Question 1

So this is one of the last medicines my doctor wants me to try before pursuing more drastic solutions, and it’s the last because it’s hard to get. Apparently it’s not FDA approved ~~anymore~~, so my doctor is currently investigating some online pharmacies for myself and all of her patients that need it. She hasn’t gotten back to me yet so I thought I’d just ask here — do you have a reputable source for Domperidone in the US?

Please remove if this is against the rules, I read them and the rule update post and didn’t see anything about discussing medication sourcing, and I don’t think this comfortably falls under “medical advice”. This is also an issue that I think a large percentage of GP sufferers in the US would be interested in an answer to. Thank you all for your time,

Hi GP community,

I come to you all in hopelessness and desperation. I have gastroparesis and Sjögren’s syndrome— and recently tested positive for flu A, Flu B, and Covid.

It’s safe to say my gastroparesis has thrown an absolute tantrum, and made it very clear that my stomach is upset. I’m in a bit of a predicament, as my usual flare up “safe” foods are absolutely killing my spirit. As if my body giving out on me wasn’t enough, my spirit is outlined in chalk.

Admittedly, I am not the most adventurous eater, which kind of narrows down my options even more. I’m looking for any recommendations of ways to make getting through these flares easier, or any foods that may typically work for you. Going on my sixth year of having GP now; but honestly the utter hopelessness of constant burning pain paired with hunger really has just taken it out of me.

And not to be a jerk, but my food envy is real. Being brought to tears as I watch my mother eating ramen? That’s a new one. Salads and sandwiches sure… but I don’t even like ramen! Yet I find myself completely soured and beyond jealous that I am relegated to my very bland and upsetting diet. I am opening the fridge, and literally crying because I can’t eat any of the food. I’m aware that some people cannot tolerate eating ANY food, ANY time, but this is my truth. Sorry for the download… and I am not trying to be insensitive to anyone by complaining.

After months of trying to obtain treatment for my gastroparesis, my surgeon has finally agreed to implant an Enterra gastric electrical stimulator. Unfortunately, I'm now waiting for FDA authorization of the newer equipment before surgery can proceed.

My surgeon actually suggested that patient advocacy might help bring attention to the situation.

I know I'm not the only person whose treatment has been delayed. Some patients are awaiting their first implantation, while others may be facing delays involving replacement devices.

I'm considering writing to the FDA's Center for Devices and Radiological Health to explain the impact these delays have on patients' health and quality of life.

To be clear, I'm not advocating for the FDA to bypass safety requirements or approve anything without adequate evidence. I want patients' experiences to be heard, timely review to be prioritized where possible, and clearer information about the regulatory process.

If you're also affected, would you consider sharing your experience with the FDA?

The FDA has a patient engagement email at CDRH_PatientEngagement@fda.hhs.gov and a Patients Ask FDA submission form.

I'd also love to hear whether anyone has received specific information from their surgeon or Enterra Medical about which components are awaiting authorization.

Maybe if enough of us share our experiences, we can help communicate just how important access to these treatments is.

Has anyone tried SunFiber for constipation with gastroparesis?

I hope this is okay to post - I’m newly diagnosed after years of struggling with symptoms. I also am in recovery for an ED. One of the things I’ve found incredibly hard is when my GP symptoms are particularly bad and I can’t eat “normally” and I end up vomiting a lot because I’m trying to eat normally it’s always assumed it’s because of my ED history. I worked really hard for over a year to get into recovery with my ED and it actively infuriates me when I can’t eat “normal” food or have a proper meal, especially as during recovery I rediscovered my love for cooking, so when I’ve spent time planning meals and getting back in the kitchen it’s so annoying I then struggle to stomach anything.

Does anyone have any advice?

Due to the fact that I only had delayed emptying during my liquid GES at 3 and 4 hours (final retention was 24% I think?), and because I don’t get nausea that often (and rarely ever vomit), I’m considered to have mild gastroparesis. However, I suffer from acid reflux that got so bad that it damaged my esophagus. I have ineffective esophageal motility now and I’m trying to heal it as best as I can. I cut out what I could, am taking Dexilant in the morning, famotidine at night, and sucralfate to protect my esophagus. I also take liquid gaviscon before bed. My acid reflux has gotten WAY better, but I still find myself get flare ups here and there. Especially because sometimes I NEED to have a somewhat fatty meal to get enough calories (either peanut butter in a smoothie, Mac and cheese, sour cream mashed potatoes, ice cream, or something else) while on a liquid and soft foods diet. I’m wondering if something like motegrity or domperidone would help with my acid reflux, so the food isn’t just sitting in there. I wonder if it would allow me to try previously thought to be trigger foods as well. I got my gallbladder out recently so maybe I’m suffering from bile reflux, but idk. My doctor said she COULD prescribe one of those meds, but she wasn’t sure it would be beneficial since my gastroparesis is considered mild.

Has anyone here with “mild” gastroparesis gotten on medication? Or did it help those of you whose main symptom is acid reflux?

I'd like to share my success story after healing from a case of post-viral gastroparesis, as I know I spent a lot of time in this thread catastrophising when I was in the thick of it, and I think we need to hear more positive stories.

I know gastroparesis is a spectrum, and everyone is different. My heart goes out to any and everyone who is dealing with this as I know firsthand how awful it is and how isolating it can feel. I am still experiencing severe mental health issues off the back of what I went through.

In March of 2026, I contracted gastro. To begin with, it was all very normal - I spent a Sunday morning spewing and stopped around midday. Unfortunately, my feelings of nausea never went away, and I was all but bed bound for the rest of the week. By the Friday we decided to visit emergency as Ondansetron (zofran) wasn't helping me and I was severely dehydrated. The hospital gave me fluids and Maxolon (metoclopramide) and ran generic testing which came back clear. The Maxolon helped, which now makes sense as I have learnt about prokinetics, and the hospital sent me home advising to see my GP if my symptoms did not improve. As I am sure you can imagine, my symptoms did not improve, and my GP ordered a bunch of tests - all of which showed nothing.

I won't bore you with the finer details, but what followed was months of testing, suspected Chron's, multiple ED visits, an emergency gallbladder removal, two colonoscopies, one endoscopy, 12kg in weight loss (for reference I only weighed 60kg at the beginning of this ordeal), and months of isolation working from home and not being able to do anything aside from sit in a car on random drives and visit my parents' house on weekends.

My main symptom was nausea, all day every day. I took multiple maxolon each day and was told this was safe by my GP (even though my own research said it wasn't). Along with my nausea I also had no energy. I would experience large flare ups where I couldn't stomach a single thing, even water, for days at a time. These were awful and made me feel more depressed than I have ever known. I also found my gastroparesis got worse before it got better.

I finally got an appointment to see a gastroenterologist in June 2026. This was such a huge relief as I felt like I was going crazy advocating for myself and feeling dismissed by my GP who was convinced I had something pathologic (i.e., Chron's) rather than it being associated with my bout of gastro. The gastroenterologist diagnosed me with post-viral gastroparesis, sent a referral to the hospital for a GES, and told me, "The nerves will grow back, it can just take 6-12 months, you just have to ride it out". He also told me that taking maxolon was dangerous and switched me to Domperidone. As this was through the public health system, I am actually still awaiting my GES, so I don't have a formal diagnosis.

It was around the 3-month mark that I finally noticed some improvement. This improvement coincided with me starting to see an acupuncturist. At first, I thought the timing may have been a coincidence, but the more I think about it, the more I believe she genuinely helped me, so much. I started to have an increase in appetite, more energy and became less reliant on my anti-nausea medication. I also found a range of foods that were "safe" for me to eat and was able to expand my diet. I got a new GP who referred me to a dietician and a psychologist. I would still experience flare ups but was actively gaining weight during my good stages which progressively got longer and longer.

I am now 7 months post gastro and would say I am 95% healed. I can eat pretty much anything again, I don't experience flare ups, and I do not take any medication. Unfortunately, I developed very severe anxiety from this experience and am working through that currently. But I am on a gradual plan to return to working in the office, I can make plans with friends and family again, I can exercise again and do things I love such as cooking.

My advice to anyone struggling would be to lean on your support system, never be ashamed/apologise for any adjustments you need to make to suit your lifestyle, advocate for yourself and make sure your health care providers are good (don't be afraid to visit new people if you aren't feeling seen), explore every avenue to help such as acupuncture - the worst thing that can happen is it doesn't help, seek additional assistance via therapy and dieticians, keep looking for low-fat foods that you are able to eat so you can switch your meals up, and find small things you can do to try and continue to experience joy in your life as gastroparesis can feel like it's taken so much away.

I would be more than happy to answer any questions anyone has.

I've noticed that sometimes my stomach feels cold, as if i swallowed ice and it didnt melt on the way down or by stomach acid. Sometimes but not all the time I'll feel it immediately when drinking something and sometimes but not all the time I'll feel it some time after eating a meal. I'm going to keep a log of what makes me feel this way but does anyone else feel this or know what it might mean?

I’m scheduled to get a GPOEM procedure tomorrow morning as treatment for my gastroparesis at the Mayo Clinic. I didn’t know that it’s not an outpatient procedure, & my have to stay in the hospital 1-2 days 😳

If you’ve had this procedure, what do I need to expect? Will I have a “tummy ache” so to speak? Or have to live on a liquid diet for a week so everything heals 🤷🏼‍♀️ Will they inflate my stomach so that I’m gassy for a spell 😛 Idk

I’d appreciate any & all advice!

At Easter 2026, weighed 215/220lbs now I weigh 175lbs today. I see my new gastroenterologist on the 4th but I’m still anxious on the thought of losing over 20% of my body weight in 7 months. Any suggestions or advice to talk with this new dr about ?

How can I give Cleveland clinic access to my health records before Friday?

(Context) July 31 I had a GJ tube placed, it worked AMAZINGLY I even gained weight. Then 7 weeks ago- literally overnight I woke up tasting formula, so I pulled a syringe full of liquid from the g- sure enough it was formula which made me sick. That evening I did the dye test (blue dye into the j to see if it would come out the g) and instantly the dye came out the g. so I thought maybe my tube flipped and went to the ER they did a ct scan and tube was in the right place so they sent me home, after weeks of at least 7 ct scans, and like 5 X-rays which showed contrasts from previous scans over a week apart still sitting stagnant in my intestine, and a colonoscopy. They determined my entire digestive tract is dysfunctional and to send me to Cleveland Clinic.
Cleveland clinic scheduled me for FEBRUARY- like 4 months away meanwhile I’m actively literally starving unable to even tolerate my own bile. Over the weekend a sooner appointment spot opened up— this Friday! But I can’t figure out how to get my medical records to transfer to Cleveland clinic. They gave me a fax number for my providers to send the information to but my team here says they need a request from Cleveland Clinic directly for them to release the information and Cleveland clinic says it’ll take at least seven days for them to put in a request- idk it’s so confusing so if anyone has any advice it would be so appreciated. I have them all in MyChart and I called to connect them all but when I called Cleveland clinic this morning they said they didn’t have access.

I’m not rich or anything— but I’m one of the people with a milder case that allows to work and earn a paycheck. I want to donate a small percent of it each pay period.

I’m eager to hear your suggestions. I’m especially interested in donating to research and patient advocacy but I’d love to hear about anything you all believe in.

Good morning everyone, I have been dealing with gastroparesis for 2 years now. My case isn't as severe as others I have no problem eating alot of stuff the only thing that really messes with my stomach are fried foods and visible fat on meats, I avoid fruits and eat cooked veggies no problem. That being said I recently added pistachios to my diet at night before bed and I know know it's not the same for everyone but I can finally say I've found something that gives me normal bowel movements now every morning. Just wanted to share with everyone my excitement and what has worked for me. Also, I am taking motegrity and raglan daily. Have a great week yall and dont give up!

Have any of you had genetic testing that has indicated the cause of your motility problems?

I have an intestinal birth defect (intestinal malrotation) and my team is trying to figure out if my motility problems are secondary to the malrotation or if I also have a primary motility disorder.

They’ve ordered genetic testing.

It sounds like they’re looking specifically for something (possibly multiple things) that cause primary motility disorders(?) and occur frequently with people who also have malrotation.

I’m not expecting other people to have the malrotation piece of the puzzle lol. I’m just curious about the genetic side of things.

I know people with EDS (which I don’t have) are more prone gastroparesis, which makes sense, but I’m not super familiar with other genetic conditions that do.

I'm getting a gastric emptying study tomorrow and I'm trying to figure out what to expect and if I should bring a friend to supervise my service dog during imaging and such.

I've had issues with early fullness and nausea nearly my whole life and now ive been through ultrasounds and an endoscopy and they said this is the next step.

Hello my favorite community 🫶

For those who have tubes and wheels, do you need your backrest angled back more to be comfortable on your stomach/ be able to digest?

Another question is if there's anything else I should take into consideration regarding gp and wheelchair adjustments.

Any hacks for cord management which attached to ur pump?

Hi

I'm planning to take a trip overseas and need some advice particularly in regards to food. The flights will be between 26-42 hours (with stops). I am diabetic so obviously have to eat but won't be able to eat anything on board (I have a long list of intolerances and don't trust anything they might give to me.) I want to bring baby food but it says that's for babies and I'd need to bring powdered baby food which isn't really possible for me as the only one I can find contains milk. I'm emailing the airlines and asking my diabetes nurse for a certificate explaining why I need them.

Has anyone else had experience with what they can take on long flights? If it helps I'm looking at China airlines and Qatar airways for the flights.

TIA

I've had my pacemaker for a couple weeks, and I get frequent abdominal pain from chronic constipation, and normally I use heating pads and microwaveable stuffed animals to help with the pain, but I'm worried adding heat to my abdomen will screw with the device somehow. I've looked it up and I'm not really getting any straight answers. Does anyone know?

so 8 years into this and i’m the worst i’ve ever been. have had the stimulator for 4 months, i am in more pain than i was, and i am keeping nothing down at all. throughout my whole experience, ive never had a “flare,” i am the flare. it’s rare that i ever digested before surgery, but randomly would. after surgery, i digested normally for a short time (it was amazing) and then i went back to my horrible normal. it feels discouraging at times to come on here and try to read for advice for others but a lot of people experience flare ups and i’m in a flare every single day, it’s not something that will pass or something that lasts a few weeks, it’s my every day experience. idk im just overwhelmed, really weak, scared, and ready for relief. i’ll probably have to get a feeding tube again as im like 100 pounds and continually vomiting. my blood pressure runs low and always is low. it’s just really disappointing that this stimulator worked at first then stopped working for me and sure, a feeding tube will give me back my nourishment which is great, but you’re still starving and in pain from the tube. i just feel defeated, like ill always just be miserable and sick and im really tired. i feel like im never not throwing up and i have no quality of life. i have tried ice cream, drinkable yogurt, stuff like that and hours later ill still throw it up. nothing at all is digesting, sometimes my drinks don’t either and this is how i was years ago before i got my first tube. i just can’t keep doing this. it’s a bad cycle of puking but then being starving so you battle between puking and eating so you eat then puke and it never stops. this isn’t a way to live. i’m back to feeling like im watching everyone else live and my life is just dwindling away. i really need my drs to figure out what’s going on cause im just sitting here sipping water

How do you all take naps?

I post a lot, sorry 😅.

I don't sleep well at night, or for long enough. I've never had good sleep and used to take Trazadone for it, but didn't like the way it made me feel!! Antithesis my sleep is better than what it was back then.

I don't sleep well because of the wedge pillow I sleep with. I can't get comfortable on it, so i struggle to get to sleep, then wake up through the night. I read somewhere that it is meant to help with nausea, and although my nausea is far and few between since starting domperidone (13th June), I'm too scared to sleep without it.

I don't sleep for long enough because of the waking up through the night and the fact I need to take my domperidone at 8am (up at 6:30am-7am on work days), then 11pm (10mg, 3x a day). I also have my last meal (liquid meal) at 21:20pm so I can get in enough calories, so stay up for AT LEAST an hour after that.

I can't nap because of having to stay upright after eating, but I'm eating every 3hrs to get in enough calories 😭.

I'm new to this, i got unwell on the 27th April, and I just want some good sleep!!

Male in my 30s, new to all of this and wondering whether anyone here with gastroparesis experienced similar symptoms:

Acid reflux
Feeling less hungry than usual
Sometimes feeling like food comes back up into my throat
Occasional stomach pain
I haven’t been diagnosed with gastroparesis, and I’m wondering whether stress/anxiety could be contributing too.

I recently had a colonoscopy because of a family history, and thankfully nothing concerning was found. I haven’t had these upper digestive symptoms investigated yet.

Not looking for a diagnosis here—just interested in other people’s experiences. Did anyone start out with similar symptoms, and what did your doctor recommend as the next step?

Hey yall haven’t posted in here before but I need some advice.

I’ve had GP for awhile so random freezes in my digestion isn’t uncommon but I haven’t had a bowel movement for about three weeks. Naturally, I went to the ER and they didn’t find any blockages so they sent me home. My doctors have put me on so many laxatives but they only make me sicker. I really don’t know what to do at this point since laxatives don’t do anything but build up water in my guts. (No not diarrhea, just water) I’ve tried enemas and they don’t stimulate anything, in fact it just kinda gets stuck in my bowels for awhile so I try not to use them.

I’ve had some luck on reglan but that barely does anything unless I get lucky. Helps the nausea ig.

I’m really at a loss here and I don’t know what to do. Solid foods are becoming intolerable, idk what else to do other than liquids and praying I have explosive shits when I wake up magically. Do I go back to the ER and demand they drain me via tube? Do I just sit and wait? What works for yall, anything helps. Thanks.

I have been diagnosed with Dysautonomia, MALS, and gastroparesis. I have been in a terrible flareup since this summer. The last two or three weeks, however the pain has become debilitating. I’ve been experiencing burning and a deep ache on my left side from where my stomach is up to my ribs that then goes through to my back under my ribs and down my left side. I went to the ER yesterday thinking maybe it was a kidney stone or something like that because I’ve never experienced pain in these exact locations and at this high of a level. Of course, all the tests came back normal. Has anyone else experienced this type of pain?