r/Gastroparesis

Thank you to everybody who commented on the last post. All the insight was very helpful and made me feel better, during a time when I was unsure if I was overreacting.

My mom reconvened with the AP's, nurses, and 504 coordinators. The call made her cry for three hours. If you saw the last post you might remember that if I needed to throw up (this happens to me on a daily basis) I could go to the bathroom to do it, however I then had to report straight to the nurse every single time.

We were upset and thought this was unfair. Reporting to the nurse for no reason when I am almost an adult and I am able to self manage and assesses my condition was unnecessary and taking time away from class (making me fall behind).

Now they have 'changed their minds.' They are now saying I am not allowed to vomit in the bathroom and I need to walk all the way to the nurse to do it. This is just so upsetting for so many reasons.

1. It's vomit I can't exactly hold it in (if I could do that wouldn't I just not vomit at all) also then it comes out my nose
2. The nurse is very far away.

Their "reasoning" for this is that they did not realize that on my 504 it says I have POTS so throwing up could make me dehydrated.

Finally, on the last post a lot of people suggested that I try online school. While I have looked into this, I just don't think it's fair for me to have to leave one of the best public schools (academically) in the USA because some adults want to treat me like I am not even human. Also, I can't help but think that if this were for any other reason (like a more common condition ie. diabetes, Etc.) then maybe they would actually think about what is best for me.

Thank you for taking the time to read this. I will let you know if anything changes...

I just wanted to add that my *goal* for this post was not to call anybody out or start any beef, I just really want people to understand that we need to keep fighting for change. If I have kids one day, and they were to have GP, I sure as heck would be giving a slideshow presentation to the community or something about how real this condition is!

Is anyone with gastroparesis basically unable to eat small meals, snacks, or really anything throughout the day? I’m struggling so much with this right now that I barely leave my house. Some days the pain gets so bad that I’m just curled up in a ball.

For about 6 months my stomach issues have gotten progressively worse. Most days I don’t eat until late evening. Even a few bites earlier can cause hours of nausea, horrible acid reflux/burning, bloating, fullness and pain. The pain can be all over my abdomen and radiate into my sides and back, including my lower back. After that, I just can’t eat again for hours.

What confuses me is that eventually I can get genuinely hungry and sometimes eat a decent-sized meal, but then be in horrible pain afterward. I also don’t vomit. I’ve gone so long without eating that I’ve gotten shaky and felt like I might pass out, almost like hypoglycemia, even though I don’t have diabetes.

I have MS and gallstones, although my ultrasound showed no blockage and my HIDA scan showed normal function. My doctor is sending me for a gastric emptying test but already is thinking I have this.

Do you feel worse when you poop?

Like colon pain and feeling more bloated?

PEG3350 helps me poop, but the colon pain gets worse as well as my bloating. And it's progressive, the more I poop regularly (on a daily basis) the more colon pain and bloated I feel.

Does this happen to you as well?

I had a 6 day binge my stomach is soooo tight and hard and uncomfortable. My cravings were out of control. However the scale jumped up 14lbs. Never has this ever happened to me before so I am so concerned at that large of a jump. I know that there is lots of volume in my stomach from food and my stomach not emptying properly… is there any suggestions on what has been the most beneficial for getting bowel movements going and also to help the scale go down. I’m beyond uncomfortable and my stomach is soooo tight hard and tight. Pls don’t suggest water and lots of walking that’s already implemented daily for me. I need advice that will help

I have severe gastroparesis, to the point I cannot even eat or drink water. The ER did nothing when I was in a severe 10/10 attack. Didn’t even give me tylenol, just fluids and nausea meds. I am in excruciating pain every day. My doctors don’t care. I see the gastro tomorrow. I feel like he will do nothing. I am at the end of my rope. I can’t stand it anymore. He needs to do something. Idk what to do anymore if he does nothing. I don’t know. I hate my life so much. I don’t know what I did to deserve this pain. I am so scared every day. I don’t want this.

Hi everyone.

I’m writing from
The UK.

I’m 21, and have had gastroparesis since 2024.

I have tried all the anti sickness and stomach motility medications they can give me.

I’m now at a point where I’m throwing up everything, drinks, food, medication. All of it.

I had a follow up with my dietician the other day just sobbing to her about how awful my symptoms are and she asked me what I wanted to do, and I just said I’m seriously considering a feeding tube because I just want stable nutrition. This isn’t about wanting a tube, because no one wants that, but my symptoms are so severe I can’t cope being alive anymore.

She just blatantly said to me that in order for me to be considered for a feeding tube, I’d need to loose more weight.

I have struggled immensely with anorexia from the ages of 10 to 17 years old and it was something I kept to myself out of shame and stigma (I grew up in a religious South Asian family.)

But now her saying that has just sparked my anorexia mindset again, so if loosing weight is the key to getting stable nutrition and a tube, then I’m more than happy to fucking starve myself then.

Fuck the NHS. They are killing me.

This was the letter she sent me after the follow up.

Dear Colleague,
 
Alisha was reviewed in dietetic gastroenterology clinic for nausea and vomiting.
 
 
Dietetic plan

Nutritional screen - zinc, selenium, vitamin A, vitamin E, vitamin D - these have been requested

Better Your Multivitamin spray can be purchased over the counter

Continue with little and often eating pattern
Fortify meals as able

Enteral feeding will not be considered at this stage
 
GP to action

Please stop all prescribed nutritional supplements - Aymes ActaSolve Smoothie
Stop Forceval as not tolerating this

I have organised a follow up in 4 months

Yours sincerely,

Dietitian

I just feel SO depressed and angry and I just want to die because what is the point of living life with these fucking awful condition.

And I’m not stupid, I know feeding tubes come with risks. But I just want stable nutrition. That’s all.

I never get more than a 30 second warning before I throw up. Does anyone else just not really get nauseous but get sick anyway? They have prescribed zofran but I don’t get enough warning to take it. Does anyone have any tips or meds that work for them?

Does anyone know of any stool softener gummies that don't contain natural strawberry flavoring (I'm allergic)? I'm supposed to take a stool softener daily. I've been using the Colace gel coated pills but recently for whatever reason I've been having trouble swallowing them.

I’ve had two 4 hour gastric emptying studies and both times the technicians have commented that there was a lot of activity in my stomach during the first hour but the food didn’t seem to be moving along.

During that first hour, I get some gas coming up and feel an increasing urge to vomit. I eventually end up vomiting multiple times.
When I return to the waiting room, what comes up is some stomach contents but mainly clear stomach (fluid/juices).

When I return for the next scan after being out of the room for an hour, the technicians have commented that the food has finally started moving through.

Both studies showed a 15% retention at 4 hours.

So I’m wondering, if there’s lots of activity in the stomach during that first hour, suggesting that the stomach is contracting and trying to push the contents through, isn’t that somewhat different from what you’d expect with gastroparesis?
I thought gastroparesis involved the stomach emptying slowly because of impaired or weakened contractions.

I was also prescribed domperidone but it actually made the vomiting worse, so I had to stop taking it.

It seemed to make my stomach contract harder. Normally I’ll vomit multiple times after a meal but with domperidone I would start vomiting about 20 minutes after taking it and even the water I’d taken with the tablet would come straight back up.

Could this pattern suggest something other than straightforward gastroparesis, despite the 15% retention at 4 hours? It’s more like the stomach is pushing but it’s not passing the pyloric to me

I’m getting a feeding tube soon, but in the meantime, what do you guys eat to minimize pain but still get in nutrition/calories? I’ve started making cream of wheat and I really like it. Any other suggestions??

Im currently taking Zofran which helps but backs me up for days. Are there any other medications that are effective that don’t make you drowsy either but have the same level of effectiveness?

I was given reglan 10mg at the ER Sunday night, and im still suffering side effects from it.

so i finally went sucked it up and went to my pcp to ask for help. she was very alarmed by my weight loss and wanted to go straight to the er. she called a palliative care doctor and gi physician at the hospital to let them know i was coming, so i went.

for some reason everyone there seemed to think i was there for migraines? even though on mychart they wrote it as “headache”. when i got triaged i let the nurse know that wasnt why i was there, and that my doctor was more concerned about my inability to keep food down rather than my migraines. he was very dismissive of this, and said “well do some labs” and kept talking about treatment for migraines.

i ended up waiting for almost 4 hours, no bloodwork, no iv, no nothing, and just went home instead. i’m not sure that i would have been treated faster or better if they listened but i’ve learned my lesson i guess.

update:

as i was leaving, my pcp called me to go back. she said she called again and everything would be sorted out but it wasn’t. the doctors she talked to never showed up, and i didn’t hear that they reached out to anyone in the ED.

i got my blood drawn by a nurse who seemed really irritated that i was dehydrated so the blood draw was slow. she kept making snide comments about “kids my age not drinking water”. the pa who saw me was also really rude and made fun of my doctor’s concerns, she was like “what does she want us to do exactly, admit you? what for, dehydration?” she also sounded shocked that i had gastroparesis. she said “that’s a heavy diagnosis, do you have diabetes or something?” and when i said no, she said “wow that’s insane”, ordered fluids, reglan, asked the nurses to give me some gatorade, and sent me home.

i am really tired of doctors at this point. i told my pcp nothing would come of this visit but i went anyway and had to deal with being humiliated because i wanted help

https://www.reddit.com/r/Gastroparesis/s/bCELxPMboH

We are new to this illness.

My daughter 33, was suddenly hit with it in the beginning of July and has lost over 30lbs. so far.

We found a GI who performed a endoscopy and said, everything is fine just eat! There’s no reason you can’t eat! 🙄

We didn’t know what was wrong until the stomach-emptying test, which gave us a diagnosis and brought us here to this support group

The new GI seems competent and fluent in Motility meds etc.

We are currently in the ER again for IVs

Thank you to everyone in this group for the quick education which is essential in understanding the terminology

This is a terrible illness

I had a clean endoscopy and colonoscopy (so much relief knowing that)

But I only poop weekly. And now I am in a flare. Gut rot, gas, horrible pain under my left rib cage, trapped gas, nausea. And I just started getting muscle spasms in this flare. Just annoying.

I've been having these symptoms for 12 years. Over the course of a week, I developed an absolutely WRETCHED pain under my left rib cage. And its been hell ever since.

My symptoms are absolutely triggered by my endometriosis, as when I had my first excision surgery, I had almost 5 years without the pain. My symptoms are not made better or worse with anything. Especially during a flare. Eat, dont eat, i feel miserable anyways.

My gut is just a mess. I constantly have my fist in my side because of the pain. Its stuck gas. I have to sleep on my stomach. I can't pass gas. Either way.

Ive tried raglan and loathed it. Ive tried other gut stimulants and I hated them.

I had shots in my side to relax the muscles (?) They never worked

I go to the doctor tomorrow and I just don't know what to do.

I'm weight restored in that SOLID way. Ive been couchbound for 3 years and haven't gained or lost weight. Im most amazed by that. Still odd. But man am I stable.

Hey! So I thought I would share with everyone what happened recently, since tomorrow I will be speaking with the school board.

Backstory:

1. Before school started all teachers were made away multiple times in the form of emails and in person meeting that I may have to run out of the classroom without warning to vomit.

2. All teachers were kind accepting about this except one (foreshadowing)

School starts:

Of all classes I am in a health class. We were taking a tour of the school. (For context I also have POTS) I started feeling lightheaded, so I sat down in a chair while they were talking. Then I got yelled at in front of everyone. The teacher said, "if everyone can't sit down, then you can't."

A couple minutes later I ask to see the nurse because I get an aura that I need to vomit. To my surprise the teacher says no? In my head, I know time is running out before everyone see's me vomit. Eventually, I run away to the nurse.

The nurse then questions me about my GP for over an hour, (this is after I throw up and she insists on inspecting it so she can "get to know me better"?) She hears I am on BC for my PCOS and becomes very upset. She also claims that if I don't eat breakfast, then how is it possible for me to throw up in the morning? I explain a lot of times it is acid or bile...

Anyways the school makes me see the nurse EVERY SINGLE TIME I vomit (see previous post) My mom insisted my health teacher be changed, but the school is refusing... just thought I would share since I have the meeting with the AP tomorrow, and I am starting to feel like the school just thinks of me as a problem kid...

I was given reglan at the ER and immediately after getting it started feeling insane. I ripped my iv out my arm and was lying on the floor because i felt hot. Started shaking a lot uncontrollable. I literally told them I wanted to leave because i was so hot. I get home and my anxiety is on a 100. I thought i wasjust hot because I also have pots then i searched meds at er made me crazy and realized anti nausea could do that. I freaked out, called 911 and they sent me back to the ER. I couldn't stop shaking and i just felt so helpless like i was going to die.

It was a nightmare and was so embarrassing. I didn't know what to do and i was shaking so much my legs started hurting. I was given benadryl and then was sent home. Finally got home and just crashed to sleep. Today im still feeling a bit anxious and just super aware and focused on things like my blinking. Does this go away and how long dies it take? Im scared itll cause permanent damage to me and something ill live forever with. I genuinely just wanted to die.

I’m 20F, and I was recently diagnosed with grade 3 gastroparesis after dealing with stomach issues pretty much my entire life. My gastric emptying study showed that I still had 47% of the food left in my stomach after 4 hours.
For years, every stomach doctor I went to blamed my symptoms on my weight. It wasn’t until I lost over 70 pounds in just a few months because I literally couldn’t eat or keep anything down from constant vomiting and diarrhea that my GI finally ordered a gastric emptying study.
Now I finally have an answer, but I still feel like I’m not being taken seriously.
I’ve been hospitalized twice since my gastric emptying study in July because I’ve been vomiting nonstop and still can barely keep anything down. I’ve called my GI multiple times trying to get in sooner, but he won’t see me until the 26th. I’m miserable. My quality of life has gotten so bad, and I feel like I’m watching everything I’ve worked for slowly fall apart.
I’m a junior in college and I’m also a thrower on my school’s track and field team. Track is a huge part of my life, but more importantly, it helps pay for my education. I’ve gotten so weak that I can barely stand for more than 10 minutes without feeling completely exhausted. I’m genuinely scared that I’m going to have to quit, and if I lose track, I don’t know how I’m going to afford to stay in school.
Even my “safe foods” aren’t safe anymore. I feel like I’m running out of things I can eat, and I really, really don’t want to end up needing a feeding tube. I just want some kind of quality of life back. I don’t expect to magically be completely healthy—I just want to be able to eat something, go to class, throw, spend time with people, and live my life without constantly being sick.
I also have primary biliary cholangitis, and my liver levels have been all over the place with how little nutrition I’m getting. I just started back at school, and I’m already at the point where I feel like I might have to go back to the hospital because I’m so miserable.
My mom also has gastroparesis, but hers is nowhere near as severe as mine. She can mostly eat what she wants and has mild flares here and there. For me, it feels like one wrong food can put me into a flare that lasts for weeks or even months. I know everyone with gastroparesis is different, but it makes me feel even more alone because I don’t personally know anyone my age dealing with it this severely.
The last few months have honestly taken me to such a dark place that there have been times I haven’t wanted to live anymore. I just turned 20. I’m supposed to be thinking about my future, finishing college, competing, having fun, and figuring out my life. Instead, I feel like my entire life revolves around whether I’m going to throw up, whether I can eat, whether I need to go back to the hospital, and whether my body is going to let me get through the day.
What hurts the most is knowing how long I begged doctors to take my stomach problems seriously, only to have everything blamed on my weight. Now that I’ve lost over 70 pounds because I physically cannot eat enough, suddenly there’s a problem worth investigating. I can’t stop wondering if things could have been different if someone had listened to me sooner.
I want a future. My passion has always been helping people, and I want a career where I can do that. I don’t want gastroparesis to take away college, track, my future, and everything I’ve worked for.
If anyone here has severe gastroparesis and has been in a similar place, please tell me what helped you. Foods, treatments, questions I should ask my doctor, ways you got doctors to actually listen, how you handled college/work, literally anything. Even if you don’t have advice and just have some words of encouragement, I could really use that right now.
I just want to feel like there’s some hope that my life can get better than this.
One more thing I forgot to mention—my PCP’s PA prescribed me Reglan, but I absolutely cannot tolerate it. It makes me feel completely unlike myself and honestly makes me feel like I’m going crazy, so taking it has been really difficult. I also have 8 mg Zofran for the nausea, but at this point it barely even touches it. I feel like I’m running out of options for managing the nausea and vomiting, which is making everything even more frustrating. If anyone has had a similar experience with Reglan or has found something else that helped when Zofran wasn’t enough, I’d really appreciate hearing what worked for you.

hi everyone, i’m just wondering if anyone has run into this problem and/or how they’ve fixed it. i’ve been diagnosed with gastroparesis for about 10 years now. in that 10 years ive been on tons of different meds, tried different diets, etc and have finally seemed to find a regimen that works for me. however, im running into this problem lately that’s kind of driving me insane and need some advice. i started emdr therapy 2 months ago, and in that time, have noticed that any “heavy” emotions i feel like anxiety, depression, even excitement make me immediately nauseous. i know gastroparesis is an injury to the vagus nerve, which also is in charge of regulating emotions, so it kind of makes sense. but does anyone know how tf to fix this? i want to be able to feel my feelings without needing to run to the toilet lol

My wife had a gastric emptying scan back in 2015 which confirmed gastroparesis. It was only a 136 minute scan and we can't remember what food she was given. Her gastroparesis has gotten worse and she needs to get another scan which will be the newer 4 hour scan.

The problem is they say she'll have to eat eggs, toast and an 8 oz cup of water. Eggs trigger bad indigestion for her so if she ever eats them she has to take Tums, simethicone gas pills, Beano or Mylanta which I assume are not allowed during the test. I asked if there was an alternative like oatmeal and Kaiser said the only other option would be an egg substitute.

Also, if she has to eat toast, it would have to be extra toasted because any amount of raw bread causes her problems, too. I'm not sure how accommodating they would be about this.

And finally, water is a big problem as well. Her worst symptoms are when she drinks water with food. The water just sits on top, causing her to burp up the food constantly and making her miserable. She's totally avoided drinking water or any other fluids with meals for years because of this. The only fluid she can drink with meals is 1% milk but I assume they wouldn't allow her to substitute that for the water either.

What do people do when they have such problems with the food and water they make you eat for the test?

As I said, we can't remember what she had to eat for the first one 11 years ago. I recall her feeling uncomfortable but her problems weren't as bad back then. We're just worried she won't be able to do the test. She absolutely must get her gastroparesis treated because it's affecting her ability to take an oral chemotherapy medication for a gastrointestinal stromal tumor (GIST) she had removed last year. She has to take this drug to keep the cancer from coming back and her slowed stomach emptying is causing problems with how it's being absorbed and possibly contributing to her side effects from it.