I had extreme nausea all the time! Discover the signs of gastroparesis

In this video I take your through my 15 year journey to get a diagnosis for the extreme nausea I had that caused me to not be able to eat. It was a really difficult time, and still is, but I hope this video can help others who may be in the same position.

In this video I take you through my journey to diagnosis of gastroparesis.

Below is a transcript of the video above if you prefer to read it:

00:00:00:04 – 00:00:23:16

Hello, I’m Victoria. And today we’re going to talk about Gastroparesis. I’m going to tell you what it is, what symptoms I had, and what sort of treatment options were available for me. I’m going to give you the patient perspective because that’s where I’m coming from. I’m not a medical professional. I just want to tell you a little bit about my Gastroparesis story.

00:00:24:09 – 00:00:48:17

Here we go. So I have a vivid memory from when I was 12 years old. It was the first time that my mom had ever taken me to the Cheesecake Factory. We hadn’t eaten hours, and I was really excited because the menu was humongous, and I decided to order a dish that had some fried chicken with gravy and mashed potatoes.

00:00:48:21 – 00:01:23:10

Mashed potatoes? My absolute favorite. When the waiter brought the dish out and set it in front of me, I was super excited because I was really hungry. I took one bite and all of a sudden I felt full. It was odd. It was like I had eaten an entire Christmas dinner in that one bite. I started to feel nauseated and just didn’t really feel like I could eat any more of this meal, even though I knew I was really hungry.

00:01:23:23 – 00:01:48:09

I said to my mom, I feel awful after having one or two bites of food. She looked really confused, just as confused as I was. And she said, That’s weird. I tried to continue eating the meal, but I just felt so incredibly nauseated and full that I simply couldn’t finish it. It was a memory that was cemented in the mind of mine and my mom’s.

00:01:49:00 – 00:02:20:14

It was such an odd experience to be extremely hungry and then immediately full. So that was the start of my Gastroparesis journey, and it took me 15 more years to get diagnosed. Gastroparesis is a medical condition that affects my stomach’s ability to empty its contents properly. My stomach has impaired or delayed gastric emptying. The muscles don’t function properly, so the food just kind of sits there.

00:02:20:26 – 00:02:46:02

So after that first odd experience at age 12, I had a very few symptoms. It wasn’t really all that bad. It wasn’t as terrible as it eventually became. I was also dealing with another medical issue in the background. So even if I did have really bad symptoms from Gastroparesis, they were definitely not the top of the list.

00:02:46:02 – 00:03:13:14

First thing on my mind and because of that, I decided to kind of wait and hold off on that because I really needed a diagnosis for this other condition that I was suffering. And I’ll do a video on that some other time. By age 16, I started having really severe symptoms. I remember it was the day before I was supposed to go back to school.

00:03:13:22 – 00:03:43:24

We had had pizza the night before, and I love pizza, and pizza was so delicious. And I remember thinking that day, oh, goodness, I want to go to the refrigerator and I want to get that piece of pizza that I didn’t have last night. And I remember getting the pizza, heating it up, and then again, not feeling hungry after having a bite of food and then started the extreme nausea that did not stop for years.

00:03:44:04 – 00:04:12:18

Every day, day in, day out. I had extreme nausea no matter what I ate. I lost an extremely large amount of weight within that first year of the Gastroparesis really kicking up and significantly affecting every single day of my life. I was basically living off of bread and water, and I was still going to high school every single day.

00:04:13:10 – 00:04:40:10

I started being asked by doctors and family members if something was going on because they thought that I might have an eating disorder, and that was the furthest from the truth. I just really wanted to eat food. I loved food. I was the kid that just loved food. I absolutely adore potatoes. I absolutely love bread. And I love to be able to indulge in those things.

00:04:40:10 – 00:05:03:21

And I was not able to eat at all. I was eating enough to sustain me a little bit throughout the day when I was going to school. But for the most part, I was primarily operating on an empty stomach simply because that’s what made me feel better. So finally it kind of came to the point where I had to seek out help from a gastroenterologist.

00:05:03:27 – 00:05:37:04

This is significantly impacting my life. So I went to a gastroenterologist, pediatric gastroenterologist. He did test. He asked me about my symptoms. So I had to do an endoscopy, which is where they take a camera at the end of a little hose and put it down your throat. When you are under anesthesia. I also had to do a capsule pill test, which is where they give you a pill that’s about the size of a large vitamin that has a tiny little camera in it.

00:05:37:11 – 00:06:14:18

You swallow it and then they take pictures every couple seconds as it goes through the digestive tract. And then they analyze that and see if anything is potentially wrong. What that gastroenterologist eventually ended up finding was absolutely nothing, which is not unusual considering the types of tests that he did. None of those would really capture gastroparesis necessarily. Sometimes people have gastroparesis so bad that when you do the endoscopy you can see food in their stomach.

00:06:15:00 – 00:06:39:24

I didn’t have it that bad. The symptoms were just absolutely terrible. So the doctor ended up diagnosing me with IBS, with stomach involvement, which is not a thing. And I remember telling physicians that after I was diagnosed with it and they were super confused because IBS never involves the stomach. So why was a doctor diagnosing me with that?

00:06:40:02 – 00:07:06:28

But it was all that I had to go off of at the time that physician recommended that I up my fiber intake and come back and see him in a couple of months and see how I was feeling. I upped my fiber content and started to have some of the most extreme symptoms I ever had with the nausea, the constipation and the inability to continue to eat food.

00:07:07:05 – 00:07:35:03

And I told him this and he said, Well, you’re just doing it wrong. Well, come to find out. A lot of times Gastroparesis patients cannot handle high fiber diets. So I was doing the exact opposite of what I should have done because I wasn’t diagnosed properly at age 16. So fast forward a couple more years. At about age 19, I was diagnosed with an unrelated autoimmune disease.

00:07:35:22 – 00:08:05:14

At that time, they put me on an immunosuppressant medication. They put me on steroids. I was on many other medications and all of them started to make me gain weight. The Gastroparesis symptoms got better to the point where it wasn’t impact eating every single day of my life significantly. I wasn’t losing weight. I was able to go to college and do all the things that college kids do.

00:08:05:20 – 00:08:38:22

But after getting out of college, marrying my lovely husband and starting in the work force after working for a nonprofit organization at age 27, I started having massive panic attacks at work, at home and my Gastroparesis symptoms returned like no other time in my life. I started having extreme nausea and I was feeling so full. Any time I ate anything.

00:08:39:06 – 00:09:04:26

I remember many times I would go to work with a completely empty stomach and would come home and eat a couple of rolls, and that was it. I started to lose weight very, very fast. At that point, a lot of medical things were happening. I was completely wrought with anxiety. And so I decided to quit my position and just go to contract fighting.

00:09:04:27 – 00:09:26:23

At that time, I also happened to have a physician I was seeing for nutrition help because I had needed to lose weight for a really long time. And when I started telling her the symptoms, she said, Oh, you got to go see this one particular physician, because I think I know what you have, but he needs to see you.

00:09:27:03 – 00:09:59:06

So she recommended a really good gastroenterologist, and I went and saw that gastroenterologist started explaining my symptoms, and he immediately said the words, I think you have gastroparesis, but we need to do a test to find out. That was the first time I’d ever heard about Gastroparesis. So that was interesting to me. I had done so much research about different medical conditions that it could possibly be, and at that time Gastroparesis was not one of the ones that was constantly popping up.

00:09:59:19 – 00:10:35:28

I do want to pause because I know some of you are like, Hmm, maybe I have gastroparesis because I know that watching a lot of different content online is super helpful in potentially getting to your diagnosis, even if the thing that you’re learning about is not necessarily your diagnosis. So some of the symptoms of gastroparesis are nausea, vomiting, feeling full after just a couple bites of food, bloating, weight loss, abdominal pain, acid reflux, and sometimes instead of people losing weight, they can gain weight.

00:10:35:29 – 00:11:01:11

So if you have any of those symptoms and you’re really plagued by them, I would highly recommend going to a board certified gastroenterologist. So back to the story. The gastroenterologist set me up with something called a gastric emptying scan. Basically, you go in for this test they have you eat a sandwich that is laced with some radioactive isotopes that they can track via equipment.

00:11:01:11 – 00:11:41:23

And you digest this meal while they track how much of it stays in your stomach. At the time that I was diagnosed. After 4 hours of this study, 95% of the food remained in my stomach. An average individual has the majority of food gone after 4 hours. I definitely had Gastroparesis and that test proved it. After having the gastric emptying scan, I was just floored simply because to get to that particular test I had been through multiple small bowel follow throughs endoscopies colonoscopies

00:11:41:23 – 00:12:08:10

and that capsule pill test. At no point in time was that a test that any physician thought to order. And it was one of the simplest tests that I have ever had done. After following up with the gastroenterologist, he confirmed I had Gastroparesis, which was exciting because I had waited so long for this diagnosis. But my other question is, well, why do I have this?

00:12:08:20 – 00:12:42:02

Unfortunately, they couldn’t really tell me that there’s a lot of different potential causes for Gastroparesis. There could be injury to the vagus nerve. You could have uncontrolled diabetes. You could have prior surgery involving the stomach or esophagus. Certain medications can cause a viral illness, can trigger it. Neurologic disorders, genetic conditions, autoimmune diseases. Mine was idiopathic. Meaning we have absolutely no idea why you have it.

00:12:42:02 – 00:13:00:05

But we do know that you do have it. So, of course, I wanted treatment right away. I was curious, what are the treatment options for this particular thing? Because I can’t continue living off of a couple crackers or rolls of bread every single day and some water that’s not going to cut it for the rest of my life.

00:13:00:22 – 00:13:32:19

But I was really sad to hear that there were very few treatment options available. So treatments for Gastroparesis can be things like Antiemetics, which are anti-nausea medications. That’s just a fancy word for it, like Zofran or scopolamine or pro kinetic pills like Reglan or Domperidone, but Domperidone’s not available in the United States except for a very minor few that go through a specialized program that the FDA has.

00:13:32:27 – 00:14:12:15

Even antibiotics like erythromycin can have pro kinetic properties. And so in very difficult times that patients have. Sometimes physicians will prescribe that as well. More recently, some physicians are starting to utilize medications that are designed aimed to help chronic constipation like LINZESS or Motegrity. Some people can be candidates for the gastric neuro stimulator, which is a device that’s implanted underneath the skin, and little electrodes are put to the stomach that kind of interrupt the signals so that you’re not feeling as symptomatic.

00:14:12:16 – 00:14:37:09

It can be extremely helpful in those people that it helps, but it doesn’t help everyone and not everyone’s a candidate. Some people end up needing a feeding to either a feeding tube that’s put through the nose and down the esophagus called an NJ tube or a PEG or PEJ to which either goes through the abdominal wall, into the stomach or the intestines.

00:14:37:14 – 00:15:19:08

But not all patients with gastroparesis will need those things. There are just treatment options that are potentially available. The number one thing that I was told by my gastroenterologist and have subsequently been told by like every freaking gastroenterologist I’ve ever interacted with, as well as other medical professionals that find out I have Gastroparesis is diet. A lot of gastroparesis patients can benefit from a diet that is low fat, low fiber that has pureed food as an option because you are pre digesting the food by breaking up the food particles into tiny little pieces.

00:15:19:15 – 00:15:45:22

But not all of my symptoms are going away with just changing my diet because I’ve tried that for a really long time and it’s not 100% effective. Diet alone could actually be an entire other video if you’re interested in that comment down below. So basically, while there are treatment options available, there aren’t a lot of treatment options available.

00:15:45:22 – 00:16:23:25

And as a gastroparesis patient, you do tend to run through them pretty fast and gastroparesis can be severely limiting and we don’t really have a lot of good treatments. I’m optimistic as I keep searching to the horizon to see all of these different medications that manufacturers are now trying to get into clinical trials for Gastroparesis. But I’m still left as a Gastroparesis patient wondering how am I supposed to survive my day to day life when the medication options are not all that great?

00:16:24:10 – 00:16:50:10

So where am I in my gastroparesis journey? I was diagnosed 12 years ago. How am I doing? Am I better? Heck no. The options that are available to me are very limited. I’ve run through a lot of medications. I have to take an anti-nausea pill three times a day. My diet is severely limited and I have a lot of nutritional deficiencies because of it.

00:16:50:28 – 00:17:17:19

There are periods in the past 12 years that I have been able to do more, eat more, feel better, but it’s few and far between. I primarily stay at home. I can’t go out to dinner with friends. I can’t eat popcorn in the movie theater. I simply go to parties and enjoy people’s company. I don’t get to partake in that potluck anymore.

00:17:17:28 – 00:17:45:25

And if you’re also one of those people, I 100% feel you. It’s incredibly difficult to have Gastroparesis, especially in a world where people celebrate through food all the time. I really want to partake in that, and I’m hoping that one day the treatment options will expand and or my gastroparesis symptoms will diminish, and I’ll be able to. I’ll keep you posted.

00:17:46:09 – 00:18:05:04

I hope you found this video useful. If you did, please give it a like. And I talk about disability and chronic illness related content on this channel. If that’s of interest to you, please consider subscribing. And if you liked this video, I think you’ll like this one next. Thanks. And I’ll see you next time.