Picture the worst stomach flu you’ve ever had. Imagine the nausea, how awful you felt, how you couldn’t keep any food down. Now, imagine that feeling never ever went way. You thought you just had a flu but you never got better. That’s what it’s like living with gastroparesis.

Out of the handful of diagnoses I’ve received, this bad-boy is probably the most frustrating one. It affects your digestive tract, making it hard to eating. Eating and nutrition is a huge part of life, both socially and physically so, having an illness that affects that, is most definitely life changing.

August is gastroparesis awareness month so I want to do my part and spread a little knowledge about this green monster. First off, I think it’s important to understand the basics so here we go!

What is gastroparesis?

The name literally translates to paralyzed stomach. Commonly, people’s stomach aren’t completely paralyzed (usually they’ll classify that as Digestive Tract Failure) but they empty much slower than normal, taking hours or days longer than those with a normal gastric emptying. That means that, rather than food moving out of your stomach completely in about 4 hours, the food sits and festers there much longer which makes you feel pretty awful! Gastroparesis can sometimes be thought of more as a symptom than an illness, indicating there is something else going on (like in my case, EDS). In some cases, gastroparesis is the illness.

What causes gastroparesis?

There’s so many different causes! Diabetes is the most common. After that, the second most common cause is “idiopathic” which translates to: your stomach doesn’t work and we don’t know why. It can also be post-surgical or post-viral or caused by a medication. Within the long list of causes is also a ton of auto-immune diseases (like lupus), genetic conditions (like mitochondrial disease), connective tissue disorders (like Ehlers-Danlos Syndrome), and forms of dysautonomia (like Postural Orthostatic Tachycardia Syndrome) that can cause gastroparesis. This list seems to be growing continually as they find more conditions that are co-morbid (meaning they occur together) with gastroparesis.

How does gastroparesis make you feel?

So. much. nausea. That is probably the worst and most persistent symptom I have. It can also cause vomiting, weight loss or gain, malnutrition, and stomach pain among other things. Like any illness, it affects everyone differently, but these are what people most commonly experience. For me, it’s taken away my ability to eat without feeling absolutely awful. It also affects my bowels which leads to some other fun issues!

How do they test for it?

The golden standard is the Gastric Emptying Study. Essentially, what you need to do is eat food with some radioactive tracers and they scan your stomach every so often for 90 minutes to 4 hours, depending on the test, to see how quickly the food empties into your small bowel. Sometimes, it can be diagnosed through an endoscopy if they find leftover food in your stomach after fasting for the scope, though typically they do a GES to confirm. A new technology that some are using now is the smart pill capsule endoscopy; you swallow a small camera that goes all through you digestive tract!

Is there a cure?

Unfortunately no, and there is only a handful of drugs that can be used to help treat it. For some people with post-viral gastroparesis, it can, however, get better and even resolve itself over time. There’s two different types of medication used for GP: pro-kinetics (that are supposed to help speed up your emptying time) and anti-emetics (that are to help nausea and vomiting). In the pro-kinetic class, there’s really only 2 different kinds, both with serious potential side effects. Awesome! If the medications don’t work and you still can’t eat enough, that’s when they consider a feeding tube or a gastric stimulator. Sadly, even the stimulator isn’t a cure as the success rate isn’t very great and, for those who find relief from it, it only helps their nausea and vomiting, it doesn’t help them eat.