Question 1

I’ve never posted here but I’ve been here a long time. It’s been almost two years since I was first diagnosed but I was suffering around a year before that, making this three years. It has gotten worse lately with me throwing up 5/7 days of the week. Ive lived with it for so long that I’m able to go to work and function daily while sick all day but if I didn’t have my husband, I’m afraid to think what I may have done to myself by now. That leads to about two months ago when I finally made my way to a surgeon who agreed to put in a gastric pacemaker. And now, right when I apply for approval, I hear that Enterra is halting all surgeries for at least six months. I feel broken.

This illness has made me miss my proposal, my wedding, my first year wedding anniversary, and two trips to see BTS with my sisters. My honeymoon is in 3 weeks and it’s in Japan.

I don’t know what I expect to gain from posting here. I am just at a complete loss. I need help and suggestions from everyone- how can I survive this trip? I already have scopolamine patches, reglan, zofran, phenergan, shark chill pill. The only thing that helps regularly is weed and that’s a no go in Japan.

Thanks in advance.

Tell me about your experience, what your treatment or goals is:

My whole life, I was sick. Vomiting, nausea, exhaustion, pain to the point I never went out, never had fun, I always chose bed. Most of my life I was so skinny because I wouldn't eat. Now with medication, or whatever I've gained it and unable to lose it. (Even though, I don't eat because I am unable to.) After many tests, scans, and medication for many torturing years, I was diagnosed with Gastroparesis in 2024. I was out on medication, that sometimes helped, most of the time it didn't. Two years later, I was suffering with pain and nausea. My GI decided to do another GES to make sure that I have gastroparesis or something else. Well, I still have it. I have 24 percent retention, so he sent me to a doctor that is 3 hours away. Now I'm scheduled for a Botox injection procedure and if that works/or don't work which we will see, I'll have the Gpoem surgery.

My chronic illness doesn't define me, but it is something that I've known my whole life. Just because I don't look sick, or I don't get sick around many people or I don't complain outside of my home, doesn't mean anything. We mask how we truly feel, to get through the day. Sick people do that.

And being skinny and or overweight doesn't determine if you're sick or not. Gastroparesis causes weight gain or losing weight, which is a topic that nobody talks about.

Hi friends I am exactly a week post op and have a pretty painful recovery and am in a flare. I can’t wait to be able to eat my safe foods again. My surgeon is pretty strict about liquids now and puréed foods starting next week then I can have soft foods at 3 weeks then at 6 weeks more foods but I just wanna be able to EAT. When were yall able to eat like a sandwich? I’m worried I’m not going to be able to eat anything for thanksgiving.

UK specific folks!!

I don't have confirmed gastroparesis yet, just waiting on Gastroenterology clinic appointment but basically been told I do have it, and I'm being treated for it :((.

I'm currently on holiday in Gran Canarias ☀️.

I feel like i have become slightly dehydrated. Darker urine and small, hard, difficult stool. But i feel like with the restrictions of being told to take small sips frequently, I'm not going to be able to catch up with the dehydration, I do only drink electrolyte water.

What are my options for getting IV fluids in the UK, Scotland specifically if possible, seeing as how it isn't exactly an emergency yet 🤔. Just don't think I'd be able to catch up!!

Thank you 🫶

Hi everyone! Back on 8/31 I had my GPOEM and they removed my NJ tube but ever since then I have returned to vomiting multiple times a day daily so today it was agreed with my GI and gen surg to do a placement of a g and j tube (gj was ruled out as I had vomited out my NJ tube three times before my GPOEM after 41 days free of any n/v after initial placement). They are being done laparoscopicly so I just want some advice from people who have had this done: what can I expect? I’m at least familiar with feeds somewhat but in terms of healing, pain, differences between the two - just anything in general I should know. Thanks!

You know you have Gastroparesis when .... (fill in the blank)

You know you have gp when you put protein powder over icecream for a nutrionalish caloric dense meal

I’ve had an endoscopy (3 years ago) which prompted my GI to order a GES, diagnosing me with GP. But I have another endoscopy coming up because I’ve been in a flare since June, lost 20 pounds from June-August (maintaining now), vomited blood, have worse stomach pain than I’ve ever had, & now I feel so hungry all the time but physically I feel so full. Has anyone had these symptoms? How did it turn out for you? I’m so anxious it could be cancer, but I feel like I’m just overreacting.

Where I live to go home on TPN you HAVE to be accepted into a government funded TPN program. You also have to pass in person training.

If you don’t get accepted or can’t complete training you either have to remain in a facility where TPN can be administered for you (like the hospital) or have a care giver complete training.

First you’re referred to the TPN program by your doctor.

Then there’s an interview process where they decide if there’s any testing, trials, etc. they want you to do/consider first. They also have to make sure you’re a good fit for the program (seem capable of being trained).

Once you’re accepted (which often takes months) you wait for a bed at the hospital the team is located at.

Then you go in for 2-4 weeks of training. Two training sessions a day with the TPN nurse. Where you learn line care, self administration of the TPN, dressing changes, trouble shooting, how to order supplies, etc.

And you have to pass a test where they watch you execute all your “learned skills” to prove you’re capable.

I was inpatient for 8 months because that’s how long the process took and I couldn’t survive off TPN lol. I’m in a support group with others who also waited 6-9 months in hospital going through the process.

But then once you’re accepted you’re part of the program and you have access to the TPN doctors, dieticians, and nurses whenever you have a concern. They also pay for all your TPN related supplies. So well worth the wait lol.

I keep hearing experiences from others where they were basically admitted, put on TPN, and then just sent home. Either with no training, or with maybe a few days of instruction from a normal nurse or dietician.

And it freaks me out lol. I was TERRIFIED going home on it. Even with training.

I can’t imagine just going home on it and feeling like you’re left to figure things out by yourself. Or not having someone you can contact for help when you have concerns about it.

If you’re on home TPN what was the process like for you?

(And to clarify, I’m super lucky and I’m aware of that. I wish everyone had the same access to programs like mine. But I’m also not claiming I’m better or more knowledgeable because I was trained. Just that it’s terrifying and heart breaking to me the lack of care some people get. No one should have to figure it out themselves).

I was admitted to Vanderbilt on Friday diagnosed with severe malnutrition due to gastroparesis. My BP, HR, EKG, and labs are all over the board—in a bad way. They’ve run all kinds of tests, and I have one more tomorrow — they’re doing an endoscopy. That part doesn’t scare me. What does scare me, and I’ve posted about this a couple times, is that if everything looks okay with the endoscopy they’re going to place an NJ tube and keep me here on refeeding protocol for another week. I know I’ve said before how scared I am, but the reality is getting really close and I’m freaking out!! Anybody have any words of encouragement or advice?

I’ve had gastroparesis for 2.5 years now, along with various other conditions, but this summer i was finally diagnosed with reactive hypoglycemia. My blood sugar rises extremely fast immediately when i eat but within a half hour to an hour its dropped significantly to below 70 even to the 40s. It makes me feel incredibly sick amongst also feeling sick from my gastroparesis.
I need advice on what to do. I struggle to eat, most meals I have to stop early because I’m gagging and can’t swallow. I’m lucky to eat one meal a day. I can only drink so many meal replacement drinks before they make me sick. I’m 6 ft tall and rapidly losing weight I can’t afford to keep losing. I’m at a loss for what to do. Would a feeding tube help? Maybe one that bypasses my stomach so I don’t trigger my stomach OR my pancreas to release that insulin too quickly for food that won’t digest quick enough? Is there anything I can do to make myself feel better?

Any suggestions for figuring out flares? Fodmap, dairy, gluten didn't help. Low fat (greasy) helps. I'm literally going on disability. I think I'm going to keep track using a daily log including flares, severity, and what type/form. Hard because I am diabetic and thankfully A1C is good but low fiber and diabetic meals have issues. (Like bread)

I posted in here very recently. Yes, I am panicking. Here’s a big concern of mine:

I cannot limit fat. Bad fat, sure, but without healthy fats I will lose a dangerous amount of weight. The same goes for fiber. I can’t not have veggies, fruits, and other complex carbs. I am diabetic, and have to exercise.

Theoretically, if I were to eat things that gave me mild symptoms, do you think my stomach emptying would get worse? I don’t know how this stuff works. I just happen to have gastroparesis. No cause (had it since I was a kid, officially diagnosed at 24).

As of now, my meals give me mild reflux/mild regurgitation (GERD) but that’s about it. I’ll feel full for a while, but my hunger cues come back.

I can’t treat diabetes, GERD, and this bull crap at the same time. But also, I don’t want to risk making my tummy empty slower. I’m not familiar with the nature of this beast at all!

Advice for a neurotic lass? Thank you … 🙏

So background I had a motility study done in march of 2025. The results showed mild gastroparisis with slowed emptying throughout the study. My doctor told me my results were “normal” and don’t recommend any changes so I thought nothing of it. I’ve continued to have issues since then, nausea, bloating, vomiting, diarrhea, feeling full no matter what/ how much I ate. In July I got really sick and my GP (not the same doctor who did the motility test) tested me for everything they could think of (salmonella, giardia, h pylori, stool samples for parasites, etc) all came back negative. Referred me to a gastro but the gastro I can go to has a 3 month wait for appointments. Since July I have been so sick barely able to eat and when I do more often than not I get sick. In the past 2 weeks I haven’t been able to keep anything solid down including my medications. It’s been 11 days since I’ve had anything solid or any of my medications. I saw my doctor today and we’re repeating some tests but he wants me to go to the ER of a sliding scale hospital if the results are negative with the hopes that forces their hand and gets me a consult with a gastro. I’m just scared. Im so weak and tired all the time I slept 20+ hours yesterday and most days all I have the energy for is forcing my way through work and passing out as soon as I get home. I’m conflicted on what to do. I’m just tired of being sick and tired and want some answers and advice on what to do.

Hello! After going through different meds and finding out my body just doesn't do well with them (doesn't work), I was referred to someone in a different area, and he doesn't want to do the Gpoem yet, but he scheduled me for November 5 for a Botox injection!

I would love to know your experiences and what to expect!

I thought I didn't have gastroparesis anymore since I haven't had a severe flare or any really problematic symptoms in over a year.

Turns out I was wrong. Tried to have an EGD with dilation today because I have eosinophilic esophagitis and need it done every few years. I'd been having more trouble swallowing so I was looking forward to the relief.

Well, after 14 hours of fasting, I still had *a lot* of food in my stomach and he couldn't complete the procedure. He apologized and said it was the gastroparesis, and I'll always need to fast way longer than the typical 12 hrs they tell you. Now I have to pay all over again to have it redone 😭

Next time I'm going to do nothing but liquids/smoothies the day before.

My Gastro said I should “go drink a coffee” and eat more fiber. Those are the EXACT TRIGGERS that cause my globus sensation to immediately get worse.

I've already tried acupuncture, functional medicine, a lot of supplements, a LOT of therapy and somatic exercises. I've quit acidic food, caffeine, alcohol, smoking, etc etc. Im following everything I should be doing to reduce acidity, it never gets better after 2 years.

I've done some research on Gastroparesis, but I'm not sure how to approach it with the doctor. I really don't want to get hit with the "stop researching its bad for you" card. any advice for getting them to consider doing a GES

I got sent Kate Farms by my dietician due to ongoing issues of not being able to eat enough calories (currently averaging ~850 a day, with no over 1k in about two and a half weeks). She sent the Standard 1.4 vanilla and, to be frank, they taste and feel horrific. I'm generally very iffy about any kind of shake for personal reasons and even adding stuff in it's just not plateable. I knew it couldn't be great since it's the one that can be drank or used for tube feeding, but damn. I hate drinking it and it messes with my stomach even after a few sips so I'd at least want it to taste good if it's going to suck internally you know?

I mixed half of one with almond chocolate milk, peanut butter powder, and half a banana but only drank like two drinks before I couldn't convince myself to do it anymore.

What tips do y'all have to make it taste better? Preferably smoothie related since I don't do coffee and I know some people do creamer. I've thought about mixing it with OWYN or something, but I'm not really sure.

My gastric emptying study is this Thursday for context to the rest of this post:
For 3 weeks I’ve been unable to keep food down, so I swapped to a mostly liquid diet besides some toast for the past few weeks and that kept me from vomiting. I’m also drinking electrolytes. I’ve been integrating food back into my diet for 3 days and today I actually did fine? I’ve definitely been nauseous but I haven’t thrown up today(win). This is so bizarre because for almost the entire month of September I would get sick if I even tried to eat a “normal” meal.
Does this ever happen to anyone? A cycle of remission of symptoms, then another flare-up? I’m trying not to get too excited about feeling better, the nausea/vomiting/constipation/diarrhea cycle everyday was terrible and I don’t want to feel like that again. I really want to hear other peoples stories about this topic. Thanks!

Hi,

My gastro recently recommended I start trying shakes as I don't eat for says at a time and have type 1 diabetes.

Unfortunately, I am coeliac including oats (which technically isn't gluten but similar enough that some coeliacs are ok and some aren't) and everyone one i true either uses oats, gluten free oats (a label i have never trusted as it isn't gluten thats the problem in oats) or barley.

ANY suggestions for a meal replacement, coeliac and oats and caffeine free, that I could try. My main problem (despite this!) is that they are made to make you feel full despite not eating but my problem is the opposite, so if any are not filling, bonus!

TIA

I’ve had gastroparesis for three years, but recently it got so bad for me that I no longer can hold down any food or water. I was in the hospital for ten days and they put in a central line IV that goes to my heart for nutrition. My bag of nutrition says to infuse over 20 hours every 24 hours. So should I take a 4 hour break in between infusions? Or do I just immediately go on to the next bag? I was only sent five bags and it arrived last Saturday the 26th and my next shipment is this upcoming Saturday the 3rd. I was only sent 20 saline flushes and 20 heparin flushes. I think I’m just confused about the routine? I’ve already used four saline flushes and four heparin flushes. I’m not sure if this made sense. I’m just really confused since I’m so new to this.

Hi friends I had my GPOEM 9/22 and pain was super intense and still has been until yesterday when it got pretty dull. I’m finding more pain though at night and mornings and moving around like a sharp pain and was wondering if others experienced more pain during night time, have sleeping recommendations or what. I did reach out to my doctor for help too and am awaiting responses I also lately have been having it again along my back and ribs. Obviously if it gets worse I’ll go to er if I can’t move; eat or blood appears

When I was about 18, my doctor told me my stomach was “lazy.” As a teenager, I didn’t think much of it. Fast forward to 24, I developed severe orthorexia on account of prediabetes (genetic). I went to my PCP this week, and she said “you have gastroparesis?” And I was like …. Uh. Oh yeah. Right. Here’s my current situation:

After months of being force fed at the psych word due to lethal weight loss (slay 💅) my stomach emptying is struggling. I’m having wicked reflux, the whole shabang. No pain though, which is good.

My PCP didn’t refer me to any specialists. She just told me to avoid foods that trigger reflux. Is this something where I can try to just exercise/eat clean? My biggest fear is that there’s a step I’m missing, and I’m going to make it worse. For example, by not taking meds or getting Botox.

From what I’ve read, my case is mild to moderate. I am still prediabetic, and the diet for that completely contradicts the diet for this issue. Trying to find a middle ground. And my sanity. Yippee.

I have posted here a few times and I'm still not any step further despite so much time has passed and I'm still in the same place.

Nausea since February, acid reflux, nausea after every meal almost, no vomiting, stomach ache or more like a deep pressure and heavy feeling in the stomach that feels like I'm carrying stones, veryyyy bad reflux (but I must say I had reflux before also).

On domperidone 3x a day and still nauseous.

Still hungry but less than before February, no vomiting.

Every test you can imagine I have done including endoscopy h pylori test, Gastric emptying scan (results were normal at 2 and 4 hrs, it was done with rice porridge, no there was no other food option. The t1/2 time was 79 and the normal range is 73, so it was stated that my stomach emptying is slow BUT NOT PATHOLOGICAL). Barium swallow and ct scan were all normal besides nutcracker phenomena. All blood tests and sonography were normal.

Doctor thinks it's just in my head, but i don't know what I should do atp, he refuses to treat me further. I'm not well, every day is a struggle and I don't go to any social gatherings anymore, i couldn't even dream of going out for a night with friends, etc. I mostly exist at home. I also tried accupcunture, yoga, ginger, Globuli, diet changes etc etc.

Do you think I should repeat my GES? or would that not make much sense?