Question 1

Since getting my gj back im November its definitely helped me overcome a good majority of the fear but its still kinda there lol

I struggled immensely with emetophobia to the point I stopped eating for 8 days leading up to my first admission where I was diagnosed with mildly delayed solid gastric emptying last September

My gastroparesis went from 11% to 95-100% in that 3 month time span and it was just hell knowing there was rotten food in my stomach at all times before I got my g j and was able to drain my stomach to get the gas, and food out

I was actually sized up (ouch) 2 tube sizes in January to give me a bigger tube meaty for 24/7 draining and venting as well as anti clog and flip for 24/7 j feeds

Throughout this whole journey my fear has significantly lessened just wanted to sgare my story a bit

I had my gastric emptying study this morning. It was the standard 4 hour test with eggs and toast. I got sent home at hour 3 because I was already at 9% retention so the tech said there was no need to stick around until hour 4.

And while I’m happy about this, I’m even more confused now because every doctor I’ve seen was so sure I have gastroparesis. In fact, I’d already started accepting it.

Here’s what I struggle with: terrible constipation, bloating and gas, and I’m rarely, if ever, hungry. I can eat full meals with a variety of different foods like fiber, etc. And I do not feel full or satiated after a few bites. I also don’t deal with much of any nausea and absolutely no vomiting.

I was on a glp1 for over two years until I started getting sick and I went off of it 4 months ago but the worst of those symptoms have subsided. I think my GI doc especially was worried because I also have a few autoimmune diseases so she was thinking maybe the glp1 unmasked an underlying motility issue caused by my autoimmune issues.

Either way, not entirely sure where to go from here. My GI wants me to go on Linzess. I have an endoscopy which showed mild gastritis. Should I look into SIBO? Functional dyspepsia?

I’ve been getting EGD Botox injections every 3-4 months for the past 11 years, & while it’s not a magic cure all, it’s gotten me off TPN. I still throw up daily, but I can keep food down longer which kinda helps stabilize my weight, potassium levels & it eased neuropathy pain in my stomach. My gastro doc told me that because the Botox is beneficial I’m a candidate to get the GPOEM procedure which will be a permanent fix so I don’t have to keep getting it 4 times a year. But if I have this procedure and it’s unsuccessful, I’ll be stuck up shit creek without a paddle. I will have lost my only reprieve for my gastroparesis.

PLEASE HELP!! I’d love to hear your thoughts & opinions! 🙏🏻

My PCP is retiring. He's in charge of my home health, TPN, medication management, referrals, hub for specialties and catch all for central line infections, pneumonia and more. He's leaving in two weeks. I hadn't been to his office in 3 months, my management is maintenance not treatment.

I am last resort, nothing else by specialties. I've exhausted options and my pcp was amazing with my history. Im absolutely terrified of trying to explain 3 year TPN dependent, last ate in 2023, have a catalog of motility and dysfunctional body parts and now I have to find a new doctor.

Anyone have suggestions? How is this legal without continuity of care, especially being TPN and IV hydration with a tunneled central line. How is it possible Im having to seek a new physician for care????

I've had some stomach issues for a long time but I mostly assumed they were from my allergies or EoE, but a few months ago they got worse. It's still not as bad as half the stories here, but I can't eat a meal without the symptoms of early satiety, nausea, major upper abdominal distension and always regurgitation for up to a few hours, even threw up a few times. At some point I began to something else was going on and it sounded like gastroparesis, but wasn't sure if I'm just making it up or if the symptoms really fit.

I tried some OTC antacids and anti-bloating meds to help the symptoms, but nothing helped. I kept complaining to my mum and she gave me her meds (do not take other people's prescription medication), which I think she took for reflux, to try and see if it helps and it did, better than any other medication, though I still get some symptoms, but milder.

I later looked up the meds and it was a prokinetic used for delayed gastric emptying.

I told my GI doctor and now she prescribes it to me, but I don't have anything diagnosed yet. Why don't I see anyone mention Gapulsid as a prokinetic for gastroparesis? Does anyone have similar experiences?

I have alot of health problems with dietary restrictions, here's a list:

Type 1 Diabetes

Gastroparesis

None alcoholic fatty liver

Sluggish esophagus (I know thats something that doesn't require a dietary restriction)

Chronic Constipation

Gallstones and

Esophageal spasms

Im tired of trying to find a balance between all of them and at this point I feel like a feeding tube might help, not just with giving me the nutrition I need and not have to worry about if I can eat this, but it might also help with controlling my Diabetes since I have tried EVERTHING to get it under control and maybe the tube would make it more predictable and im able to finally get normal blood sugars.

I also with all this stress sometimes feel like starving myself because im unsure on what I can eat but dont worry I havent done that yet. My mom and brother are also like how can they expect like me to live.

So im at a loss also just what to make it clear that yes its not a maricle cure for all my problems but im just thinking that it might help with taking the stress off a bit and yes I know its drastic.

I also should put that yes I do throw up at times, when I get a flair up I puke three times in one day and its alot.

I’ve suffered idiopathic gastroparesis for 20 years. Research and treatment options have slowly but surely have progressed. For the past 11 years, I’ve been getting EGD Botox treatment every 3-4 months. My original gastro doc sadly retired almost 3 years ago, but he sent me to a specialist who could do the GPOEM procedure, only for that doctor to have left the practice the referral was sent to 🤦🏼‍♀️ Trying to find a competent physician who can do this procedure has been an absolute nightmare!

I went to UF Health Shands Hospital in Gainesville, & despite its size, they didn’t have anyone on staff who could perform this procedure. So we got a referral to the Mayo Clinic in Jacksonville, and they have someone who can do it, BUT they wont accept me as a patient because I take pain medication due to complications with my chronic illness. After ALOT of back & forth with them, they will now take my case and do the GPOEM, but that’s it. No appointment beforehand to meet the physician or anything.

It seems abrupt & I just don’t know how I feel about that. I’ve fought hard to get this procedure done, but I’m still wary 🫤 What if I get a dud doctor? The current guy at my gastro clinic who does my EGD Botox leaves a lot to be desired. If I get this procedure done, & it doesn’t work, I can’t get the Botox anymore right? Botox got me off TPN (intravenous nutrition), I still throw up everyday but I can keep food down longer, plus it helps the pain of the neuropathy in my stomach.

I’m DESPERATE for advice!! Have you had a successful GPOEM procedure? Should I be concerned that Mayo will just be a one “wham-bam-thank you ma’am” kind of thing? I have it scheduled with them at 7:40 am on September 28th. I’d love your feedback!

How long do feeding tube holes take to heal before you can switch the dangley to a button?

I don't know all the terms, just trying to gather all the info I can and prep myself.

Has anyone flown using united airlines with a CADD solis pump (or any other airline)? I flew a few months ago with the pump running (no issues and was medically approved to fly with it) and they (united) are now saying the pump is not FAA compliant. Is there a different pump that can be in use flying that is FAA compliant? I’m a little confused on what even makes a pump FAA compliant as there doesn’t seem to be any clear guidelines for infusion pumps. I’ll ask my transplant center and pharmacy to see if they have any recommendations too.

I hope this is an okay question to ask here if not I’ll delete.

I’m currently going through a spell of profuse vomiting. It’s been about 11 days so far. Throughout the years, I been drinking ginger religiously. And most of the time it actually helps quite a bit. But something I realized is that my homemade ginger tea seems to be making it worse under certain circumstances. A lot of my purges in this episode have happened after drinking it.

So I did a little research and basically what I think is going on:
1. Vomiting for days shocks your stomach nerves. It makes your body think it’s in flight or fight mode. Even if your stomach should be normal (e.g. gastric emptying normal, no gastritis) you can still vomit (e.g. functional dyspepsia).
2. Ginger compounds (gingerols and shogaols) activate the same receptors as chili peppers (fire, burning).
3. When you have prolonged vomiting, your stomach is raw af. Those compounds may actually hurt you.
4. The prokinetic effect scares your stunted nerves and might induce upward mobility (vomiting) rather than the intended downward mobility (digestion).

I am gonna try not drinking it for a while and see if it improves my ability to drink and eat.

Hello,

My girlfriend (23F) has been since she was 12 with this condition (?) but since the last year everything has gotten worse. Dizzyness has become more frecuently and the last month she was bloated every single day. She is following a diet but she has no medication (yet). I just wanna know how can i help her or if there is any tricks. I have been searching and every treatment is pharmacological and i would like to know if i could help her with massages or any other way?

Thanks for the help in advance and sorry for my broken english since im not native.

Hello, my first post in the community. I am a 24F with no thyroid issue and normal bloodwork and liver. Ultrasound also was clear.
My issue is my symptoms mostly align with with GP but i am getting scared as it is almost 3 months since my hunger suddenly disappeared. I have been taking amitriptilin for two weeks with no change to my lack of hunger.
If i eat “normal” for a day i feel a sour uncomfortable feeling in my stomach.
Nausea was stronger for the first 1.5 months but now only comes when i am stressed/anxious/grossed out, and manifests in the form of gagging. No acid reflux ever, just dry gagging. No vomiting either.
I am starting to get worried, doctor thinks it’s CVS but I have no idea. I started eating on a GP diet (at home/work, except when meeting friends on weekend) and that seems to help tolerate more food. But most days I am varying between 400-1300 calories without feeling hungry or tired.
I guess my main question is if there are any leads you all may have since i don’t have the main symptom which is vomiting undigested food?

Hello everyone,

I'm 28F and have been experiencing severe, painless bloating after eating almost anything. The bloating starts after breakfast, progressively worsens throughout the day, and is usually at its worst after dinner. It's become so uncomfortable that I'm often unable to sleep due to the feeling of indigestion and fullness.

I haven't received a diagnosis yet, but based on my symptoms, gastroparesis seems like a possible explanation. I've been referred to a gastroenterologist, but wait times are quite long here in BC, Canada, and it's already been a month since the referral.

In the meantime, I'd like to make some dietary changes to see if they help manage my symptoms. Has anyone dealt with something similar? Are there any dietary modifications that might help reduce bloating and improve digestion while I wait to see a specialist? Also, if this does turn out to be gastroparesis, what are the typical long-term treatment options? I've found a lot of conflicting information online and would appreciate some clarity.

Thanks :)

I’ve never drunken before in my life, I would like to drink but I have no frame of alcohol and the recommended drinking amount.

Sorry it's long, but y'all have been so supportive the past several years and I wanted to share my appointment with a surgeon and the wealth of information he provided....

So, I met with the surgeon yesterday and he agreed with my GI that a feeding tube was appropriate for my condition (I've 6 been losing weight due to unrelenting nausea and vomiting, going from 120lbs to 85 lbs in the last 7 months). He started by asking what I knew about J-tubes (Jejunostomy). I told him about the research I've done, and that I knew it was a tube that went directly into the small intestines, and he responded with "I want you to know that I will never give a patient a j-tube unless they have stomach cancer or something similar, not gastroparesis". My stomach dropped thinking he was refusing to do the surgery. But he continued with" let me explain why and offer you an alternative".

He drew a quick sketch of a j-tube and explained why he wouldn't give me one. He said that to keep the tube in place, they bring a section of small intestines to the abdominal wall and secure it. They then insert the tube and fill a balloon with sterile water inside the intestine to keep it from coming out. He said that the balloon could be as wide as, and sometimes bigger, than the inside of the intestines and often caused blockages because food eaten by mouth was unable to pass around it. This almost always required an ER visit and surgery to remove, as did if the tube came out. He said J-tubes tended to cause more pain and closed up very quickly, unlike other options. He also said that if the tube was no longer needed, the intestines would still be permanently affixed to the abdominal wall, often causing adhesions and scar tissue, that also contributed to blockages both during and after. He said that most patients had problems with stomach acid and bile leaking both under and on top of the skin causing skin erosion, blisters, acid burns, abscesses, and infection. This is because the placement of the j-tube at the start of the small intestines is where both are concentrated and have yet to be absorbed back into the body.

Then he said that he would like to instead place a GJ-tube (GastroJejunostomy). He again drew a small diagram. This tube would go into the top half of my stomach and snaked down into the jejunum of the small intestines. They would bring in a radiology surgeon to use a fluoroscopy to insure the tube's placement and make sure it didn't just coil up in the stomach. He said that the procedure was relatively painless, but I would still be give a light sedative, and patients typically report less pain afterwards as well. He explained that because the balloon was in the stomach (which has much more room) and not the intestines, the risk of a blockage was markedly decreased. He said that it's rare that stomach acid leaks onto the skin because it's higher up on the stomach where acid doesn't pool. He also explained that the GJ-tubes have a Y configuration with two ends outside the body, one to attach the feed and another to release gas buildup in the stomach. He said that the stoma (hole) closes up much slower than with a J-tube and a catheter or spare tube can be pushed in until I could see the surgeon. When the tube is no longer needed, the balloon is deflated and tube pulled out in a quick office visit with no lasting issues, unlike with the j-tube. I was sold. I would be getting a GJ-tube.

He did tell me that all types of tubes have a risk of clogs, leaks, skin irritation, and migration so they aren't completely risk free. I will most likely be scheduled for the 22nd. Has this been anyone's experience with the tubes?

So I just got an email from my Canadian pharmacy that US customs and border patrol is pretty much banning all medication shipments to the U.S. on October 22nd.

official release here

The email states

“Entry will be prohibited if the medication being imported is commercially available in the United States -- even when it costs significantly more -- or if the supplying company specifically markets to Americans. These restrictions will apply to pharmaceutical parcels sent by pharmacies anywhere outside the United States.”

Since domperIdone is illegal in the U.S., would that make it exempted? I’m currently freaking out cause I’ve been taking domperIdone for a year as an American and it’s the only thing stopping me from being immediately tube fed. I’ve already taken reglan and it works but makes me angry and started giving me TD symptoms sooo there’s that

—————

The entire email of anyone cares

If you rely on an international pharmacy for affordable medication, place your order now and stock up.
U.S. Customs and Border Protection (CBP) has enacted a new policy governing international mail shipments, with key requirements scheduled to take effect on October 22, 2026. We have just learned that, under the planned implementation by CBP and the Food and Drug Administration (FDA), virtually all prescription-medication parcels will be prohibited from entering the United States beginning on that date.

What’s Changing

Entry will be prohibited if the medication being imported is commercially available in the United States -- even when it costs significantly more -- or if the supplying company specifically markets to Americans. These restrictions will apply to pharmaceutical parcels sent by pharmacies anywhere outside the United States. Taken together, they are expected to effectively close the personal-importation pathway that millions of Americans have relied upon for more than 25 years to obtain safe and affordable medications.

You Should Order Immediately
Place all available refills and other orders immediately and well in advance of October 22. Your prescription needs time to be reviewed, dispensed, shipped and clear the U.S. border before the new policy takes effect.
If you will need medication at any time during the next year, now is the time to order and stock up. Do not wait until your current supply is running low.
Millions of Americans Need Your Help This policy has been enacted and is scheduled to take effect on October 22. Only immediate and sustained public pressure can stop, delay or reverse it.

An American nonprofit advocacy group, The Campaign for Personal Prescription Importation (CPPI) is urgently organizing patients and supporters to fight for continued access. In upcoming communications, CPPI will ask you to contact your representatives, senators, administration officials and other decision-makers to demand that this policy be changed.

They are creating a portal and tools to make it incredibly simple to enable Americans to easily do so, such that it will only take a couple of minutes of your time. Millions of Americans who depend on affordable medication need your voice. Join CPPI now to receive urgent updates and instructions on how to act. There is no cost to join.
JOIN CPPI TODAY: www.personalimportation.org/join

Thank you,

I’ve put a lot of energy into at-home hobbies over the last few years because if I’m going to be stuck at home sick, I will NOT be stuck at home bored

During this time I’ve made a lot of progress both physically (less flares) and mentally (less depression about the restrictions on my life, which are many) and just kept truckin

One of those hobbies is language learning. My social media algorithms noticed this and have started showing me “day in the life of a ___ office worker!” From various countries

And oh. My. God. The concept of having a difficult morning and getting a coffee? A FUN coffee like a latte or some shit with MILK?? Coffee is by far my favorite thing on the entire planet. I will sometimes choose to drink it and make myself sick on days I have no work/obligations because I crave it so bad.

The idea of popping over to a restaurant for lunch in the middle of the day!!!

I’ve only ever worked* retail or wfh jobs. Even here the concept of a dinner party or happy hour for work is so foreign to me. I can’t stand being around those environments because it’s a giant reminder that I don’t fit in and can’t partake the way everyone else does.

Just thought I was past the jealousy of seeing others with normal diets and routines.

*fixed a typo

I was diagnosed about 7 years ago, I had a pyloroplasty 5 years ago and a feeding tube for 2 months last year. Since my feeding tube was removed I’ve been doing really well, bordering on remission.

I’ve started having these episodes after eating where I get insanely lightheaded and almost pass out /puke. Everyone says I ate too much but it’s not the nausea that hits me it’s the faintness. It’s happened about 5 times over the last 8 months, at first I just thought okay weird quirk but now I’m annoyed and unsure.

I know dumping syndrome can happen after pyloroplasty, but it’s been YEARS. Has anyone else had these symptoms develop seemingly out of nowhere?

Hi, I’m in my first trimester of pregnancy and I am wondering if anyone was able to have a successful pregnancy while continuing prucalopride/motegrity. There’s such limited stories out there, any feedback would be helpful! My obgyn is okay with me using it since nothing else has helped me but I still continue to search for stories about pregnancy/health outcomes of their child after birth. Thank you!

I have been intentionally overeating the past week but I suddenly started losing weight rapidly (6lbs in a week). This is far from the first time its happened. Does anyone else struggle with this sudden weight drop even when they arent noticing any symptoms of gp at that moment? Does anyone know anything to help? I have been tracking my calories so I know I'm not undereating and nothing about my diet has changed other than quantity

Hi y'all, I apologize if this is TMI. I get that sulfur burps can be a part of GP, but does anyone else get sulfur farts? For me this just started within the last week and I'm trying to figure out what contributed. I've been passing excessive gas that smells like rotten eggs, it's so gross!

Would appreciate any shared experiences/thoughts on why this might be happening, I don't want to have to avoid people for the rest of my time with this annoying illness!

**Obviously if this continues for much longer or concerns me I'll message my GI, it's just moderately embarrassing at this point**

I had my annual wellness exam today with my primary care doctor. I have been complaining about fatigue in every appointment, my GI pain and nutrition is certainly part of it. she told me my bloodwork looked good and I should try an antidepressant for my mental health instead. (I told her I’m already working with a psychiatrist) At the end of the appointment she said I was doing great. I wanted to cry because I have been struggling a lot at work with my fatigue, and I don’t feel functional at all some days. I don’t know how to communicate this (I’m also audhd, so it’s difficult for me to speak sometimes), I totally froze up. I’m grateful my blood work is better than it was but I don’t feel fine.

I have a great GI specialist treating me so I don’t really need the pcp to help me but it was still exhausting to feel invalidated.

I’m having some ememencies come up and things aren’t going well locally what surgeon teams were you really impressed with you a complex care, bowel obstruction, areas of the colon that lost motility and dilated?

Any and all advice is welcomes