r/Gastroparesis

hello. so i have severe gastroparesis and have been on TPN for 4 weeks. However, it hasn’t been enough to help me gain weight. My doctor wants me back on tube feeds, however the pain I get from even 10ml/hr is excruciating through my GJ tube. I don’t know what to do. I can’t eat much but clears and the tube feeds put me in such pain. But if I don’t gain weight i’m going to die. Please help. What do I do? Please.

Hi everyone! I’m new here. Not sure what I’m looking for with this post. Advice? Personal experiences? Anything? 😭

To preface, I have hEDS, POTS, and MCAS. I’ve had moderate GI issues for ~5-6 years now (bloating, food sensitivities, nausea). Tons of nutritional deficiencies. But my symptoms have never been this bad. About 2.5 weeks ago, in the middle of an hEDS flare up, I woke up with textbook Gastroparesis symptoms, minus the vomiting. I’m terrified of throwing up so I will mind over matter that s*** every single time. Even if my mouth is actively watering. My care team and I are pretty positive it’s GP.

I’m having a really hard time with intake. I’ve been in the ER twice now for fluids, and have lost 20 pounds so far. I don’t really have extra weight that I can manage to lose and I’m really really struggling. I can’t tolerate pretty much anything and am getting in MAX 3 cups of liquid and maybe 500 calories total every day. I’m barely ingesting anything because the aftermath is so horrible.

My GES is in 2 weeks and the waiting is (quite literally) killing me. How do I do it 😫

I was recently diagnosed with intestinal failure.

I've been on TPN for 3 years now, after suddenly not tolerating J feeds anymore. I was doing pretty well, until having SMAS, MALS, colectomy, and ileostomy surgery 7 months ago. my surgeon found ~1/3 of my small intestine was necrotized so he resected all of that. my motility completely stopped afterwards.

nothing has moved since- my G tube drains 24/7, and I've had less than 300ml ileostomy output in the last 7 months. i've had 12 hospitalizations for pseudobstructions in the last 6 months.

IV zofran, IV emend, and IV benadryl have been unable to manage my nausea and vomiting. any other ideas? I can't do phenergan or reglan due to dystonia.

also, is there a specific community for IF or CIPO? or intestinal dysmotility? I have so many questions. thank you 🫶🏻

Hi everyone,

I’m a 35F who was diagnosed with gastroparesis in 2017. About a year ago, I had an Enterra Gastric Neurostimulator implanted because I had chronic nausea that just wasn’t responding well to medication.

Overall, the device has honestly been amazing. It’s helped my nausea so much, and up until January 2026, I hadn’t had any issues with it.

Around January 2026, I started getting these weird stomach cramps. At first they were pretty mild and only happened when I was walking. They would go away pretty quickly, so I didn’t think too much of it. Over the following months, though, they started happening more frequently and became more painful.

It’s hard to describe the pain, but it seems to stem from the area where the device is implanted. The closest thing I can compare it to is an air bubble that can’t escape, except the pain is absolutely excruciating. At its worst, it’s honestly a 12/10. My partner has never seen me in this much pain, and I’ve been through two ACL surgeries.

I told my GI about it, and she ordered X-rays to make sure the device and leads looked okay. Everything came back normal. She prescribed hyoscyamine and muscle relaxants, which I thought were helping for a while.

Fast forward to a few weeks ago, and the pain became unbearable. I was literally crying because it hurt so badly. I couldn’t walk or even breathe normally during the episodes. Heat was the only thing that calmed it down enough for me to eventually fall asleep.

Then it happened again yesterday and completely ruined our July 4th plans. I threw everything I could think of at it—hyoscyamine, muscle relaxants, Tylenol, Advil, and a heating pad—but nothing touched it. The pain lasted for hours and is actually still continuing today.

Has anyone with an Enterra device experienced anything like this? If so, what ended up causing it? Was there anything that helped?

I’m honestly scared they’re going to tell me the device has to come out because it’s been such a lifesaver for my nausea. I have an appointment with my GI in a few weeks and definitely plan to bring this up, but I was hoping to hear if anyone else has gone through something similar.

Thanks in advance!

Hi Everyone,

I recently got my 4th GES done and my % left was at 19% at 4 hours. My previous was 49% I’m afraid that my Dr. will write off my symptoms since my results improved however I’m still struggling and feeling worse than my previous tests. Does anyone have any journal or app suggestions for writing down the symptoms everyday and possibly food intake?Almost like a period tracker? I just want something to where I can show the pattern of my symptoms and show that I’m following the diet and even with it I’m still showing symptoms.

This is gonna be long but here’s the backstory.

As a kid i always had stomach problems. I threw up constantly as a baby and had bad colic. As I grew older I continued to constantly puke. My mom always said I “eat like a bird” which just meant I eat very small portions. I’ve always been quite thin and even got bullied for appearing “anorexic” when I wasn’t. I also just had a really bad problem with gas because I’m unable to burp. I stopped throwing up frequently around the age of 11-12, but the nausea stayed. It got severe and daily around 14. Now I struggle with constant and persistent nausea that impacts how I am able to eat. The nausea is only helped when I take prochlorperazine. I can only eat small portions, I get full very fast (like within 1-3 bites) and have constant GERD. Like everything I eat or drink comes up for a second taste LOL. I don’t throw up, it’s actually quite hard to (I’ve even tried to make myself throw up) but yeah idk. I was going to get tested but I can’t afford it so I’m waiting until I can. I’ve suspected I have stomach paresis for a couple years now. Eating is a constant struggle.

TLDR; Always threw up as a child, ate small meals, food sensitivities, and now chronic nausea with no vomitting only cured by prochlorperazine.

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 😭😭😭

I’ve been diagnosed for a year now and have had some pretty big ups and downs dealing with this disorder. I have my diet down to a science at this point and I’ve managed to get my vitamins and minerals worked out for the most part through lots of work with my doctors. However I still got the typical always happening symptoms like constipation, gas bubbles, and bloating. Well since it’s summer time for me, and I have a pool available where I live, I decided to start going swimming just for light exercise and to cool off. Mostly floating around and relaxing. And I noticed something almost immediately after my first 30 minutes of swimming around.

I was hungry

I was wanting food and felt like I had the room in my stomach to eat it. Now I still stick to my diet because I am not a madman, but it was amazing to me how much more comfortable I felt eating when it didn’t feel like my stomach was already half full. And then today, I was having lots of bloating and felt so tense in my stomach. After swimming for a while, it felt like a lot of that pressure was relived from just moving around in a place that’s easy on the joints and easy to move around without feeling like you’re using a ton of energy. I don’t know if it will help others or not, but I was surprised how much just moving around in the water helped soothe my stomach and temporarily relieved some of my pain.

A win is a win

I've got it after a surgery and people say there is no cure to this, and it's really disappointing me, is that real?
the big issue i'm facing my meds are now working or works very late and it's makes me insane

I (16f) just got disgnosed w gastroparesis last month. I also suffer from Endo, pcos, AUDHD and BPD. All of my previous safe foods absolutely wreck my stomach and any of the safe foods for my gastroparesis are an absolute sensory nightmare and make me wanna throw up as soon as it touches the back of my throat or fills my mouth with the texture, it just gets so overwhelming and unpleasant and I get so nauseous. Some times I’ve even thrown up just trying to eat safe foods, but even if I don’t it’s still hell. I’m losing weight like crazy, I’ve lost ten pounds just in two weeks. Who knows how much since symptoms started. I don’t eat more than a snack a day or maybe a meal if I’m brave and I just chug water when my stomach hurts because my dad never gets food I can eat comfortably. He has gastroparesis too so the house is full of safe foods for him, but nothing is sensory friendly enough for me. I really don’t want to bother him with it because he’s already a single dad to three kids, two of which are disabled. And on top of that he’s a medically retired veteran. We don’t have the money for me to be this picky but I genuinely can’t help it. I’m so hungry all of the time it hurts but the thought of eating anything I have that’s good for my stomach with this condition is just about worse than the pain. It’s so much easier to just lie here and let it consume me. I’m so tired of the pain, I already had enough on my plate and then this started happening. I can’t even take my mental health meds right now because they affect my appetite and make me flare more so I have to wait till this gets figured out cause it’s so new. All I do that helps at this point is take dicyclomine, hydrocodone, and zofran religiously and smoke my lungs out. Yes, I know, not healthy, smoking underage is illegal, but I’m completely cornered here and most of the time all the food intake I get every day is when I’m high. Also, being high in general (as long as it’s not too much) just calms my whole body down and makes it so much easier to function. It helps me not bedrot all day, I kinda have a social life and a boyfriend I’d like to try and keep up with, even though I barely can. I just don’t know what else to do.

Also, is it normal to feel like absolute shit during the day but feel fine at night with this stuff? My nausea and cramping is usually null and void at night and comes back again around the morning when I wake up or basically once it gets bright out if I stay up all night. I think it’s really odd that it feels almost scheduled, anyone else deal with that?

i havent been drinking recently at all and everything else is looking healthier but my gut is just ruined. i'm out of work today because i simply cannot stop throwing up no matter what i take for it and i'm just curious if any other drinkers have had this issue. also i go like 2-4 days without using the toilet now it feels awful, when i was drinking i'd go every other day at minimum.

Does anyone still eat raw produce here? Fruit is the only thing I actually enjoy eating and I love a crisp salad on good days. I just found out that we aren't supposed to eat it though. This makes sense to me as many of my flare ups and periods of pain were caused by fruits and veggies, including a very bad one today. However, I didn't even correlate that it was the produce cause I thought that fruits and veggies were good for me like they are for everyone else. I'm very upset and i dont know what to do. If I can't even eat the only foods I like, i just want feeding tubes already. I'm sick of forcing myself to eat only to still not get enough nutrients. This sucks ☹️

I accept my fault, i started with 0.25 dose, then i jumped to 0.75mg and handled it well, i then ended up taking 1 mg dose a month later, after that being over confident for weightloss. First day i started vomiting badly went to ER they gave metclopramide injection. for whole first week i had severe nausea, burping fullness to the point i couldn't drink or eat anything at all. i went to emergency 5 times in 10 days. They put me on iv electrolytes drips. cause i cant eat or even drink. Yes i cant even keep water in i am in very bad state.. nothing is improving. Its 14th day i asked doctor to admit me, i stayed 2 days in hospital , the doctors giving me same medication, omeprazole, metclopramide and iv. doctors arent taking it serious just putting me on ivs and metclopramide inj.. my nausea and fullness is still bad i cant drink water, very less and feel extremely nauseatic and food is out of question. nothing seems to be improving. Please if someone has similar case or suggestion please help. When will i heal😓😓😓 i cant take it anymore its too bad..

I was diagnosed last year with severe gastroparesis. I've been chronically constipated my entire life and have been dealing with GP symptoms for years. I just never noticed a pattern or, maybe, never cared enough to figure it out. Linzess stopped working. Motegrity gave me 3 weeks of hell and then stopped doing anything. Botox didn't work. My doctor refuses to put me on Reglan for fear of developing dyskinesia. I need twice weekly IV fluids and can't eat more than once a day. I'm in pain 24/7, none of my clothes fit because I'm so bloated all of the time, and it feels like there isn't a food out there that won't make things worse. I feel ugly, disgusting, uncomfortable, and exhausted. There's constantly air trapped in my upper abdomen that doesn't go anywhere because I also have R-CPD. Constant, dull pains in my stomach area. Sharp, stabbing pains randomly throughout the day. Gastropathy from chronic NSAID use and iron tablets, but no one will take me off of these medications and the hematologist refuses to authorize iron infusions. I'm suffering and miserable. I can't eat the foods I want to eat, wear the clothes I want to wear, or even do the things I want to do. I've tried the OTC stuff and nothing works. Miralax does nothing unless I down the entire 510g bottle in one sitting. Gas-X makes the pain 100 times worse. Peppermint oil doesn't work. I just want to be comfortable in my own body. I really don't want to hate it, but I do. It hurts, it's ugly, and nothing I do works.

Looking for a bit of advise/opinions. Another long post 😅.

I've posted on here a lot but for a bit of background:

Type 1 diabetes since age 11, now 24(f), from the UK. Not currently diagnosed but going through investigations, been unwell since 27th April. Only symptom really has been nausea. Blood tests, stool samples and endoscopy came back clear. Lost 7kg from the 10th may - 12th of June. Next steps are a GI clinic and GES referrals.

Tried cyclizine, metoclopramide, prochlorperazine already. Now on Domperidone since the 12th June.

I have steadily increased my intake from a couple rich tea biscuits a day, to this:

8:30am - 1 crumpet, 1 laughing cow extra light cheese triangle, 2x rich tea biscuits, 100ml ensure plus. (341kcal, 8.3g fat, 1.6g fiber)

10:30am - 2x rich tea biscuits, 110ml ensure NutriVigor with 20g skimmed milk powder, small coffee. (269kcal, 6.4g fat, 1.8g fiber)

12:30pm - 80g cooked pasta, 20g tuna, 1 small slice of white bread, 100ml ensure plus. (366kcal, 6g fat, 2.3g fiber)

15:30pm - 1 crumpet, 1 laughing cow extra light cheese triangle, 110ml ensure NutriVigor with 20g skimmed milk powder. (Same nutrients as breakfast)

18:30pm - 80g cooked pasta, 20g tuna, 1 small slice of white bread, 100ml ensure plus. (Same nutrients as lunch)

21:30pm - 2x rich tea biscuits, 100ml ensure NutriVigor with 20g skimmed milk powder. (230kcal, 5.1g fat, 0.5g fiber)

Around 1,800kcal a day.

Today, I've had an appointment with a DIABETIC dietician. Who's said I've to reduce my ensure drinks to only 2 bottles a day instead of 3, change my laughing cow extra light triangle to the normal fat content one, increase my 40g total tuna a day to 120g, adding in a bit of mayo too, introduce small amounts of fruits and veg, and have a glass of WHOLE milk in the morning and mid-day snack instead of my ensure.

She's aware I'm currently under investigation for gastroparesis, but none of that sounds very gastroparesis friendly to me 😕.

What would you all do?

Thank you if you read all of this and take the time to reply 🫶

ok serious post now. I've been struggling with this question for a while. what counts as tolerating it? is it if I'm able to function without debilitating symptoms after a meal? is it if I can keep it down? I have an elliptical/cross trainer machine, that I am able to use if the conditions are perfect (comorbidities), that allows a certain amount of food to move through my stomach. if I don't do it god knows the food will sit there for the whole day. but if I say to my doctor, I can tolerate a small plate of rice and tofu, that doesn't account for the fact that I have to do at least 10-20 mins of elliptical/cross trainer afterwards or I'll feel awful and everything will traffic jam at the top of my stomach...

My doctor just prescribed it to me and I was curious what experiences were like. I'm not having a lot of luck looking online for what to expect when taking it specifically for gastroparesis.

Hi all - so juat to jump right in. Diagnosed GP around 2021. Have been fighting this illness now. Weight changes of 50 pounds regularly uo and down. When I go into episodes they have been getting so severe that one im passing out from exhaustion amd my S/O and ir best friend has come to my apartment to check on me and found me on my floor passed out eith a vomit bucket next to me. My body has been having such strong responses to the nerve input that the last couple trips I went in they ran a full drug screen bc my body looked like I was going through withdrawals. The doctor looked right at me and said he could give me anything until they ran a drug tox. Obviously they didnt find anything and ended up giving me the meds. Iv had to be taken in via ambulance 2 times now with in 60 days.

Does anyone else have a medical dog? Iv been looking at getting a medical alert dog for like deep pressure therapy and to help when I go into a full on episode being able to grab meds and my phone or even alert if im going to faint. As iv now fainted and passed out 5+ times in the last 2 years im assuming due to rhe illness as they haven't pin pointed any other reaosn. I am also pre diabetic and have been fighting that from childhood. Woke up at 7 Am this morning because my CGM alarm on my phone was blurring. Blood sugar plumiting was at 69 with it 3 min of me waking up and getting the energy to gwt up I dropped to 62 and it was still decreasing. Any tips or recommendations would be amazing.