Let me first start this article with a,
"F*ck Gastroparesis."
OK! Now that that is out of the way, let's begin.
It's August! For most people, this month is about last chance breaks before school starts, the summer ending, school starting or something between those lines. For me, it's a special month because it happens to be the month for Gastroparesis Awareness! Most people have never even heard of Gastroparesis before. I mean, I sure hadn't heard about it until I was diagnosed. So here's a brief synopses of what Gastroparesis is, my journey with it and how it has affected my life.
Uh, WTF even is Gastroparesis?
Well, according to the National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK), "Gastroparesis, also called delayed gastric emptying, is a disorder that slows or stops the movement of food from the stomach to the small intestine." Basically, it means that whoever has Gastroparesis can't digest their food like a normal human should. Most cases of Gastroparesis cases are diagnosed without knowing the cause, which sucks. Each case of Gastroparesis affects the body differently, but some common symptoms (according to the NIDDK) are:
- gastroesophageal reflux (GER), also called acid reflux or acid regurgitation — a condition in which stomach contents flow back up into the esophagus.
- pain in the stomach area.
- abdominal bloating.
- lack of appetite.
"The most common symptoms of gastroparesis are nausea, a feeling of fullness after eating only a small amount of food, and vomiting undigested food — sometimes several hours after a meal."
My journey so far.
My diagnoses.
It was the summer before my junior year of high school (2013). I was in so much pain. I told my parents, but they told me that it happens all the time and that I was fine. I chose to listen to them and ignored the pain because silly younger me couldn't possibly think something was seriously wrong. Flash forward to November. There's screaming from upstairs. My parents run up and find me on the floor of my room, screaming, crying and hunched over. I couldn't speak. I couldn't move. All I could do was cry from the pain. We went to the ER and stayed two nights. Test after test, there were no conclusions about what was wrong with me. Everyone started to think I was faking it. Flash forward to December. Another episode of screaming pain and nausea. Another ER trip and still nothing. Flash forward to January of 2014. I finally was referred to meet with a Gastroenterologist and bam, after one visit she already knew what was wrong with me. She told me I had Gastroparesis and to prove it, I got a Gastric Emptying Study done. We concluded that my digestive system was four times slower than the average. (Later on my number increased by more than double.) She knew right away about how we should start treating me. However, most medications I need(ed) didn't work and still don't work.
Medications.
1. Metoclopramide (Reglan). "Metoclopramide stimulates stomach muscle contractions to help with gastric emptying. Metoclopramide also helps reduce nausea and vomiting."
Now, I started off taking Metoclopramide, the main medication to treat Gastroparesis, and everything was great. However, after a few months of taking it, I developed a long term effect of twitching. We had to ween me off of it to prevent further damage to the effect. That's when they put me on
2. Erythromycin.Erythromycin, an "antibiotic, prescribed at low doses, may improve gastric emptying. Like Metoclopramide, Erythromycin works by increasing the contractions that move food through the stomach. Possible side effects of Erythromycin include nausea, vomiting and abdominal cramps."
I first took Erythromycin in doses of 250MG, but it didn't help at all. We upped my dosage to 500MG and boy did that suck. They were not kidding about those side effects. I had never felt such pain like the pain from taking Erythromycin. Period cramps? Child's play compared to this pain. I cried every time I took it, but I couldn't stop because I needed this to simply eat.
3. Tramadol. "Tramadol is a narcotic-like pain reliever. It is used to treat moderate to severe pain."
I was put on Tramadol for my excruciating pain, but surprise surprise, I had to stop taking it. I took one every day and didn't feel any relief of pain from it. Once I finished my bottle, I asked to for another, but my doctor wanted me to stop just in case I was addicted. Here's the thing, if anyone else took it the way I did, they would've been addicted. Since I felt nothing, I was able to quit cold-turkey and be perfectly fine. No withdrawal symptoms whatsoever.
4. Ranitidine. "Ranitidine works by reducing the amount of acid your stomach produces."
I was taking this with everything else to try to help my stomach ease up with the burning, but once again, I felt nothing. Yay for a having a body who doesn't want help!
5. Ondansetron. "Ondansetron blocks the actions of chemicals in the body that can trigger nausea and vomiting."
I was given this to help with my nausea. It didn't work.
6. Hyoscyamine. "Hyoscyamine works by decreasing the motion of the stomach and intestines and the secretion of stomach fluids, including acid."
I'll spare you the details and just go straight to the point. It didn't work. Shocker. I know.
7. Promethazine. "Promethazine prevents motion sickness, and treats nausea and vomiting or pain after surgery."
Nope. Still nothing.
8. Omeprazole. "Omeprazole is used to treat symptoms of gastroesophageal reflux disease (GERD) and other conditions caused by excess stomach acid."
I thought I would take a break from all the medications that didn't work and share one that does! This medication is a lifesaver for me. It actually prevents my acid reflux/GERD from happening. If I forget to take it or run out, I am doomed to pain. GERD is basically heartburn, but not your typical heartburn. Some have it more severe than others. I would say mine feels like someone is holding a torch, and every two minutes or so, they take the torch and go up and down from your stomach through your esophagus all the way up the the very tip top of you throat. The torch goes about one millimeter per second. Fun times.
Disclaimer: This list only pertains to my major Gastro medication. I left out some medications for Gastro, but I also have four other illnesses that I take medication for. Guys, The struggle is real.
Struggles/confessions.
So just a few things that are going on with me that most people don't know.
- I am 100 percent of the time always in pain. I don't remember what it feels like without the pain in my stomach. I forget it's not normal to feel like this on a daily basis. On a scale from one (unsettling heavy rock-like feeling at stomach) to 10 (no joke, someone taking a very sharp knife and slowly slicing the inside of you little by little while also stabbing every available surface), on average my pain is at a six. Luckily, I've only experienced a 10 twice in my life so far.
- I am 95 percent of the time nauseous. On average I throw up four times every day. Sometimes it can be so bad that I spend from literally morning to night throwing up. Even if I don't have anything in me to vomit, I dry heave. Most of the times in the dorm, I had to wait until 3 a.m. to go to the bathroom to be able throw up without the fear of other people's reactions, RAs thinking I was drunk and so many other concerns.
- I can't eat most foods. I try my best when I am around people to eat what everyone else eats. There are days that I have to rely on nutritional drinks for sustenance. Some days I can't even keep down water.
- I can never predict how my day will be. It's like one minute I am happily eating, and the next second I am vomiting everything out. It hits me at random times. One day I will be at my very best, and then the next day I am at the lowest of lows. I can be fine and great when I wake up, and then after just getting dressed or washing my face, I can lose all energy and just feel completely sluggish, nauseous and in excruciating pain. It also doesn't help that most of the medication I take does nothing for me and my body.
- I am very good at masking my pain and nausea. I hate showing that I am not feeling well. I set myself up for failure because then people forgot that I do have an illness. Also since it is an invisible illness, there are no indications or reminders that I am sick. I just don't like showing I don't feel well because then people feel uncomfortable and I don't want them to.
- I have four other illnesses both physical and mental. They all clash with one another. You'd think that since I can't eat and don't eat that much that I would be losing weight and be skinny by now. Well, in a lot of cases that is true, but my other physical illnesses counteract it. They cause me to gain weight even if I don't eat.
- Since I cannot control when I feel bad, a lot of the times I have to miss school and school work. Most people don't know, but right now, I am still behind in my classes. I haven't been on schedule with things since I have been diagnosed. Junior year, I had three quarters' worth of school work to finish in two months. Senior year, I had a semester's worth of work to finish in three weeks or I didn't get to graduate. Freshman year, first semester of college, I had to medically withdraw from a class and I had an incomplete that I had to finish by next semester. My second semester, I ended with a drop and two incompletes. I am now taking summer classes to make up for my dropped classes, but also am struggling to keep on schedule because of how sick I am still getting. It's hard, but hey, I've made it this far. I know I can keep going and one day be completely caught up.
- I hate when I have to suddenly tell someone I can't do something because all of a sudden it all starts acting up. All the time, I fear that people think I am faking it and using my illness as an advantage or excuse. Many times I have had to say that I can't do something, like an assignment, right near the deadline or something like that. I can't help it if I can't turn something in because I happen to be draped over the toilet or at Urgent Care for an emergency. I hate seeming like I postpone something because I am too lazy to do it. I am already so behind in things, so why would I want to keep adding to the pile? As bitter as I am about it, I completely understand why there is skepticism about it. I can't blame them for being cautious.
- The constant need to prove to people that I am actually sick gets tiring. Especially to official people like my teachers. I constantly get ridiculed and accused of faking things. Even when I give them reports from doctors, some people are still skeptical because you can't tell that I am sick. I'm sick of having to prove it, but I understand why there is such controversy over it all.
There is so much more I can write about my journey, but then this article would never end. If you made it this far, god bless you man. You are a trooper. I've just been hiding this story from others because I found it embarrassing. I thought it would make me sound weak and broken. Even only a few of my friends know the truth. I am at a state in my life where I am no longer ashamed. I don't care who knows my story. It is such a big impact in my life, and if someone thinks it's not worth knowing about, then that's their loss. There's no need for them in my life. I also chose to finally share this part of my story because of others out there that are going through similar situations. I want them to read about this and know that they are not alone in the long and difficult battle. I want them to know that they aren't the only ones dealing with this hardship and fight.
This may only be one out of the five illnesses I have, but it still is a huge part of my life. Maybe one day I will share the stories of the others. But for now, thank you for reading this monstrosity of an article. I really appreciate you reading my story. Until next time, kisses from this very sick (literally and also in a cool way obviously) human.