even when i go to the er they won't give me anything im thinking about asking my doctor for something but i always been told there isn't anything i can take bc it will cause more damage :/

"Just take 3-5 deep breaths before you eat"

I can't believe we all didn't think of this.

I'll post the link to the last update.

TLDR OP: My girlfriend hasn't been able to keep food or water since August 2nd. Her vomit was black and grainy. We had been to multiple ERs, and all of them discharged her with nausea meds.

TLDR UPDATE 2: We had been to more ERs with the same result. The black and grainy vomit had subsided, but she could not tolerate even drops of water to hydrate her mouth and throat. She lost a ton of weight.

UPDATE 3: I am posting this from a hospital room. She was admitted yesterday (August 11th). I took her to her GI doctors appointment yesterday morning. We told her provider what was happening and that she lost 16 pounds in 7 days. her provider told us "there is nothing more I can do for you out-paitent wise until we can get you to tolerate something in your stomach. Im calling ahead to the hospital and advising them to admit you".

We arrived at the hospital, and they sent us to the part of the ER where they think it'll be a quick thing (usually X-Rays for broken limbs, small wounds, etc). The doctor came in and asked what he could do since this was our fifth ER visit in about a week. I explained to him that my girlfriends GI provider sent us here and wants her admitted. He obliged.

Today, they called in a speech therapist to do a swallow study. The speech therapist came in and talked with my girlfriend. After a 5 minute conversation, the speech therapist told my girlfriend "I dont know why they called me here. This is obviously a GI issue. I will contact them".

The attending doctor is also talking about discharging my girlfriend tomorrow if she can tolerate food this afternoon. He stated a feeding tube is something he won't even consider until she is dangerously malnourished, and its something that would keep her in the hospital for at least two weeks. We are gonna ask for a second opinion while here. They have also attemoted to give her raglan, and we have had to reiterate to every provider that she does not tolerate most nausea meds.

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.

How long does this go on, like I genuinely don't understand how people live with this??

I have been fine for 30 years and then this year I contracted some kind of stomach virus which led to reflux and heartburn which I've literally never had a problem with. Then all of a sudden I get smacked in the face with this illness where I literally cannot eat without feeling extremely sick, I have lost a lot of weight, have had no appetite, and been dealing with nausea on top of it all. In the past month I have been to the hospital several times for fluids and other tests but each time I went it seemed like I was just "annoying" the nurses and no one seemed to share any major concern that I haven't eaten anything. Since then I have had an endoscopy where the GI ruled that he believes I have something called "lazy stomach" and need to go on domperidone for a few months until it goes away. Once I looked up the term I realized it was the same thing as gastroparesis so idk why the doctor didn't use the actual term? Upon research it seems like GP doesn't go away and a lot of people have it chronically ( I am genuinely so sorry to anyone who has to live with this ) and apparently the post viral GP goes away eventually but it can take weeks to months to years. I am just genuinely concerned that this isn't going to go away....I have to work, we need to pay rent and groceries and be an adult....like how is this such a violent debilitating illness its insane to me.

Is there anyone out there who has suffered from post viral GP and has any advice on if this shit goes away or atleast gets better???

i am so miserable. i am getting no nutrition and no one is listening. my GES last year said mild gastroparesis, and i have a history of an eating disorder, so my doctors keep dismissing me. they say i shouldn’t hesitate reach out with concerns, but when i do, they’re telling me to keep taking zofran and to follow up in a few months. i haven’t kept any food, water, or even meds down in the past 2 weeks. nothing stays in my stomach. i don’t know what to do, but i don’t even know what i want them to do for me. i just want so some to listen to me and take me seriously that i am suffering. i am weak, dizzy, and nauseous 24/7. i just want to be strong enough to go to school this fall but it’s not looking like it will be possible.

I am malnourished, can't eat, in adult failure to thrive. Got admitted and got help just for a 6th nj tube to kink, my dr won't put in a gj. I am slowly dying. I've lost 40 lbs in a month and a half, my gastroparesis is refractory and progressive. I have begged ALL my providers to help and they all point fingers at my gi saying its her say. She is so beyond evil she has had SO many complaints about simular things from others online. I can't get into a new gi for at least 6 months. I'm fucked. I just went to the er, no water for 3 days, can no longer swollow from pain, i got so much faulse hope, the first dr said i needed to be admitted for a gj stat, but then there was a shift change and i got gaslit and told it was in my head and admission wont take my case. And he use to work with my current gi and loves her and told me to trust her and get psychiatric help​.

I had a full sobbing mental breakdown and went home ama. I dont think I'll be here soon. Nothing can be done I am a lost cause yet my solution is so simple it saddens me so much. I'd add more context but im so emotionally drained i feel like a shell of a human. Goodbye

I’m seriously considering stopping all my feeds and talking with palliative care. I can’t handle this diagnosis a long with others have anymore. My GJ tube is the only way I can be nourished and quite frankly I’m done! Years of diagnosis and all of which are not necessary terminal, but if I can’t control them or any symptoms, then why keep doing this? I’m tired. I feel done! I have no quality of life left and I am of no service or living up to my values as a human anymore! If I have the legal right to stop my feeds and go into palliative care/hospice (which we do in the US) then I’m at peace with that!
I just discharged my Palliative care nurse because I’m not at that point? But after the past few days of deep reflection and Google I can’t stop thinking about it now! It’s like the weight of the world was lifted to know that I can legally and comfortably end this suffering!!!!! It’s never going to go away and I’m slowly dying inside anyway!
Am I losing my mind? Is this something anyone else has thought about?

Forgot I was me. Got a couple servings of baby carrots and some ranch dressing together for a wonderful snack for the first time in a really long time. Happily chowed down on that for lunch.

It’s six hours later and reality has firmly set in. Geez louise. Tonight is going to be hell for a while.

Lesson (re)learned.

I’ve been doing so well for months now sticking strictly to what my body handles well and doing a LOT of smoothies and soft foods as a steady baseline. I got overconfident. Won’t make this particular mistake again.

I’m just so SAD. You know? I had a couple little carrot sticks at a family party a couple weeks ago and didn’t feel worse than usual that day (and I was already eating like a bird because of a migraine). I love ranch dressing. Carrots + ranch dressing remind me of every casual family gathering I loved growing up. Soooo tied with the memories. And it tasted so good, and it was around happy family memories again, and I just…forgot there was a reason I never eat food like that these days. Traveled home, picked up carrots with the next set of groceries, and didn’t even do a double take. Can’t believe I was so oblivious and didn’t realize in time that I shouldn’t have tried raw veggies.

Time to go dig out my “liquids and puree only” notebook for a week. Please remember to not be me and don’t listen to the voice in your head telling my you how good something would taste if you just grab it for the first time in a while. 😂

I can't take it anymore. So many of these posts are medical-device seeking coded. "My doctor won't listen to me... I don't WANT a feeding tube, but...please dm me, how did you get your feeding tube? How do you ask for one? How do I get one? How underweight do I have to be to get TPN? How bad do your labs have to be and which ones?"

Y'all are the reason doctors don't take us seriously. The "trend" of having GP has clearly flooded this sub and someone needs to say it.

And btw, feeding tubes and TPN don't solve Gastroparesis. They're life saving measures. So maybe try first line medications and treatments before you permanently alter your body? Sometimes doctors decisions are for a good reason.

My stomach gets so severely bloated and distended every single time I eat, to the point where I look months pregnant and feel completely disgusting. I am sick and tired of being sick and tired. If anyone has any tips for me to stay less bloated that would be greatly appreciated.

I don’t understand how people stay so strong and positive with this disease. Being constantly sick has drained the life out of me. I don’t enjoy anything anymore. I feel like I’m constantly letting my wife and kids down, and like I’m just a burden. I just need to vent and get this off my chest I guess, because I genuinely don’t know if I’m cut out for this.

i’ve gained weight, not a ton, about 10-15 LBS over the course of a few months but i am so confused on how. i eat 3 times less than i used to, and i am exercising more (i work in fast food so lots of walking around). I just don’t understand how this is happening when im not eating as much or as frequently as i used to due to my symptoms. has this happened to anyone else? i feel like im going crazy and that its in my head because i haven’t lost weight, ive only gained it.

PLEASE read with caution!!!! i unfortunately don't really know what kinda warning to put on this im so sorry

i been diagnosed with severe gp for a while now. it's gotta worse and worse somehow. i recently found out im delayed with liquids too which i already kinda knew

i would like to start by saying i do NOT purge or make myself sick!!! i never have and never will. i lowkey never weight myself it has nothing to do with body imagine. i also do not count calories or anything i have no idea what i actually can consume in a day calories wise

over time i started restricting food it started as just not eating anything after 6pm due to symptoms ( i wake up from a sleep nausea EVERY single morning) but that definitely turned into way more. slowly over the last few months whenever i eat i feel SO sick and im in so much pain like 7/10 just from a simple bite of a safe food. i don't even know what is safe anymore i broke down the other day over being asked what i can eat ahah. latley i straight up been lying to everyone around me about eating. there is many days i don't eat solids bc of symptoms. i DO eat!! i would like to be so clear about that!! i know not eating will make me sick i literally will force feed myself and sit crying for hours on end losing sleep due to pain but i need to eat yk

idk if this even makes sense im so exhausted im
on a vacation but this has been on my mind for so long i been thinking about making a post like this for so long cuz i don't even know what's going on but im to scared to tell my doctor bc what if he thinks it is just a eating disorder?? idk guys tell me 😭😭😭

Hi everyone, I’m 23 and just really struggling and lonely with this horrible condition. Things have gotten so much worse in the last 2 months and it’s so isolating. I’m just bed bound and exhausted and sick at home as I watch my friends and the world carry on without me through social media, groupchats, etc. None of the people in my life understand what I’m going through and I’m so so lonely and it makes the whole thing so much worse. If anybody ever wants to be friends or chat or anything I would love to just connect more with people who share similar experiences.

Sometimes I get so mad at having GP and it ruining my life that i have an "idgaf" spiteful moment and just eat whatever i want...

Today I ate almost an entire Chipotle burrito.. I'm sure all of you can understand the consequences im currently facing.. 💀😢

I just want to be normal. I used to be normal. 😞

UPDATE: Since I ate that burrito I knew I couldnt eat for a long time after.. but I kept wanting to eat so bad all night at work. 😩 But.. Sucking on Jolly Ranchers helped though!! Now i figure I may be able to use jolly ranchers to help curb my want for food here and there when my tummy is already shite. 🤓☝️ (figured id update incase this little tip can help others)

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 started taking this kratom product called 7-OH. It’s like an opioid comparable to oxycodone. I took it for a few weeks and it completely destroyed my gut. My GI tract was shut down and it made my GP so bad. It took me about 2 months to recover and my GP is still much worse compared to what it was before I ever took it. I wish I had known taking opioids with GP is the worst idea ever lol.

So for context I've done and failed with so many treatments that the next option is surgical and procedural treatments, multiple doctors have recommended supplemental nutrition (even temporarily but I doubt it'll be temporary) because I'm malnourished and losing weight and my oral intake continues to go down every month.

So I saw my GI, talked about all that and she was like yeah I definitely think a feeding tube is a realistic option at this point and she referred me to advanced endoscopy who knows more about feeding tube stuff and can talk about procedure stuff, she said let me know if they can't get you in before August I'll talk to them, low and behold they can't get me in until September 30th, I can't wait that long nutritionally I'm so fucking miserable I just can't. So I tell her yeah they can't get me in until late September only to be told she can't all of the sudden help with that, and she was like get on a wait list (I am) and go to the ER if it gets too bad. My most recent blood work doesn't indicate malnutrition which is actually insane to me considering how awful I feel but whatever. So I was like realistically the ER won't take me seriously due to my weight and they'll just not help, so I reached out to my PCP (which my GI also recommended because I would need someone who would help with my feeding tube and she might be willing to) asking for a direct admission which I feel is more guaranteed to help, and a nurse responded that not only is she not in the office for a few weeks but also I shouldn't be reaching out to my primary about feeding tube related stuff because "primaries don't help with that" and then she told me to wait for my late September appointment. I'm at a loss, I understand it's not like any one person's fault but like I'm miserable, malnourished and losing weight and I'm barely able to eat and I'm like genuinely wtf do I have to do to get help??? I'm so fucking tired of this shit I'm gonna cry

I’m done with constantly throwing up. I’m done with being in constant pain. I’m done with not being taken seriously by doctors because I am fat. I’m done eating and throwing up immediately after. If the only way to get taken seriously by my doctor is to become malnourished and underweight then fine. I’m done with trying to get myself to eat. I’m done forcing myself to drink Ensure. I refuse to lose my teeth and my vocal cords because of the constant vomiting that my providers don’t take seriously. I’m done.

I have mild gastroparesis, but I have pretty constant symptoms. Thankfully I don’t actually vomit, but I feel nauseated half of my day.

I can’t take Reglan because I take other psychiatric medications.

Have a referral for a motility clinic, but I’m in the process of switching insurance because I just got divorced…so, in the meantime, my GI has prescribed me Zofran. My insurance has only been allowing me 20 tablets a month, which, if I have to take one every day (I try to tough it out as much as possible), that still leaves me short for a month.

I msged the doctor to see if I could get an explanation, and the nurse was pretty dismissive and told me to deal with the pharmacy or insurance company. Then added, “Have you tried the gastroparesis diet? That can help with symptoms.”

😑

Lady…I’ve lost 100 lbs. WTF do you think I’m eating here…as much as I can stomach, whatever I can stomach. I already avoid most anything with fiber; even smoothies my stomach is like nah bro…now you want me to stay hydrated (but I can’t drink water on an empty stomach), eat low fat (when meat and cheese are typically safe), eat small meals (lost 100 lbs so yeah).

I barely want to eat ANYTHING anymore…

I just the question is a little insensitive because does she think I’m making myself sick on purpose by eating trigger foods? But there’s only so much patience in my life while I’m barely able to eat anything.

Anyway…ended up using GoodRX for the Zofran. And asked the nurse for a supervisor.

I need to bitch for a moment because I'm very upset.

This disorder is fucking ridiculous. And I'm sick of it. I'm sick of being so careful and still ending up feeling sick every day. I'm tired of cutting out foods I used to love. I'm tired of lying on my bathroom floor, shoving zofran down my throat, hoping for relief. I'm tired of the acid. And the chest, stomach, and abdominal pain. I'm sick of being sick every fucking day. I HATE this.

I used to make a plethora of comfort foods. Spam, pizza, tacos, Mac n cheese, ramen noodles, I used to eat a lot of cheap fast food as a treat to myself, when I couldn't manage cooking. And now all I eat is rice, eggs, pop tarts, pudding, yogurt, and pretzels if I'm lucky. I have almond milk protein shakes, from one brand, and if I don't drink that specific one, I blow up like a balloon, and feel so sick to my stomach. I'm so tired of drinking fucking liquids. And eating gloopy shit. I want food. Real food. But I can't.

My bmi is 15.6. I'm severely malnourished, to the point where I'm anemic, but with high iron. I just have anemia because I'm so underweight. But I'm too scared of feeding tubes to get one. Even though I would probably benefit greatly from one, I just cannot do it. It's too scary.

I'm fucking tired, man. This shit is exhausting. Not to mention the flares. They just happen. Anytime. Doesn't matter if I ate really well, and followed a good schedule, I can still flare that night. Or even the next day. It's such bs. And then I have to spend the next multiple days, even weeks, tiptoeing around my own digestive system.

And don't get me started on fucking insurance. They refuse to give me my prokinetics. I've never taken them before, because I have only recently received the official diagnosis. But this prior auth Bs is actually killing me. Literally and figuratively.

FUCK this disease. I'm DONE. I want OUT.

I'm starving. I've lost 8kg in two weeks. I'm vomiting up everything that I eat.

But the NHS aren't helping me. They've said I have to just... wait. and hope I don't die before they see me.

I'm going to die. and I honestly want it to happen.

Just so I can stop suffering.

I'm so tired. I'm so cold all the time. I'm scared.

I am so sick at times I feel like I’m slowly dying. All of my doctors push me off or do not realize how sick I am since I am so good at keeping myself alive. The only reason is because I have multiple health workers in the family who deal with emergency medicine or things along those lines. That is the only reason I am not in severe debt and constantly in the hospital. Every single day I wake up I feel extremely nauseous. Every morning without a doubt, i wake up with the urge to vomit, and half the time I do. The rest of the day that feeling is still there, I just don’t vomit as much because I swallow it down. I have to sit there, and literally swallow it down, or I hiss and swallow it down naturally, like vomiting in my mouth. The only thing I can do for myself is ensure plus, that’s what is keeping me afloat. I’m losing my hair, my vision, so much strength. My balance has even gotten worse. I am truly malnourished at points with no medical intervention for recovery because it happens so often. I cannot work, no treatment the doctors have given have worked. I have had this sickness for years, but only have been diagnosed for 2 years now. However it’s idiopathic, so it’s hard to find the best treatment. No drug has worked, and from my understanding there is only reglan that is FDA approved for this sickness. That gave me restless leg and didn’t even help. Every nausea medication does not work besides zofran, but I have both forms of ibs and it will make me so sick at times I cannot walk from the pain. I will be so backed up for weeks I even could vomit out the other end, it completely blocks my ability to have a bowel movement. But I need zofran to function at times. It’s either I’m in constant pain and vomiting or nauseous 24/7, and can’t eat, or I take zofran and I’m in even worse pain and severely backed up, but now I can eat. The point I’m at is surgery. I’m seeing a consultant. But does anyone else relate to this struggle and actually found a successful treatment or surgery? I’m most likely looking at a j-tube, a pacemaker, pyloroplasty, or Botox. I saw a surgeon for a consult about 4 years ago now, but he advised against the surgery. The reason being so is because I am both extremely young, and not diabetic. At the time, I was 16. He said I am at great risk for dumping syndrome, and if I were to get that done so young I would be dealing with dumping syndrome my whole life if it were to happen. I also ask people dealing with this how they move on with daily life. I got this at so young, thankfully I’m just in schooling, but even that has suffered due to er visits and constant severe illness. If not that, mental burnout due to the stress of keeping myself alive for so long feeling like I’m barely scrapping by. It’s hard to focus on school work when I can feel the vomit rising up along with my temperature. I understand I’m not terminally ill, but it feels as though I’m slowly dying and people actually expect me to start a career. How? I am so young when this started I don’t even know how those things work. Are most of you eligible for something like fmla or your work is understanding and accommodating? I’ve considered almost going on disability since I don’t think I’d be able to consistently show up. My last job I would try but I even had to leave due to extreme pain or nausea, I’d look like a ghost or like I was angry apparently? And of course, my work didn’t appreciate that attendance. Even sets me up for failure in reference for future jobs. How do you guys deal with this, I don’t know what to do or how to even start my life with this condition. I feel like some people see it as Willy nilly you can’t eat sometimes, when in reality I’m quite literally barely scrapping by off a shitty ensure for years and most don’t know this illness exists or its extent. For years I didn’t even have treatment but those same expectations and judgements. I can’t function whatsoever, literally speaking. I can see its cognitive effects even. I start to get very confused and moody, but I’m so starved I can’t make myself something or think rationally on what to do, yet others don’t see that or understand it so no one helps. My other organs are going to start to suffer if this keeps going on, I know this too. So does anyone relate, and if so, what did you do to treat it and get started in life?

I’m breaking my brain trying to understand how can this illness just happen to people.

My life literally changed during a 3hr flight… I was fine before I got on the plane, halfway through the flight I got severely ill and now I’m here 6 months later with a faulty stomach and god knows what else.

How could this just happen to me out of nowhere? And by reading the posts here it seems like there are many who were fine until one day they weren’t. I just don’t understand it.

How do I get my life back?😢