My Gastroparesis Story

In 2023 I was struck by the same terrible disease you might be suffering with right now, gastroparesis.

I’ve suffered from mild stomach issues for a lot of my life – namely IBS and acid reflux, but nothing compared to the shocker that gastroparesis gave me when it popped up in my life.

In fact, I’ve had a lot of medical issues – a thyroid cancer scare, a sinus cancer scare that required surgery, broken bones, metal in my eye, but oh wow – gastroparesis was tougher than all of them.

It started way back in March of 2023. My fiance and I live in a really small town, and she is VERY involved with community events. Long story short, she was involved in a bingo game at our local community center, and came home with COVID. We quarantined in separate rooms, but as luck would have it, I ended up getting it from her – perhaps even before she knew that she had it.

COVID itself was not that bad for me. It was no fun, but I missed my fiance so much that I almost didn’t mind getting it, because it meant we could finally spend time with each other instead of being separate. During COVID I experienced no GI issues whatsoever – no nausea, no vomiting. Although my appetite wasn’t the greatest, I ate a normal amount without any fear.

Then, the exact same day that my COVID symptoms began letting up, I began experiencing GI issues. They hit hard, and they hit fast.

It didn’t seem to matter what I ate. Within minutes I’d feel sick to my stomach, trying not to throw up for at least an hour afterwards. I’d tell myself after an hour it was okay for me to lay down, and that would help. Remember, I had bad acid reflux, so laying down after meals was a big no-no.

At the time I had bad emetophobia, or fear of vomiting. And it was terrible. I had been living with emetophobia for 10 years and rarely left the house without nausea medication. Right before I developed COVID, I actually did end up throwing up once, and it wasn’t nearly as bad as I thought it was. This actually ended up being a huge blessing in disguise, because despite the fact that I had extreme anxiety when I’d feel nauseous, my anxiety was a LOT lower than it would have been if I had never gotten sick.

Anyway, this is what my life turned into. I’d wake up, and get super anxious because I knew I had to eat breakfast. My breakfast consisted of just 5 saltine crackers. 5 saltine crackers is what I lived off of for about 3 months.

I’d eat the 5 crackers, panic to try not to throw up, and then spend the rest of the day laying in bed being miserable. In the evenings, at first, I tried to eat 5 saltine crackers too, but eventually it was too much. So, for dinner, I’d try to drink half of a Vitamin Water. I’d long for sleep just so I could not suffer for a little while.

As you might expect, I dropped a lot of weight quickly. In just over 2 months, I dropped from about 205 down to about 140. I was slowly dying of malnutrition and starvation because I just couldn’t eat. As time went on I tried some snacks, and even ate a little better for a while – but then I’d eat a bad food, and it was like all my progress reset.

My doctor finally prescribed me from Zofran and some Reglan, and this was before diagnosis. Zofran helped a little, and Reglan made me worse. This is counterintuitive, since it’s a gastroparesis medication, and well, I had gastroparesis – just undiagnosed at the time.

This was my reality for months and months.

Part 2: The Diagnosis

Getting diagnosed, for many gastroparesis patients, is not always a quick or smooth process. Once I started talking with other gastroparesis patients, I learned that I was actually quite lucky. Some people go undiagnosed and without treatment for years before they finally have answers.

First up on my diagnosis journey was an endoscopy and colonoscopy. This is pretty standard. As soon as you start having GI issues, they’ll want to stick a camera down your throat and up your butt so they can see what’s going on.

Some people actually get diagnosed with gastroparesis during the endoscopy. If they send a camera down and still see undigested food even though you stopped eating the day before, they know that there’s a problem. I’ll talk more about how gastroparesis is diagnosed in another video but just know an endoscopy can diagnose gastroparesis.

For better or worse, both my endoscopy and my colonoscopy came up clear. In some ways, this was devastating for me at the time. I was desperate for answers, I wanted to know that there was an end in sight for this suffering I was going through. I just wanted them to tell me that I had a problem, that they could fix it, and my life would go back to normal. In fact, the surgeon told me as I was coming out of the procedure that he ‘thinks he knows why I’ve been getting so sick.’ After two weeks of hope waiting for the report, I found out that procedure gave me no answers. I was devastated.

Next they wanted me to do a barium swallow. Since I was getting nauseous after I ate, they assumed it might be related to my acid reflux. I was super worried about throwing up, but was also prescribed Compazine by this point. The barium swallow wasn’t pleasant, but I made it through. Once again, no answers.I later met back up with the doctor who told me that there unfortunately wasn’t anything more they could do for me. This threw me into a hysterical fit and I cried harder than I had in years on the 45 minute drive home.

I was referred to GI specialists, who had a 4 month wait. Still, I was eating almost nothing and panicking every time I had to eat. During a checkup, I had a severe panic attack at the office and was hospitalized due to my heart rate being dangerously high. They ran a bunch of tests, including a CT scan of my abdomen, and found nothing.

At the next doctor visit, my doctor asked me about my hospitalization and we discussed test results. To calm me down, they gave me Ativan at the emergency room. He asked me how it affected me, and I told him that it helped. He agreed to prescribe a benzo – Klonopin, to help with my anxiety, as we already tried several SSRIs that gave me bad sad effects. I understand the dangers of benzos, but at the time, that Klonopin prescription may have saved my life.

(It turns out, getting hospitalized and taking it with good effects helped get it prescribed.)

Over the next month I began dabbing with actually eating food again. This would consist mostly of small snacks – small amounts of smoothies, and top ramen. Still, I wanted SOME answers, no matter what I had to do to get them.

I later asked my doctor to refer me to get tested for food allergies. I live in a rural area, so it’s a 5 hour round trip to get to the nearest medical clinic that does non-routine procedures.

I was extremely lucky that my doctor contacted the GI I was referred to, and asked if he had any slots since I was traveling there anyway. I ended up getting the allergy test done – which came up clear, and talking with the GI for the first time. He ordered an abdominal ultrasound, a HIDA scan to check my gallbladder function, and the gastric emptying study – the study that tests for gastroparesis.

The ultrasound happened, and I found out I have stones and sludge in my gallbladder. Which, we found out, probably came from losing a lot of weight very quickly.

Then the gastric empty study was done. The day of the test, I loaded up on anti nausea meds, and swallowed the radioactive eggs. The person mentioned that nothing seemed to be moving.

A few days later, boom. 38% retention at 4 hours. Severe gastroparesis.

I had answers, but I was hoping for anything but this. Throwing up was my biggest fear, and gastroparesis patients, I had researched, throw up a lot. Not good.

I ended up depressed and didn’t handle it well. But, I got gastroparesis from COVID. I was a postviral case. There was hope for me.

Shortly after, I had my HIDA scan and found out that my gallbladder is not functioning as well as it should be. I remember thinking to myself, “Great. I have what might actually end up being a temporary issue, but will have to get my gallbladder up. Some people develop gastroparesis after gallbladder surgery, so now this temporary condition might end up being permanent.”

Despite what the internet says, the surgeon I met up for that recommended against getting it removed, at least right now. And it turns out that it wasn’t really contributing to my nausea anyway.

So, there was my somewhat windy road to a gastroparesis diagnosis. 5 or so tests, a hospitalization, several disappointments, but after about 4 months, I had an answer. In hindsight, I’m actually grateful that it happened as quickly as it did, but boy did each day feel like it lasted forever.

Part 3: The Road To Recovery

I must reiterate that I am one of the lucky ones. Postviral gastroparesis is one of the only types that frequently recover completely. And although that hasn’t happened for me, I did follow the same pattern many postviral cases do – it started out really bad, and then got better over time.

I ended up enrolling in cognitive behavioral therapy to better cope with the disease, and exposure therapy to help overcome my fear of vomiting, which has been incredibly effective.

Over time, I slowly started setting goals and targets for myself. First, it was to try a new food, eating more to stop the weight loss. Then, it was trying the same foods again without being on either Zofran or Compazine. Then, it was trying food without either medication. Today, I still take medications during flares, but the majority of the time I am completely off both nausea medications. The therapy has been so helpful for me that I am in the process of tapering off Klonopin as well, as my anxiety isn’t anywhere near what it used to be – even when I do get nauseous.

I ended up fighting for a referral to a motility specialist, who I saw in January of 2024. It was a very long wait, but by the time the appointment rolled around, I was doing a lot better. She put together a comprehensive plan if my symptoms get worse, and I no longer fear for the future.

I kinda wanted this post to serve as an introduction to my website, as I now want to pass on a lot of what I’ve learned to you. I see so many of the same questions asked over and over again in gastroparesis support groups, and I know there is just not a whole lot of information available. Heck, even my GI doctors gave me a lot of information that was just flat out wrong, and although I am not a doctor, I am very well versed with the disease – and how people like you and I suffer through it.

So, if you have gastroparesis or know somebody that does, I ask just two things of you:

First, subscribe to the channel by clicking the button below this video. I plan to upload about once a week, at least for a while, and will do everything I can to help you thrive despite having this terrible disease.

I’ve put together sort of a ‘cheat sheet’ that has my 5 biggest actionable tips to help you decrease your suffering, and develop a treatment plan with your doctors that will actually help. You can get it by clicking here.

If you have ANY questions at all about gastroparesis, my story, or anything else, ask them below and I’ll get back to you as soon as I can. This disease can be so isolating and lonely, and I want to be there with you as we go through it together.

Thanks for listening to my story, and I sincerely hope life gets better for you soon, too.