in an insulated lunch bag. I carry a plastic bowl in my car, just like I did when I was pregnant, in case I have to vomit. In short, I am never not thinking about gastroparesis or worrying about its potential symptoms.
Dining out also presents challenges. Often, the server doesn’t understand the severity of my condition or thinks I’m just counting calories when I ask for my food to be prepared with minimal oil or no butter. Once at a Greek restaurant, the server chastised me in front of a group of friends, saying that they could not prepare my food the way I requested because it wouldn’t taste good. I had tears of frustration and embarrassment in my eyes even after I sought out the manager, who was able to steam fish and vegetables for me without a problem.
Finally, having gastroparesis has played havoc with my emotional state. Living with nausea is to me — and many others — as bad as living with acute pain. When I am lying in bed waiting for an acute flare-up of nausea to subside, I feel so depressed that I can’t help wondering if I can continue to live this way.
I’m not saying Ozempic and similar drugs should be banned for their off-label weight loss use. But please go in with your eyes open and be aware of the potential side effects. I have been suffering from gastroparesis for close to a decade — and trust me, no amount of weight loss is worth it.
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