Hey everyone! My partner began having symptoms of gastroparesis in 2010 (and was ultimately diagnosed with it about three years later), and neither of us know anyone else who has it. I was hoping I could ask you all some basic questions so I could get a better idea of their gastroparesis versus everyone else's on a whole.

Part of the reason I'm doing this is because I've always, deep down, been just a tiny bit skeptical of the diagnosis, and I think that's mostly because they have a significantly less severe "version" of it, if you will. There's no doubt that there's something wrong, but it would be helpful to learn about how others have experienced this condition themselves!

When were you first diagnosed?

My partner (Lo) was diagnosed in 2013, but suffered with the condition since 2010, so at this point they've had it for 1/3 of their life.

How was it determined that you had gastroparesis?

The first couple years we honestly ignored it. They had just started graduate school and were putting their all into it. It wasn't until after school that it got bad enough that we were left with no options but to pursue it.

Lo did a series of tests over the span of half a year with no results, and eventually they discovered that during a gastric emptying test, that it took them 700 minutes for their food to pass from the stomach to the small bowel, whereas it only took a normal person 140 minutes. They immediately declared it was gastroparesis.

Do you have any idea what caused you to have gastroparesis?

The doctors told us that many people often were in some form of accident prior to getting gastroparesis, as it's typically caused by damage to the nerves in the stomach. In Lo's case, there had been no accident or physical damage of any kind, so the cause was never determined.

What were your main symptoms at the time you were diagnosed?

For Lo, it started with general stomach upset after eating certain foods, particularly red or fatty meats. It eventually just became a regular thing where it wasn't uncommon for them to need to vomit at least once a week. But again, they were in grad school and busting their ass, so literally between sleeping, studying, and puking, they had next to no time to pursue it otherwise.

Shortly after grad school, it got a lot worse. They began to get sick almost every time they ate, no matter what it was. During the months of testing leading up to the diagnosis, they were frequently only able to get down meal replacement shakes (like Slimfast) and cottage cheese. It was so bad that they literally lost 30 lbs (~13.6 kg) in just 30 days!

What did you do to begin treating your gastroparesis once you were diagnosed with it? What were the results? Do you use the same methods now?

After the diagnosis, they had a minimally invasive surgery to check for extra scar tissue around the stomach. They expected to find a ton of it, possibly built up from a double hernia repair that Lo had had when they were 9... but it was all clear inside.

After no luck there, they suggested a medication called Reglan (Metoclopramide), which is the only FDA approved drug to aid in gastric emptying. The problem though was that it only seemed to show improvements in about 40% of patients, and 20-40% of patients couldn't even take it at all due to intolerable side effects. One of those side effects, tardive dyskinesia, was ultimately the nail in the coffin for us.

Luckily, there were other options for non-FDA approved drugs out there. We ended up going with 0.5 mg of Resolor (Prucalopride) daily, which we have delivered to us from either Canada or the UK. This medication made it so they could eat again. They can eat essentially anything now without fear of vomiting.

We confirmed with the doctors that if Lo did choose to eat something on the "not recommended for gastroparesis" food list, that it would never cause any kind of permanent or irreversible damage. Once that was cleared up, they'll typically try to eat more "approved" foods, but if we're going out to eat, they usually won't bar any food if it's something they're in the mood for. If they want to eat a steak or a cheeseburger, they will. Of course, they'll definitely suffer the price later though, dealing with everything from stomach pain, gas, severe bloating, and nausea, all to differing extremes depending on what they ate and how much of it.

What were the biggest changes you faced after being diagnosed with gastroparesis?

Once Lo began taking Resolor, they were able to eat almost anything with only an upset stomach to deal with later (no vomiting typically). Because of this, their diet actually changed very little. They'll usually eat whatever they want day to day, and have just grown accustomed to the daily pain and bloating that comes with those decisions.

One thing that did change was how much they could physically consume. Since being diagnosed, they can no longer eat standard sized meals. When eating out, they typically only eat about 1/3 of their meal, then take the leftovers home to have another 1-2 meals with later. This has become the norm. They'll also "graze" frequently throughout the day, eating a piece of candy here or some chips there. Maybe a few bites of yogurt or cottage cheese. Small bits of whatever is lying around.

Do you have any general tips for dealing with stomach pain and bloating?

These are probably the worst symptoms for Lo. They're in varying levels of pain every day, and even when they try to eat just from the "safe list," they don't have much luck. Oftentimes their stomach will bloat out almost comically - they're a completely normal weight and have a flat stomach most of the time, but when they're bloated, it almost looks as if they swallowed a basketball! Nothing seems to help the bloating go away, so they'll lay on their stomach sometimes to ease the pressure and just ride it out.

They spend a noteworthy amount of time on the toilet as well, and they're usually constipated. Even drinking a lot doesn't seem to help this too much though, and we were told that fiber and laxatives both were particularly bad and non-effective for gastroparesis, so we avoid those.

It's come to the point now that almost anything they eat hurts them to some varying degree afterwards. No food is "completely safe." This causes them to frequently "forget" to eat. As their partner, I want to do whatever I can to support them. Every time I cook for them though they still get sick after, no matter what I make, and it's depressing to see them like this.

I want to say that I do understand and acknowledge that most people with gastroparesis have it much worse or to more extreme extents, and we should count ourselves lucky that it's as mild as it is for Lo. That being said, it's still a great hindrance in both of our lives, and if I can reach out to others who have to deal with this, maybe I can find ways to better take care of them and their needs in the long run.

Thank you all SO much for any information, input, advice, or experiences you can share! ♡