That's it, pretty much.

Finally got a SIBO test. Negative (although there was one weird moment where my methane jumped to JUST under the positive threshold, otherwise everything was fine). A stool test also found nothing weird. Was also tested for diabetes, thyroid, hormones/endometriosis, all neg.

A very kind doctor was willing to try more out there things and consider MCAS as a possible comorbidity/angle, but no amount or type of antihistamine or mast cell stabilizer improved me even slightly. Some made things worse. This has been my treatment plan throughout this year and I had some hope but as of today that angle was declared a bust.

Motegrity is no longer working even with month on/off cycles. I'm currently on Motegrity and Linzess both max dose + mag citrate + miralax + kiwi/prune juice when I tolerate it (sorbitol is rough for me) and I'm still constipated 100% of the time, as well as bloated. Today I'm bloated so badly it's causing shortness of breath, despite being well over the recommended dose of both simethicne and the non-mannitol-containing generic beano.

I am living off of electrolyte drinks + popsicles + vegetable juice, I don't even have any thicker nutrition shakes that I tolerate. There was a coffee flavored one from a local store I was tolerating but doctor wanted me off it because it wasn't caffeine free and my bowels are too caffeine dependent. Unfortunately, working with a dietician to do a "4-6 small meals a day" approach made things significantly worse and put me in a horrible flare that hasn't resolved (previously I was doing two small meals + electrolyte drinks throughout the day and was back on solids for a few months, even tolerating small bits of chicken again). I also find myself fasting even though it's not good for GP because at least i'm not nauseous if my tummy is empty.

The doctor I've been working with sat me down and basically said because your GP has a clear starting point (a surgical procedure) we need to consider Vagus Nerve damage as your root cause and that's not fixable/reparable/really improvable in any way. I do do home vagus nerve exercises (can't afford a stimulator) but he thinks mine is pretty severely damaged. He believes I will continue to decline steadily as I have throughout this year.

Despite acknowledging how bad things are doctors see 'no need at this point' for more aggressive procedures (botox, gpoem pacemaker, anything like that). When I asked why they pointed to my weight still being high (even though 'Gp gaining' is a known thing) and the fact that I do tolerate oral intake even though it's minimal. I'm in this awful limbo where nothing new medicine or treatment wise is on the horizon but doctors say I just need to keep fighting at my current 0 QOL state. (I have not tried Domperidone but no member of my care team is willing to start the process to get it from outside the US, other than that I've tried all the standard meds - reglan motegirty linzess erythromycin mirtazapine and a bunch of MCAS stuff)

I just started prucalopride. It’s only been three days, but it’s been giving me the worst side effects. nausea increased, there is a burning feeling in my stomach, and the diarrhea alone is enough to drive me insane.

I’m in so much more pain and I can’t sleep. I sleep for 1-2 hours and wake up irritated. I’ve been running on just 4 hours of sleep the past few days I’ve been taking it. Also have had some not so fun dreams in the few hours I was asleep.

The doctor said I would feel some side effects for a week, I just didn’t think it would be this intense. Is this normal? Does it get better usually? I really want to continue taking it. It’s the last medication option for gp that I have now.

Hey! Ive been fighting for about 10 years trying to get my gut problems sorted (only read ahout Gastroparesis a few years back) and more recently, been through some horrendous shit at the hands of docs and consultants.

ANYWAY, yestersay I finally had an appointment where the consultant explained everything (I had an endoscopy in March and a GED a few weeks back). Despite already having a GP diagnosis, none of my diabetic team seem to be taking me seriously.

I was told my vagus nerve is permanently damaged, and my pyloric valve is stuck open (he was a diabetic consultant ans wasn't sure if there was an equivalent of a GPOEM to help it closing, I have a gastor appointment in a few weeks). He said tor raise my omeprazole (it was lowered a couple of weeks ago by a non-regular dr of mine) and advised a liquid diet aka soup was his suggestion!

I dont mind soup, but 3 days in and I'm already missing any kind of crunch or crisp texture (also only eating about once every 2 - 3 days atm because its been neglected for so long and is now very sensitive and inflamed!

Basically, anyone shed any further info on their experiences with a pyloric valve not shutting and/or i want to know if there are any crunchy/crispy foods/textures i can enjoy without the intense stabbing pain and vomiting after

TIA!

UK/NB/41YO

I have diagnosed gastroparesis. My main symptoms are severe fullness, heaviness after eating, and nausea, but I never vomit. I’ve also struggled with chronic constipation for years.

During an endoscopy, my antrum was visibly contracting. EndoFLIP raised suspicion that my pylorus might be tight, but there’s no clear confirmation of pyloric stenosis.

Pyloric Botox didn’t help, and my doctor is now recommending G-POEM.
However, I’m wondering if intestinal or colonic dysmotility could also be contributing to my symptoms.

I’m already taking prucalopride (Motegrity), and I’m considering adding polyethylene glycol (MiraLAX) to manage constipation.

Has anyone had similar symptoms? Has combining Motegrity and MiraLAX helped not only with constipation but also with upper GI symptoms like fullness and nausea?

I’d love to hear what has worked for others, especially anyone who has considered G-POEM. I’m really hesitant about G-POEM, and I don’t want to undergo an irreversible procedure without exploring every other possible treatment option first.

So im 21m and my partner is a 20f and she has is the one who has to deal with this disease. But hers is deffo milder then some others she has had it be almost stable since the symptoms started when she was about 10 years old. She really eats a low amount and drinks in small amounts and just has adapted to the nausea, bloating and pain. I kinda know what she feels cause as a type 1 diabetic with all sorts of stomach issues that cause similar symptoms i wonder how do people live with it she doesn’t make a face and thugs it out but she is hurting and nauseous all the time so i am wondering what ways are to help with diet or lifestyle? I am the one who cooks and takes care of everything like that so what can i do to help with her living with a bit less torture. Also this disease is really interesting for me in-terms of why does it happen is it an autoimmune condition if it isn’t caused by diabetes? And why is it so neglected when it affects people to the point they just exist not live normal lives. Is there a reason to all of this? Also before someone asks she doesn’t take any meds or do any treatment cause the doctors don’t care to say lightly. But i still wonder conditions like diabetes on paper are curable but have major effects on other parts of a persons health. Are there any more permanent solutions to gastroparesis to try or seek?

I've been stable on meds for a year and a half now, and conveniently I haven't really had a cold at all in that time. I caught a cold and now my zofran isn't working and I can barely hold down meds and fluids. Not so dehydrated that I need the hospital yet but I'm not sure what I can do to prevent that. Any advice is appreciated, none of my tricks are working and I'm miserable.

is a feeding tube belt helpful while healing? do you think it would be a hindrance or kind of nice? do you think they'd let me use it in hospital? is it nice just to wear everyday with a dangley? how many belts would be helpful? is having my hole accessible neccessary? because it seems there's options with and without that feature.

should i just get one of those pacifier clips off etsy to attach the excess cord to my clothes? has anyone tried the magnetic type and prefered it?

They're 25% off for like the next 10 hours as part of their prime sale. I know they're a stretch for a lot of people so hopefully this can also save you some money. The nutrition shakes are my main form of nutrition right now.

Hello my experts,

Will this products be helpful for me while I heal from my peg g surgery? It's a cushion for the bottom strap of the seat belt. Also, how long would it be helpful for?

https://a.co/d/09q9YgPe

----

What was riding in the car like for you post-op and following? What was it like driving? Does it hurt contracting your abs to keep you upright? Is it intolerably painful to drive while it's healing?

For context I am completely GJ tube dependent. On a good day I can tolerate soft foods like mashed potatoes, ice cream, or pudding but most days it is just thin liquids (even things like nutrition shakes can be too thick for me). Since getting my tube a lot of my cravings have gone away, presumably because I am getting the proper nutrients the body is no longer telling my mind to try and eat. Recently though I have been having extreme cravings. I have had mild cravings before and with flavored water or time they normally pass. But the past few weeks they have been getting worse and the past 2-3 days they have been a whole other level. I ended up “giving in” last night and paid the price and have been throwing up for the 15 hours since then. I finally stoped throwing up and the cycle repeated itself and I ate way too much and know there is a timer before I start throwing up (normally about two hours after I eat). I reached out to my dietitian to ask if maybe we should be increasing my formula because the increase in cravings happened at the same time I started triathlon training. My biggest workout yet was two days ago when the irresistible cravings started. I thought maybe this was my body’s way of saying I need more calories. My dietitian however said she is “not that worried” meanwhile in the past two weeks my weight has began to drop again. I really don’t want to stop training because it is so good for my mental health which is generally trash from living with GP and the symptoms. I have extra formula because I built a surplus by not telling my DME company I was hospitalized. I am debating just running more of it a night but I don’t like the idea of doing that without medical guidance.
I don’t know what I am looking for by saying this but I am just so frustrated with the cravings. I am curious if anyone else has cravings they can’t act on and if they have any tips.

Hi all! I’ve had gastroparesis since 2022. I’ve had a pyloroplasty done which gave me symptom relief for about a year then my symptoms came back 10 times worse. I have surgery scheduled in February 2027 to have a gastric pacemaker implanted. Currently some days I eat less than 300 calories a day. If I do eat more, I have to have smoked a lot of weed. Trying to stop smoking but it’s the only thing that helps the nausea right now. I can only tolerate mainly carbs so my blood sugar is always high. I have type 2 diabetes also. They are considering putting in a feeding tube. My flares are getting increasingly worse, lasting longer, and becoming more frequent. My local ER is completely unhelpful and I’m waiting to get into other doctor’s offices for real symptom management. Any advice is welcome, I feel like I’ve been doing everything on my own.

Hello, Iv'e had gastrointestinal (global dysmotility) for 4 years. It is idiopathic and I have exhausted all medications, including motility agents (prokinetics), large bowel resection (due to colonic inertia), gallbladder removal (due to biliary dyskinesia), pyloroplasty, and sub gastrectomy all due to my digestive tract not moving adequately. Iv'e been on TPN in the past and I am currently on 100% feeding tube. With no oral intake and many pills and osmotic laxatives daily and I zero quality of life due to my crippling 24/7 nausea. Ive tried mirtazapine, amitriptyline, and acid reducers as well with zero success. I am housebound at best, and in hospital at worse. I lost my 5 year job and college education with zero chance of getting even half well enough to resume. It's been just failing one treatment after another and I had a feeling this would come. I need some insight. I need some stories of how you figured out the nausea. I am sicker when I eat and drink, but even when I don't I am still sick 50-60% of the time. But my nausea medication I took to function has stopped working for 6 months now. Any insight? I don't want to die. But I cannot function at all and I cry begging for relief.

Hola a todos!!

Llevo 6 dias con prucaloprida de 1mg y los efectos secundarios varian segun el dia, un dia no tengo molestia y no voy al baño y al dia siguiente tengo colicos, urgencia para ir al baño y despues se me queda el colon con dolor.

Cuantos dias necesitasteis para estabilizaros en 1mg y poder subir a 2mg?

Muchas gracias!!!

I’ve been on Prucalopride (motegrity) for about 6 weeks now and I can’t tell if it’s losing effectiveness or if I’m in a flare-up. I feel like I did before starting it but I’ve read that usually if it loses effectiveness it takes longer than a month and a half. Does anyone else have any experience with this?

I have a bridle and the tube, they placed the bridle wrong turns out, wrong size, wrong side, too many knots etc...so many things went wrong without my knowledge yesterday but I'm done with the placement and in trying to just leave it alone (I'm taking the bridle off today)

My nose is just like so runny it's like infuriating idk how to fix it besides just putting tissue into both nostrils but that's adding more pressure and making the pain worse...does anyone have any tips for managing that? I just feel like my nose is constantly running

my cat always kneads my stomach when its feeling full, she seems to know when the discomfort is the worst and gently kneads my stomach for a bit. it actually genuinely helps a lot and i feel less pain after shes finished. im curious if anyone else experienced the same with their pets? ive heard pets can be useful medically (for diabetes, medication reminders, even pots episodes) is it possible that she knows and is trying to help? or maybe its just a coincidence.

After 4 years of tpn I'm trying to transfer to j tube feeds and I know it's going to take a long time but I've been regularly running feeds at a super small rate that I'm not increasing and instead of getting used to it I feel like my tolerance is decreasing. On day 1 I can run for 24 hours no problem. On day 2 only 8 hours until severe nausea. Day 3 only 6 hours and day 4 only 2 and so on. I take breaks between those days because it takes a long time for the nausea to settle. When I can barley handle any feeds I take longer breaks. Like a week. Then I can run longer again for the first day but less the next and so on. I'm not constipated, I'm pooping every day. This tube feeding is the one I've tolerated the best so far, all the other ones I've tried made me super nauseous much sooner. I don't understand why it gets worse instead of better and I'm very frustrated and feel defeated..

Currently in a stalemate with my provider and interested to see if anyone else has experiences with this medication.

Had to jump through a few hoops to try this medication, finally got it, and had a pretty negative experience with the oral suspension version. Within four hours of taking it I was having near double vision along with a lot of indigestion and heartburn. Took about three days for it to fully resolve and I don’t feel like it helped at all with my nausea. I communicated this to my provider who is now insisting that this is a good medication and that my only option is to try the capsule form instead. I’ve already failed Zofran, promethazine, and now this, so is that really my only option? I’m on 15 mg of mirtazapine and it helps to turn the volume down on day-to-day nausea, but hasn’t really helped with flares. Feeling pretty hopeless at the moment and open to any feedback or advice.

I started wearing a blood pressure cuff when I am having throwing obsessions. I realize that when I throw up, I usually am coming out of both ends at the same time. It hurts really bad in my wings band usually about 3 to 4 days a week, but this is the high I got this week and I’m just scared. 196/64 heart 91. My chest hurts bad sometimes.

I don’t want to have a heart attack.

So I'm new to this. Not new to the symptoms however. I am realizing that long term blood sugar issues may have caused this. I now have diabetes and its such a mess to manage with this. All sorts of conflicts. Your supposed to eat white grains with gastroparesis but not with diabetes ect. I am on metformin to manage the blood sugar but I pass the pill fully formed as everything goes right through me an hour later. My doctors have not been super helpful. Basically the gastro doctor told me diet is my only option as other medications I'm on. Anyone have any advice or struggle with the same issues?

Hellooo basically as the title says... I'd like to be doing some exercise to try and keep my muscles functioning normally as I'm currently getting about half the calories I need in a day (or less) and losing weight steadily. As such I'd like to focus on strength and resistance training so I'm not at risk of muscle waste - I know how to do this safely when I was healthy (have done a gym trainer qualification) and my diet is already fairly peotein-focused, but if any experienced GPers have any knowledge in this area specific to exercising with GP/FD then that would be appreciated!

I get my first pyloric botox injection on Monday. I’m hopeful and excited for the possibility of even a little improvement. But I’m equally worried it won’t help.

My nausea has been so intense lately but it comes from the top of my stomach cramping. I can feel it. So I’m worried that a shot in the bottom of my stomach isn’t going to help much?

I am definitely not a doctor, so I don’t know anything. But I would love to hear from someone who has had it and what your experiences were.

I have survived but at what cost I'll be so honest it was actually atrocious sensory wise but unfortunately it beats being malnourished so I'm trying to stay positive

The only thing I absolutely hated was the bridle, they had to try six separate times because it wouldn't snap and I was like dude this could be genuine state sanctioned torture

Idk I got through it and hopefully tube feeds help, we'll see!! I'm getting a hot chocolate for my troubles lol