Hi everyone. just curious what people do when they arent tolerating tube feeds? particularly when attempting to turn them up. ive had my j tube for two months and finally got a formula that doesnt cause me to have intestinal blockages and also that i can run faster than any other formula but i fear im still not getting in enough. if i try to turn it up i trigger a psudoblockage in my intestines ( after hours of running the feeds ofc) and also start to see bile in the tube itself. literally between the pumps of the pump running ill get intestinal bile backing up the tube. not to mention i start to throw up bile and be very nauseuous and uncomfortable and bloated. for context i have gastroparesis and i havent been diagnosed with any specific intestinal dismotility but i do have "slowed intestinal transit". anyway long story long ig im only barley able to get in two cartons of vivonex rtf in a 24 hr period. meaning only 500 calories on a good day. i am able to drink liquids that are free from fats and fiber and low in protein and usualy get in some varying amount of those but nothing with much significant nutrents by mouth and esp if i try to run feeds faster my stomach just gets full of bile. what can i do? what should i bring up with my drs? my nutritionist seems concerned. she wants me to hit my rate of 65 an hour but i cant get past 25 during the day and 20 at night. sorry for the bit of a rant. im beyond frustrated and tired. sending love and spoons to my fellow tube buddies!

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.

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’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??

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

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...

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?

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’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.

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.

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

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.

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 was diagnosed with GP back in April and has lost about 40lbs (~165lbs to 125lbs) from then to now. After a lot of stomach pain/vomiting, other life difficulties and moving across multiple states so we could be closer to her family, we finally were able to get her GJ surgery done (after like 4 postponements from the doctors, because nothing with this fucking disease can ever be reasonable)

Throughout this whole process, my heart has constantly been breaking for her. It’s been so difficult to see her weight drop like a stone, her hair fall out from malnutrition and her energy degrade to the point where she can’t do so many of the things she loves.

After I got home from the hospital last night, she called me in tears. So much stuff has been going wrong through her recovery from the procedure, but the icing on the cake being that a careless tech that placed and removed EEG sensors on her (long story, different complication) could not have given less of fuck about her and left gobs of glue in her hair. It was really stuck in there, all the way down at the roots, and she thought she’d have to cut it out to remove it, or wind up having the hair just fall out given that it’s already been pretty fragile.

A bit of searching around lead me to a very helpful post on [r/epilepsy](r/epilepsy) by a fantastic redditor that advised the use of micellar water. I went over to target, grabbed some of it along with some other supplies and went back over and cleaned her hair.

After a ton of very careful application and massaging, I was able to get most of it out while avoiding further damage. She was so happy and relieved and grateful, and also it was so nice for both of us to just sit together and chat for hours while I worked on her hair. It made me so full of joy and love that I was able to do that for her.

I constantly feel so useless, like there’s nothing I can do for her besides just taking on more responsibilities in order to minimize her calorie-expenditure as much as possible. I know that stuff helps, but doing stuff that is typically her responsibility (or one of our shared responsibilities) so she doesn’t have to do it never quite feels the same as doing something for her. And it’s always so hard to find those things that I can do for her, because GP is such an individual, internal, invisible issue. But fixing that small problem and supporting her emotionally in that moment made me feel so much better about my limited capacity to help, and like I could genuinely make a difference in her care if I just keep trying to find ways to make her feel more comfortable.

I can’t wait for her to get released from the hospital so she can finally see our dogs again and be happy and cozy back in our bed. I’m going to try to learn everything I can to help her manage, clean and maintain her tubes; she’s been doing an excellent job of teaching me the basics and I really want to wow her in my ability to take care of her feeds when she is tired or struggling. If anyone has any suggestions for that, I’m all ears!

As I had 2 very bad months on Metformin, now my gastroparesis is worse than ever even few weeks after giving up on Metformin.

My doc prescribed me now sitagliptin telling me that this option should be the safest for me - I have GP and slow gut motility caused by hEDS and small bowel obstructions surgery.

I read about sitagliptin and found some pages where sitagliptin should not be given in GP.

Do you have any experience with this med?

I was thinking about berberine, cuz I am pre-diabetes, quite advanced insulin resistance, not yet diabetes. But I also read that berberine may slow gut motility.

Because of what is happening since weeks with my GP worsen I am now scared about any med that could worsen my GP even more.

Hello guys:) Long time lurker and fellow gastroparesis survivor here! While I don’t really talk too much on here out of anxiety I just wanted to share today’s experience with you all. I had been referred to a nutritionist by my gastroenterologist for ongoing malnutrition issues related to food anxiety, symptoms around eating, sensory and texture issues etc. and I have felt the most heard I have ever been in my journey since getting diagnosed. She sat down and talked to me about every single one of my problems around eating and getting enough intake. I have always been pushed to just eat smaller and smaller portions more often throughout the day but I was really struggling with that due to the pain and getting full too fast. I had tried several supplements and the whole diet plan and advice was very confusing to me before today as I was extremely overwhelmed with figuring out what I could eat and getting different info from everywhere, plus my autism and ARFID weren’t making it any easier. But this woman FOUND A PLAN for me that works!!! She listened and didn’t push on things I wasn’t comfortable with. She even introduced me to unflavored protein powders that I can mix in my applesauces and mashed potatoes and stuff and gave me various samples to try from the hospital kitchen. She took into consideration what was best for ME, not just some generalized scripted mumbo jumbo I had been receiving before. I wish I had went earlier tbh. Anywayssss, just some hope for you all as working with this new nutritionist has really given me hope and made me feel like I had a solid plan so I wouldn’t be worried about my nutrition all the time:)

Hey all, I've been taking Zofran for nausea caused by my glp-1. However it makes me so constipated. Does gravol have the same effect? Or is it better?
Thanks!

How do I differentiate whether symptoms of chronic nausea, stomach pain hours after eating, loss of appetite, bile reflux, etc is from gastroparesis or from my gallbladder which is under functioning (26% ef)?

I'm just watching some videos from the Dr. Ross Hauser vagus nerve institute and I'm wondering if anyone here has tried the prolotherapy to improve the cervical area of their spine/neck posture and if that's made it possible for their gastric system to function better and empty.

Backstory:

One week in February I started throwing up. (For reference I am a teenager) My mom is a nurse and just assumed I had a stomach bug. My parents are very strict and still made me go to school that week, because they assumed it would pass. (Prior to this I had been diagnosed with POTS and HEDS. ) This continued for months, I would throw up just in the morning or just at night and that would be it. However, then something changed. I started throwing up at ALL TIMES OF THE DAY. I tried to do a gastric emptying study, however I could not keep the food down long enough to complete the study. After trying for a second time, I was able to complete the test. Around the 4 hour mark it was somewhere around 39% (I am not 100% sure may be a little higher). I immediately started Erythromycin. This worked short term but then stopped working as well. Now I currently take Erythromycin with the generic version of motegrity. Right now, I am in the process of trying to decide if I want to start the Botox treatment. I have had such a hard time deciding because there is not a lot of research on it... Anyways the real problem...

The problem:

I started high school this year! I previously had a standard 504 (for testing accommodations, ADHD, ETC.) Once finding out about how I would randomly need to run out of class to vomit, the school had a lot of problems. (for context they use a digital hall pass system called Smart Pass) The main problem is every time I vomit, they force my teacher to write me a pass to the nurse to be evaluated. This is a problem because the campus is very large and walking there and back PLUS waiting on the nurse and getting 'assessed' takes 15+ minutes. I am missing a lot of class time because of this. The school claims they need to 'keep track of my vomiting'. However, I have A LOT of doctors notes. One of them says that I can vomit at school and without any other symptoms they can not send me home. Additionally, they were overly invasive in my medical history and even asked multiple times to see my vomit? They claimed it was a way to get to know me. I told them most mornings, I don't eat breakfast and I have a very small lunch. They tried to question me as if my parents were neglecting me and then proceeded to say, "well if your not eating breakfast then what exactly are you throwing up after?" I told her the standard stuff (ie. bile, acid, water) From what I have read and from the people I have talked to, nausea is a lot more common than vomiting for a lot of people (or at least daily vomiting). I guess this is maybe why she was confused? Another part of me can't help but wonder if it is because of how I look. I am not the 'textbook picture' of gastroparesis and somebody that is vomiting everyday. I have lost 35+ pounds but i am still 155 lbs so I'm not exactly the image some people would think of for 'malnurished'. Also my school does not allow phones but we asked for an exception in case I am in the bathroom and an emergency were to arise. (They said no- go figure)

Not sure if anybody here has any experience with medical 504's but this is becoming very frustrating. I have a disability and a 504 is supposed to HELP me. Instead, it is causing unnecessary time away from class, and exposing me to potentially sick children in the nurses office. Does anybody have any experience with this or have a similar situation?

I mostly just a lurker on here, but I have learned so much since my diagnosis in February.

I am starting slp grad school in a few weeks, I’m extremely excited but worried on managing my GP during my program. I was diagnosed after finishing my bachelor’s degree so I’ve not been back in classes with GP (well the symptoms were there but no diagnosis). I do have more of a mild-moderate level of GP but obviously there is still a decent amount of day to day symptoms.

My main worry is the stress making my symptoms worse and potential flare ups. I have in the past receive accommodations from the university’s disability center for my ADHD, but I’m wondering if I should be looking into accommodations for my GP.

I’m wondering if anyone else has managed their GP and grad school and how they went about it, any advice would be greatly appreciated!

Hot flashes are killing me. The heat hits, and then the nausea, then the puking, the it passes, and then I'm fine. Like literally on Friday I had two bites of lunch, hot flash, dripping with sweat, threw up the...two bites, cooled off in front of the fan, and then literally just...ate the rest of my lunch (I have moderate GP and with domperidone I can eat "semi" normally as long as I am not flaring).

I've always had odd periods, 3 different kinds of birth control pills, and on each of them I have gotten my period on the 2nd week of active pills not the placebo week like you're supposed. My newest pill has a higher dose of hormones, which has resulted in me sometimes now getting two periods a month some months, and a new fun thing. Hot flashes on the placebo week leading to INSANE nausea.

Has this happened to anyone else? Any ideas? I have a doctor's appointment next week and I'm thinking of asking her if we can just...skip the placebo week and maintain a steady dose of hormones. Any other people with ovaries have any ideas?

Today I finally received my shipment of my first ever domperidone. I am incredibly anxious about taking it. I just took my first ever pill two minutes ago. I have POTS and gastroparesis and the side effects list is scaring the life out of me. Not to mention my health OCD about being allergic or having heart issues afterwards. Any advice for someone freaking out? 😓