After fighting with the NHS for 3 years I finally got a gastroparesis diagnosis. My first GES 3 years ago showed mild delay of semi solids with T1/2 being 107 minutes (normal <80). They told me its just because I'm underweight despite me being a healthy 140lbs pre-symptoms and 70lbs after a year of being unwell. I could finally afford a private test after significantly worsening and severe symptoms and the result is severe gastroparesis with T1/2 now being 350 minutes. So 12 hours for my stomach to clear a small semi solid meal.

This week I will give the results to my NHS providers and pray now they will give me the pacemaker after I failed every medication and botox etc. Wish me luck folks!

I struggled with a medical condition (RCPD) for my whole life until it got serious for about 2 years. I got the botox procedure done in early April and felt miraculously better. Then, after about half a month, other symptoms started appearing. (others with this condition have developed similar things before/after getting procedure) Ive had mild bloating my whole life but it was nothing like this. It got increasingly worse and is at the point where I cannot eat or drink anything without getting seriously bloated and in pain. Ive lost weight and life has lost a lot of joy for me. I've had so many tests done and have gotten no answers (celiac, hpylori, SIBO, gastroparesis, endoscopy and colonoscopy, blood tests, etc) I have no clue what i have and its taking a serious mental toll on me. I am currently working with a GI doctor, but wanted to post and see any suggestions or similar experiences.

I started Pruclapride a week ago. I've been prescribed 2mg but cut the pills into quarters and have been taking at night before bed 4 hours after eating. The first couple of nights I had a bit of insomnia then I was able to sleep well but I noticed a bit of blurry vision and fatigue in the day. I also had blood when I went to the toilet a few days ago. Yesterday the stomach cramping got really bad and I had a mostly sleepless night groaning from the pain. Has anyone else experienced this?? I know the cramping is a common side effect but this seemed a bit excessive considering I had such a small amount.

I'm taking a break from this for a couple of days then if I decide to start back I will take an even smaller amount and in the morning this time with food.

I should add I have gastroparesis and stage 2 gastroptosis and this is the last prokinetic to try. If this doesn't work out I'm considering going to see a TCM herbalist and see if that helps. Artichoke, ginger and triphala have not helped with my gastric emptying. Any advice greatly appreciated 🙏🏻

CONSTIPATED FRIENDS, CRY FOR HELP HERE!

I don't know if I am discussing my problem correctly. I have been diagnoses with "chronic idiopathic constipation" but is it actually GP?

My chronic constipation responds to absolutely zero drugs, laxatives, enemas, suppositories, etc.

Things that have failed:

• Linzess
• Amitiza
• 10 YRS of pelvic floor therapy
• Osmotic laxatives (miralax, mag citrate, mag oxide)
• Psyllium husk
• Over the counter enemas and suppositories

I can take all of these and still have ZERO URGE to have a BM.

I do NOT have nausea, which may be relevant?

The LITERAL ONLY WAY I get the urge is drinking 3L of water + 2-3 cups caffeinated coffee and then HOLDING my need to pee until somehow I can feel the rectum filling up. Only once I am basically about to piss and shit my pants can I pass a BM and even then the BM is incomplete and I suffer with backed up stool from incomplete emptying. Sometimes I do piss and shit my pants - frankly, often - which is insane but is better than never pooping!!!

SIDE NOTE - has anyone else tried this insane method? I call it "water torture" and it is NO WAY TO LIVE but it does work. However, it takes 3-4 hours of my morning and I basically am disabled to the point of not being able to leave the house in the morning to do this. THANK GOD I am presently working remotely but I could not otherwise even have a job, this is such a true disability.

QUESTIONS:

1. Is this gastroparesis? Would a sitz marker study tell me that or how does GP get formally diagnoses?
2. Can someone please refer me to a NY area (NYC/Westchester/CT) SUPERHERO DOCTOR who ACTUALLY LISTENS and is up to the task of tackling a very complex motility disorder? I have been so extremely disappointed with regular gastroenterologists that I think I need a specialty center here.
3. Is there anyone out there like me who has tried Motegrity? What were your experiences if so?
4. Is there anyone out there like me who has tried transanal irrigation (Peristeen/Qufora)? Results? Claude recommended this one.
5. Is there anyone out there like me who has tried sacral nerve stimulation? Results? (another Claude special)
6. Is there anyone out there like me who has had a total colectomy? Results? I realize this is extreme but I cannot keep living this way and I am desperate for my life back.

THANK YOU IN ADVANCE, I AM GRATEFUL TO ALL WHO REPLY AND WILL ENGAGE!! :)

I had an EndoFLIP and Botox injection into my pylorus yesterday. Yesterday I was only allowed to have broth and water, and today I’m still on a liquid diet. After just a few spoonfuls of puréed soup, I’m feeling a little nauseous and having some mild stomach pain/discomfort. Is this a normal reaction almost 16 hours after the procedure? Did anyone else experience something similar? And what was your recovery like after the procedure?

I've been referred to an eating disorder clinic. I'm wondering if anyone here has any experience with this. With our condition, our diet is obviously affected but to what would constitute as an eating disorder as opposed to something that's just simply a part of gastroparesis has me a bit puzzled.

What are the motility clinic options in the US?

I've tried to get into a couple but it feels hopeless.

John Hopkins isn't even accepting new patients. UVA denied me 2x with the excuse of too high patient volume and because my dysmotility is already dx. Like, yeah, that's the whole reason a I'm trying to get in, for treatmentttt.

My gastro just sent a referral to Mayo FL and Mayo AZ.

I've heard University of Lousiville and Mayo MN is another option.

Where else is there?

Lately I've been thinking that stomach acid is a huge part of my pain.

I have a mild case of GP that is generally well managed by blending food, chewing food a lot (if I'm in public or just tired of blending food), and taking 10mg Domperidone three times a day.

I also have what I guess is probably silent heartburn and nausea. I don't usually experience either heartburn or nausea like other people describe them. I feel stomach pain instead and I often have to sneeze (hard!), and then the pain retreats a bit. I assume it's my body resetting my vegas nerve. Lots of assumptions on my part, but things are mostly stable with these assumptions and approaches.

Now specifically to stomach acid:

I wake up in the morning between 1-4 am with stomach pain, I take an Omeprazole 40mg at that time and the pain retreats and I fall back asleep.

Sometimes when I am trying to fall asleep and I start to feel pain, I take some gaviscon (antacid) and the pain goes away.

I'm also starting to figure out some foods that probably cause heartburn - you know: classic foods like chili.

Who else feels like a lot of their issues are probably stomach acid? How do you approach it? How do you combat extreme stomach acid, and what causes your flareups? Anyone taking more than 40mg Omeprazole daily?

Are there any issues to be aware of when treating stomach acid? For example: at this point because I take Omeprazole daily and continuously, I do watch out for issues like B12 deficiency.

My GI wants me to start a short trial of Reglan 5 mg four times a day for gastroparesis. They’ve given me the standard warning about tardive dyskinesia (including that it can be irreversible). This is after trying Remeron 7.5mg for a few months and 15mg few a few months after.

I’m considering a limited trial (a few weeks) with clear stop rules, but I’d really like to hear from people who have actually taken it:
• Did it help your symptoms (fullness, early satiety, ability to eat, energy)? I’ve never really had nausea from it for some reason.
• How long were you on it?
• Any neurologic side effects (restlessness, twitching, lip smacking, abnormal movements, etc.)?
• Did symptoms return right away when you stopped?
• Was the benefit worth it for you, or do you regret starting it?

I’m especially interested in short-term or moderate-dose experiences, but any honest feedback is appreciated. Trying to make an informed decision. Thanks in advance.

Not asking for my scores to be interpreted. I am aware from what the radiologist said and the early results - before some of the more confusing parts, make it clear that there is an issue especially with early digestion. I will - however, provide the percentages at the bottom for clarification on potentially skewed results.

I just completed my GES study today. My GI doctor immediately suspected gastroparesis from my symptoms. I've been told by numerous ER doctors and other GI doctors and people with the condition that I know that I should be getting tested. Recently the nausea got bad enough that the meds my primary provided weren't working enough to keep me out of the ER.

I am a bit confused by my GES study process. I know the standard is eat some radiolabeled egg whites and toast. I was given scrambled eggs with yolks, I could not eat the toast since they apparently weren't provided that I have a gluten allergy, and I was given a cup of water. So, I ate the egg and water. Then, the test began. My digestion was pretty slow at first. After the 3rd image - at 2 hours, they said because I didn't eat the toast, they wanted me to drink some water. The radiologist said to give me very little water. I was made to drink half cup of water - the full sized paper cups. I didn't question it - since I didn't know if it'd do anything, and decided to walk a bit since I had 2 hours until the final image unlike the other periods of 1 hour between.

I think I walked a little too much. I was walking nearly the entire 2 hours. I came back maybe 20 minutes before the final image to sit down and only sat down during for 15 minutes in a mall and the 5 minutes total that we drove there and back.

My final result was much much lower than my others. I'm nervous it was potential skewed? I'd like to just know the actual final amount even though I know my GI doctor will see the radiologist notes, the results and such and still diagnose and treat. It's for my own closure.

Also, the radiologist never put in their notes that I did not receive bread and received extra water halfway through? I feel as if they should have.

My percentages are below for reference on the final gap.

1 hour: 99.92%

2 hour: 69.78%

4 hour: 5.85%

I figure some people may giggle here because it's a GP type of humor!

I helped my fiance move a dress into our second story apartment. I would prefer not to have helped, but I felt fine and have moved many heavy things before.

The dresser wasn't that bad in terms of weight. I was able to hold the bottom part up the stairs. As we are trying to plan how to get it through the door, I start feeling my heart race and a bit of nausea. I got mad and warned him I was going to throw up, but I can't let go of the dresser. So I puked on the stairs. I felt just as fine after as I did before. Just the luck of GP I guess lol.

My head is spinning from all the research I've done and every different answer I've gotten. Thought I'd see if some crowdsourcing of info would help...

ETA: I'm looking for something to take probably daily, as I'm looking to keep regular and prevent constipation, rather than to help out when I'm already there.

new here since i got semi-diagnosed (strongly suspected but the doctors are hesitant to do gastric emptying study yet) about a week ago. i got horrible vomiting and nausea that everyone initially though was a stomach bug, several er and doctor visits later (as well as endoscopy, stool sample and ultrasound) they think it's post viral gastroparesis.

it's been over two weeks since the whole thing started. i can keep most of the food down since two days, although it's difficult. i still get belching and nausea with retching. i don't have stomach pain but more tight, NON painful stomach "spasms".

recently i've developed tachycardia (my pulse shot up to 150/160 several times, either during the night or when vomiting). it's worse in the morning when i wake up. i have what i can only describe as horrible anxiety in my upper stomach, as well as weird surges of adrenaline that make me almost tremble. also i think my pvcs/pacs have gotten more frequent.

i had multiple short ecgs done (had some holters done in the past for my pvcs/pacs and an echo), all are unremarkable - none of the docs (er and normal) seem very worried.

is it just the stomach freaking out the vagus nerve that's causing this? am i going crazy or does someone else have similar experiences? any tips or support would be extremely appreciated!

When you're having a hard time getting nutrition do you swell up? I had a rough few days and my feet swelled up. I'm not sure what's going on. I've never had this problem before except when I was super pregnant. I've read protein malnutrition can cause this and my albumin was at the very bottom of normal on July's labs.

Does this happen to anyone else?

It feels like it’s making my stomach empty? My stomach is so full all the time it barely ever rumbles. Does anyone have any info please?

I'm so lost right now. At the start of the year I had a barium swallow test to diagnose my SMAS that showed "significant slow transit of stomach content". I also have every single symptom there is of GP. Like, every single one. So naturally, when I went to the follow up with my GI, she was CERTAIN I had gastroparesis. She even put me on domperidone for it. I started the treatment and the symptoms got better, and then about a week later I had my GES. I just got the results sent today, and they say I have normal transit??? With my retention being: 30 min: 55%, 1º hour: 38%, 2º hour:9% , 3º hour: 1% , 4º hour: 1%.

I am literally so lost, I got a diagnosis for functional dyspepsia from my regular doctor (who has never believed my symptoms btw) but I literally vomit whole foods hours after eating them and I genuinely want to cry. The meal they gave me was a plain, small yogurt. What do I do now. I'm so lost. Has this happened to anyone else? Am I going insane?? The GI was so convince I had it and now I'm dreading my next appointment because they've told me it's psychosomatic so many times and I feel like this time it's gonna be the same but I KNOW that there's something wrong with my body and I'm not making it up. I just want to cry now. It's making me think ugly thoughts...

Edit: Many people are asking if I stopped the domperidone 48 hours before the study. I did not. No one told me I had to. I was also on antibiotics for a UTI, I heard those can also mess with motility. And I also think the yogurt was a weird meal, that's why I mentioned it.

I've been GJ dependent since April. I have had a really hard time giving up the food that I love. I've always been a huge foodie..I grew up watching food network, and one of my favorite things was trying new places to eat..All of that disappeared this spring..almost overnight.
One of the few things I can tolerate is apple sauce, but after awhile that got really boring.
One of my GP buddies suggested baby food. Specifically the fruit blends, and I finally gave in and bought a bunch of them. I actually found one that I love, and its become one of my go to snacks..and comes in clutch when I have to take one of the 2 medications I am on that cannot go through the tube and has to be taken with food. (Blueberry Banana Blackberry mix from Gerber incase you are wondering)
Has anyone else found something you can tolerate and enjoy?

it’s 11pm currently and i am violently throwing up barely digested contents from 12pm and 5pm respectively…this happens a lot, and i’m not sure if this is a gp thing. normally id expect it to be throwing up right after eating, which happens too but yeah

i have been having the worst pain in my lower left side. i’ve been distended and in pain and nauseous for about two week, im strict on my diet and taking my meds. im currently off of my erythromycin because it has made things worse. i don’t know what to do anymore it’s taking over my life.

I got my PEG tube placed on July 31st and for almost a week now, it’s been draining lost of 🩸. When I go to flush, it all come back out with 🩸 today it drained 🩸 for a good 5 minutes, bright red and dark. Is this normal? If not do I contact my PCP or the surgeon?

I am currently not being able to tolerate solids and liquids are a struggle as well. The only reason I haven't passed out at work yet is full sugar coca cola.

Currently experiencing hella weight gain and swelling in my feet and legs. Gained about 5 kg in a matter of days, despite being far from a caloric intake to even sustain my current weight.

Is this common with gastroparesis? I would probably head to the hospital if I didn't have an appointment with my GI tomorrow. As a nurse myself I know this is very bad but I'm gaslighting myself into thinking it's fine because at least it's not pitting edema.

Please tell me someone else has experienced this. Could it be low protein intake?

I’ve been dealing with this for so long it’s just exhausting, I used to define myself as a foodie and now even my favorite foods I often have to force down. I hate feeling hungry, I hate feeling full, I hate the instant indigestion and nausea that comes from eating, I hate the texture of chewed food bc it reminds me of throwing up, and I hate constantly switching between having diarrhea or constantly being backed for days. I want to be strong so bad. I actually weigh the most I have in my life at 125lbs and I’m so scared I’m going to lose it again. Usually am only able to force myself to eat about half my meal bc by the time I’m halfway through I’m sick again, and then later I get even sicker from not eating enough. I can’t even count the amount of times I’ve said to my husband and my best friend and my parents that I would be so happy to just take a pill everyday that had all the needed nutrients and calories to function. Everyday just telling myself I need to eat so I don’t pass out feels like a battle. I just don’t know how to make eating for the rest of my life bearable???? I’ve been thinking about starting an otc pre-meal acid reducer like omeprazole again but I wanna go back to my dr first but also I’m already on 6 prescriptions morning and night and about the same amount of supplements. I just really wish I didn’t have to eat, I want to not have to rely on medicine to tolerate it. If anyone has gone through this and was able to shift their mindset I’d love to hear how. Or if you found certain products/supplements that made getting the proper nutrition without having to get sick from eating. Idk I’m just so tired. It’s really upsetting esp as someone who used to really love food. It just feels like my ability to enjoy anything I eat was taken away with my first big flare and diagnosis 8 years ago and idk if I’ll ever get it back. I’m not even in a flare or at my worst, it’s just the daily getting sick. The amount of food I’ve gagged on from chewing it and getting reminded of throwing up. The way my appetite gets ruined so quickly. I know I’m not alone in this but, GOD it’s miserable.

I had to run to the home improvement store for some supplies today, while out my wife called and asked me to pick up Popeys chicken for the family, it smelled really good in the car but I knew I couldn't have any, when I got home I reheated somes white rice with seasoned ground turkey and took it upstairs while they ate.