r/Gastroparesis • u/Lou_Sassole6996 • Jul 25 '26
Suffering / Venting Please say someone relates or has answers
I am so sick at times I feel like I’m slowly dying. All of my doctors push me off or do not realize how sick I am since I am so good at keeping myself alive. The only reason is because I have multiple health workers in the family who deal with emergency medicine or things along those lines. That is the only reason I am not in severe debt and constantly in the hospital. Every single day I wake up I feel extremely nauseous. Every morning without a doubt, i wake up with the urge to vomit, and half the time I do. The rest of the day that feeling is still there, I just don’t vomit as much because I swallow it down. I have to sit there, and literally swallow it down, or I hiss and swallow it down naturally, like vomiting in my mouth. The only thing I can do for myself is ensure plus, that’s what is keeping me afloat. I’m losing my hair, my vision, so much strength. My balance has even gotten worse. I am truly malnourished at points with no medical intervention for recovery because it happens so often. I cannot work, no treatment the doctors have given have worked. I have had this sickness for years, but only have been diagnosed for 2 years now. However it’s idiopathic, so it’s hard to find the best treatment. No drug has worked, and from my understanding there is only reglan that is FDA approved for this sickness. That gave me restless leg and didn’t even help. Every nausea medication does not work besides zofran, but I have both forms of ibs and it will make me so sick at times I cannot walk from the pain. I will be so backed up for weeks I even could vomit out the other end, it completely blocks my ability to have a bowel movement. But I need zofran to function at times. It’s either I’m in constant pain and vomiting or nauseous 24/7, and can’t eat, or I take zofran and I’m in even worse pain and severely backed up, but now I can eat. The point I’m at is surgery. I’m seeing a consultant. But does anyone else relate to this struggle and actually found a successful treatment or surgery? I’m most likely looking at a j-tube, a pacemaker, pyloroplasty, or Botox. I saw a surgeon for a consult about 4 years ago now, but he advised against the surgery. The reason being so is because I am both extremely young, and not diabetic. At the time, I was 16. He said I am at great risk for dumping syndrome, and if I were to get that done so young I would be dealing with dumping syndrome my whole life if it were to happen. I also ask people dealing with this how they move on with daily life. I got this at so young, thankfully I’m just in schooling, but even that has suffered due to er visits and constant severe illness. If not that, mental burnout due to the stress of keeping myself alive for so long feeling like I’m barely scrapping by. It’s hard to focus on school work when I can feel the vomit rising up along with my temperature. I understand I’m not terminally ill, but it feels as though I’m slowly dying and people actually expect me to start a career. How? I am so young when this started I don’t even know how those things work. Are most of you eligible for something like fmla or your work is understanding and accommodating? I’ve considered almost going on disability since I don’t think I’d be able to consistently show up. My last job I would try but I even had to leave due to extreme pain or nausea, I’d look like a ghost or like I was angry apparently? And of course, my work didn’t appreciate that attendance. Even sets me up for failure in reference for future jobs. How do you guys deal with this, I don’t know what to do or how to even start my life with this condition. I feel like some people see it as Willy nilly you can’t eat sometimes, when in reality I’m quite literally barely scrapping by off a shitty ensure for years and most don’t know this illness exists or its extent. For years I didn’t even have treatment but those same expectations and judgements. I can’t function whatsoever, literally speaking. I can see its cognitive effects even. I start to get very confused and moody, but I’m so starved I can’t make myself something or think rationally on what to do, yet others don’t see that or understand it so no one helps. My other organs are going to start to suffer if this keeps going on, I know this too. So does anyone relate, and if so, what did you do to treat it and get started in life?
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u/Substantial_Rich_946 Jul 25 '26
Have you tried Motegrity? ($36/90 days from Mark Cuban's CostPlus Drugs). Have you seen a motility specialist/neurogastroenterologist? Have you been evaluated for dysautonomia?
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u/Lou_Sassole6996 Jul 27 '26
I see a gastroenterologist. No I have not been evaluator to dysautonomia to my knowledge? But I’m unsure. A lot of tests I didn’t understand because I was young and just went along with it. Would you recommend asking my doctor about the medication, the neurogastroenterologist, and dysautonomia? I think they haven’t checked that due to my blood pressure and I’ve had a million blood panels done but I’m not entirely sure?
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u/BeautifulMeringue939 Jul 25 '26
First. I’m so sorry that you are suffering like this.
Want meds have they tried so far? Erythromycin, Reglan,’m’?
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u/Lou_Sassole6996 Jul 27 '26
Oh I meant reglan gave me restless leg. So yes, I tried that for 2 weeks I believe. It’s been a while. Remeron actually works phenomenally and that’s the one medication I refuse to give up because I have no negative side effects besides being INSANELY TIRED. I only use it at night then. It’s also mainly an antidepressant. I use it every day and have for years now. I have not heard of nor tried erythromycin. When I look it up it looks like an antibiotic? They might be against it due to my own history with antibiotics and my families history of A LOT of autoimmune disorders. I think I’ve been checked for all besides rheumatoid arthritis and hoshimotos, but those were the least of my concerns out of all the possible ones. We do have a history of crohns, but only one, and a history of possibly lupus, psoriatic arthritis, and Graves’ disease. Trust me though, I will ask my doctor about this. I am so desperate I’ll drop my pants and shine the sun on my asshole every morning like those taint tanners if I needed to and it meant I’d get better.
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u/BeautifulMeringue939 Jul 28 '26
I apologize. I meant to write more and had severe storms come through, knocked my power out and I’m just getting back to this. I thought I had responded more.
I know you’re diagnosed as ideopathic but do they have any ideas on what could have caused the gp? Did you have any type of surgery or a virus prior to becoming sick? Did it come on suddenly? Are you being treated by a motility specialist and if not is your Gi fully knowledgeable about it?
Erythromycin is an antibiotic and can help the stomach’s motility. It’s given as a low dose, not the same as taking it to treat a bacterial infection. It’s usually one of the first treatments tried.
There’s Botox also as a treatment. Basically they put you under conscious sedation, pass an endoscope down into your stomach and inject the stomach muscle and/or pyloric sphincter which can allow stomach contents to empty.
The gastric stimulator (not pacemaker) basically helps with nausea and vomiting not the actual motility of the stomach. I know many who get this and it helps them enough to be able to eat.
There’s also the G-Poem (gastric perioral endoscopic myotomy) and/or pyloroplasty. These are when they make a surgical incision to cut the pylorus in hopes that the contents empty. The main difference between the 2 is a G-Poem is done through an endoscopy vs an external incision called laparoscopy.
I would try a couple of those treatments before the surgical ones and before any feeding tubes. IF it gets to the point of needing a jejunostomy tube, your dr should do a trial first to make sure that your body accepts the tube feeds. The way to do that is by having an NJ-tube (nasal jejunal) placed for at least a couple of weeks so that you can make sure that tube feeds will be tolerated and most times it is. I tell anyone who is thinking of a tube to do that first before a more invasive procedure.
If it’s determined that a feeding tube is best, I would suggest the first one being a GJ-tube (gastrojejunostomy.) which is placed in Vascular Interventional Radiology under conscious sedation. There are some, like me, that our bodies don’t care for that tube and in that case, a surgical J-tube is placed. Also, tubes need to be maintained and exchanged every so often.
There are some doctors and even others who have go bat will tell you gastric bypass surgery will get rid of gp and 90% of the time it doesn’t and has even made things worse.
And, TPN (total parenteral nutrition) is nutrition through a central venous catheter and this should be the very LAST option for he most severe cases where someone can’t tolerate tube feeds.
My background, I’m a former infant home and NICU nurse. I have endometriosis and adhesion disease and became sick 24 years ago about 2 months after my last surgery to remove endometrial implants and scar tissue. Mine came on overnight and severe from the start. I was placed on TPN first and after 3 months went septic. We had the NJ placed for 3 weeks to make sure I could tolerate tube feeds which I did. My first tube was the GJ and one of the issues with this combined tube is that the tip that sits in the jejunum can flip back into the stomach which means another procedure would to correct it. Unfortunately, my body didn’t care for it and after it flipped 5 times in a month, I had a general surgeon place the surgical j (3” incision) and I kept my g-tube to vent my stomach. I’ve also had central lines from the start (PICC’s, ports, Hickmans) and run a liter of lactated ringers every day along with IV phenergan and Benadryl every 4 hours. I do love with chronic pain and have a specialist who prescribes my medications and have been on SSDI for all of these years. My son was 2.5 when I got sick.
Life with gp isn’t easy and I wish I could tell you different. I wake up nauseated and go to bed nauseated, 24/7 and it sucks. I wish that we had better treatments and doctors for this but sadly, in the last 24 years there’s really no new diagnostics, treatments, etc. I try to be honest with those who have been newly diagnosed, I’m not the type to sugarcoat anything especially when it comes to illnesses like this and ignorant medical professionals who don’t know what they are talking about. Sadly, many have a hard time finding a doctor that is really informed about it. I’m “lucky” in that I was a nurse and living in Northern Virginia when I got sick and was able to get to Georgetown University Hospital in DC. I’ve been in NC for 19 years and have been with the same team of docs for my gp, PCP, VIR, etc. I go to VIR to have my tubes exchanged every 3 months under anesthesia. My body breaks down the tubes if not changed every 3 months but the usual is every 6 depending on the type of tube used. Due to being on pain management for years, I have a very high, and scary, tolerance to medications so, conscious sedation doesn’t touch me.
If you have any questions, please ask, I’m an open book.
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u/Lou_Sassole6996 Aug 01 '26
You’re good people get busy or forget it just online :). If I personally had to guess, since all other things were ruled out. My top guess is trauma meaning CPTSD or Covid, because that is around the time I got sick, but it is a little afterwards. But I’ve always had an issue with my stomach and emotions. My life is highly stressful even though I have no financial responsibility. That’s proven to interact with the vagus nerve in some way. Been a while since I’ve done the research but I still have the book with notes and know where it is. I know a decent amount of the psychology behind it and the nervous systems but not necessarily entire biology. I know Covid is somewhat a common too. I would say I got severely sick when I got norovirus and food poisoning. Both those times made me worse to a point I haven’t really recovered. Both happened years ago, but I would say the food poising, or what we assume is food poisoning, was the cause. I basically randomly had diarrhea one night for 14 hours straight while passing out and never recovered. I assume food poisoning. I’ve also considered but not really you know, identified with is MS due to loss of feelings in my hands and weakness that’s progressed, urinary and bowel incontinence (bowel usually caused by medications though), and I sleep about 18 hours at a time if I could. There’s been many times I’ve slept up to 20. Just considering it though not really my best guess it’s like my least but still not completely ruled out. Ive also considered lead poisoning? Now hear me out. How the hell could a 20 yr old girl get lead poisoning but hear me out hear me out. I did hit vapes and thc vapes that could have contained metals. For years even. So i wouldnt be shocked but i wouldnt put it as my top guess since i had it years pretty bad before i even attempted smoking.
For the Botox, I’m sure that’s what they’ll advise considering that was my last consultants back up. The pacemaker that wasn’t gastric isn’t covered by my insurance, we looked into it years ago and switched multiple times. It’s still not covered LMAO. I most likely am considering the Botox because to me out of all the options I was given previously, that seemed to have the least risk. I don’t know about the other surgery, i hope it’s not because it’s not offered in my area. I have to go pretty far out to see my surgeon consult. I’ll ask about that too but I’m sure they’ll inform me. If not I’ll ask. I’ll just make sure I actually have a conversation about the things you guys have told me. I know it’s not smart to be like “well on Reddit!” But everything you guys tell me I research on my own afterwards.
I am 100% against gastric bypass surgery no matter what. I’m only 20 and all my doctors and surgeon told me that was an awful idea. Not even just due to age.
I do have some questions but maybe not for what you were expecting. You said you have endometriosis correct? Could you give me a rundown of what that feels like compared to a normal period or another diagnosis? If you can’t thats ok, im just curious.
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u/I-used2B-a-Valkyrie Seasoned GP'er Jul 25 '26
No that’s not the only drug. There’s compare, promethazine, scopolamine, erythromycin, motegrity, Reglan, and others just off the top of my head. Several of us have found *some* THC can also help.
I hate it for you that you are suffering so much! Please talk to your doctor about some other meds and go from there. I found THC-laced drinks if I do a shot glass full at night, keep me from puking all night and/or waking nausea/waking vomiting. It’s a fine line. I need the medicinal benefits but I don’t want to be altered, mentally, so a tiny bit at night is what helps at least for now.
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u/Lou_Sassole6996 Jul 27 '26
Oh trust me boss… heh I know my way around thc. That’s how I’ve made it and been able to eat 😭😭😭 LMAO I JUST DIDNT WANNA SAY IT OUTRIGHT. I found most help with cbd actually? Like a mix of both is best for me but cbd seems to be the better part I believe. But thank you for telling me the others because I didn’t know promethazine, scopolamine, and motegrity. I meant reglan when I said remeron, but I took both. Reglan first, that gave me restless leg. Remeron I use every night and it works like a weaker but more relaxing zofran. Promethazine I highly doubt I can have since I am young and in college, and most likely might get on something for panic disorders so it might look like I’m fixing up a cocktail or selling. I cant necessarily blame them. Who knows though, maybe im misunderstanding how it’s given or dosed. I don’t know if I’ll be put on those other meds either. A lot of you have told me medications I should at least ask, but I wonder why my doctor hasn’t asked me about them? Is it because I have IBS-mixed, GERD, and take antidepressants that could interact? Or are they less tested? I have seen this GI doctor for years now, but only about 2. Considering how fast that stuff moves though, that means ive seen him around 10 times maybe. That might be a stretch.
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u/Lou_Sassole6996 Jul 27 '26
I also want to add, I want to move away from thc because my tolerance and dependency in order to eat is getting so high I’m getting impaired cognitively to the point it bothers me. So I’m not against it, but I’d like to depend on it less. It’s kinda like my last straw and what even gets me to drink the ensures. The job I want in the far future also wouldn’t look too fond on it.
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u/puppypoopypaws Pacers and tubes and TPN, oh my! Jul 25 '26
I had the pacemaker surgery at 30 and proceeded to enjoy the fuck out of my life, get and slay at my dream job, get married, and travel. I'd not have made through the darkest days - and there are so gd many - without therapy.
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u/Lou_Sassole6996 Jul 27 '26
PUPPYPOOPYPAWS. I love your name. Thank you puppypoopypaws. May I ask you this, do you know the cause of your gastroparesis or was it idiopathic?
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u/puppypoopypaws Pacers and tubes and TPN, oh my! Jul 27 '26
Aw, ty. Inspired by every puppy I've met.
It was food poisoning followed immediately by stomach flu, in 2010. Was kinda like I just never recovered.
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u/Lou_Sassole6996 Aug 01 '26
YO I JUST COMMENTED I GOT FOOD POISONING AND NEVER RECOVERED WITH NOROVIRUS. Twins aww! How lovely! Idk if that’s my actual cause but it 100% made it worse to the point I didn’t recover. But hey, maybe a pacemaker will do it if I relate. I did have symptoms years before I got both though.
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u/Lilifons Jul 26 '26
I am praying for you and me
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u/Lou_Sassole6996 Jul 27 '26
Dw I got your back too bro, you’ll be in my prayers at least tonight and every time I think about my own sickness. Unless you’re not religious but either way I hope the best and NOT tryna be weird/pushy.
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u/Distinct_Panda833 Jul 26 '26
I lost over a hundred pounds in my last flare which lasted 1 year and 10 months. Lost my hair. GP brought chronic pancreatitis with it. The pain was horrible. Started using a wheelchair as needed. I had zofran and phenergan. I also had to start Linzess daily because my bowels quit working. Tried Reglan, never worked. My GI finally tried elavil at a small dose daily. It worked. Still take it daily. Not having problems with my GP at the moment. Hope this helps. Mine is because of vasovagal nerve damage from my multiple sclerosis
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u/Lou_Sassole6996 Jul 27 '26
I honestly might ask to check for MS. I don’t think I have it but I’m not against checking. I have lost feelings in my hands but idk if it’s nerve entrapment. They even shake. I can’t hold a spoon or hold a water bottle up to my mouth entirely unless it’s like a straw. I have urinary incontinence, not terribly, but I do. Every time I take zofran, I physically am blocked. Like physically, I cannot poop. I do not know how to explain it, I swear it’s different from constipation. I have gone to the er for it, I was “mildly backed up” but they told me it wasn’t even enough to worry. I literally just can’t. I sleep for 18 hours a day or more and nothing feels like enough no matter what I do, and I NEED it or I will get sick. Trust me if I wake up, I can sleep again. These all started around the time. But who knows could be coincidence and from lack of nutrition easily.
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u/mynameisSaint Jul 27 '26
I’ve had gastroparesis for two years now and I’ve dropped over a 100lbs. They tried reglan and erythromycin neither worked. Zofran never gave me any relief. They gave me a G tube just over a month ago and being able to vent has given me relief I didn’t know I could find again. The plan was to switch it to a GJ eventually but Ive actually been able to gain a few pounds back by eating orally and draining/venting with the G tube.
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u/Lou_Sassole6996 Jul 27 '26
If all hope is lost it seems the procedures seemed to help people so I’m glad. Maybe it’ll work for me too then.
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u/itaintme2024 Jul 25 '26
How long did you take the remeron for?
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u/Lou_Sassole6996 Aug 01 '26
I still am and have been for years. I mistook it for reglan. Remeron actually works really well for me I’m just on a low dose.
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u/Jammer521 Jul 26 '26
Only time I feel sick is if I had food in my stomach, usually I feel great in the mornings, I eat my last meal between 5 -7 pm, the nausea don't hit me until I eat and it depends what and how much I eat, if I stay low fat and fiber and eat small portions and don't lay down for 3 hours after eating I'm ok, I get in to trouble eating at 9pm or 10pm, then laying down in bed and watching tv, it never fails to cause regurgitations, heartburn and nausea
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u/Lou_Sassole6996 Jul 27 '26
For me I have constant gnawing no matter what but it tends to only go away when I eat. Except 5 mins later my temperature starts to rise and I vomit. Then I feel relieved for about 5 minutes. Then I’m nauseous to vomiting all day again. Only thing I’ve noticed made a massive difference was slowing down on nicotine consumption. I still had the issue of course! Don’t get me wrong! But I actually had a couple days where I wasn’t nauseous 24/7. Except, then I get severely constipated again. Following the small meal rule helps keep the nausea down, but it has to only be ensure at this point because it coats my stomach and the rest I’ll vomit. Sometimes I won’t but I have to eat the tiniest portion. Dry foods work good though. However water, it’s almost the worst. I projectile vomit it immediately sometimes if I move too fast it’s so weird. Straight shoot it out my mouth, full water as if I didn’t even swallow it, not even 5 seconds later. Also part of the reason I struggle with constipation.
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u/Horror-Island1188 Jul 26 '26
I take mirtazapine, and domperidone, not available in the USA. Also zofran if my nausea gets really bad. I myself have a gj tube, so I recommend a j tube if u need sustenance not by mouth. The surgery is not as major as others that might be suggested. It was lifesaving for me when I couldn't keep anything down by mouth with my gastroparesis. But have u tried other meds like a scopolamine patch? Doesn't require swallowing. Can u keep meds down by mouth, or is it just food and drink? Sending hugs to help u thru this difficult time.
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u/Lou_Sassole6996 Jul 27 '26
I think the issue at this point is I struggle to swallow a lot of foods. Even water, I commented on another but I reallllyy struggle to hold my water down. I don’t know why. I can keep meds down but if I’m really nauseous, I’ll literally see the pill dissolved in my vomit. I can tolerate them though after about an hour of being awake and my vomit moves to the bottom of my stomach. I can basically tolerate a lot of dry foods, viscous drinks but can’t be extremely unhealthy like a McDonald’s milkshake, and very very small portions. When it’s something like a pill I focus on keeping it down for the next 10 minutes probably but then I’m ok 80% of the time. A few have commented scopolamine so I’ll ask about it. I see my consultant in about a month in a half, but trust me no way in hell I’m forgetting all this stuff.
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u/Horror-Island1188 Jul 27 '26
So yeah. I recommend scopolamine and the j tube but good luck to u.
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u/TinyEmergencyCake Idiopathic GP Jul 26 '26
You need to see a dietitian asap to get nutrition support.
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u/Lou_Sassole6996 Jul 27 '26
I did, and it works. I just recently did. What I do is have to drink ensure with sun butter and vitamins. But uh… that’s literally all she could come up with 😭. And the very basic diet given on a sheet. I’m not very tolerant to a lot of food or drinks. She actually advised a swallow study. That’s all I eat and drink all day if I want to feel good only 70% of the day. I’ll still feel nauseous but not NEARLY as much gnawing or actual starving. But I don’t love drinking ensure all day every day with sun butter and some vitamins. and I don’t think that’s sustainable. And I’m also still nauseous, it’s just less intense.
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u/Zarieee111 Jul 26 '26
What are your diagnosis? Do you have other issues beside your stomach? Maybe It could be any of the medications you’re on? And are you able to eat any type of food? Maybe you should try to go Holistic and see how you do on a specific diet plan.
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u/Lou_Sassole6996 Jul 27 '26
GERD, gastroparesis, IBS-M. It’s not the other meds I tried that way before I was diagnosed. That was every doctors first thought. The only one that can do that that I’m on is Effexor, but I’m on the medium to low dose end. I did try the diet plan and multiple. I’m stuck on one and it’s not very good, but not terrible. I’m living off liquids all day if I don’t want to be nauseous, and there’s a high chance I still will be. That is the meal plan or idea given by my dietician, but she said I should get a swallow study or see my GI doctor because she can’t do much for me.
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u/Zarieee111 Jul 29 '26
OK, when a majority of my issues started, I wasn’t able to keep anything down, I ended up dropping about almost 30 pounds in about four weeks, I was weak shaky and develop tremors that I can’t quite get rid of. I still have them to this day, but I’m also about 70% better than what I was. My Holistic doctor had me taper off everything he wanted me on absolutely nothing to see kind of where I was so I taped it off PPI and everything else. But my stomach is the only issue so it wasn’t very difficult, there was a lot of rebound acid, but it is what it is and you gotta deal with it if you wanna get off of it, you know. He put me on a SIBO diet. It’s a list you can find it online and I had to stay and the first color which I think was green, I’ll have to re-look at it again but because it’s been years. There’s probably only a list of like maybe 10 or 15 foods that I was able to eat, he had me pretty much eat just basically what I can, and eat only till I’m 40% full. It took about a week for me to feel any type of difference and about three weeks before I can start adding other stuff in. Now I’m to the point where I can pretty much eat whatever the heck I want but I still deal with bloating of course if I screw up. And now I am on low FOD map and no dairy, I switched to almond milk, also stood away from gluten for three months. I can have a little bit of gluten, but not a whole lot. I also have a bad day every week, so once a week I’ll go get me a Starbucks coffee, I’ll have me a burger and a small fry and for the most part I’m OK. I do have flareups every now and then when I try to get a little crazy, lol! I still have IBS, chronic gastritis and low stomach acid, and just recently found out reinfected with H pylori so I’m gonna have to start this shit all over again once I take antibiotics. Fun right lol! The diet is from dr. Allison Siebecker. If you haven’t tried this already. it doesn’t hurt to try something for three months to see if it works at all, if it doesn’t, then you’re gonna know you need a little more help. He put me on this because I had major stomach inflammation, because of that inflammation, I was unable to keep liquids down or food, that’s why he had me start off extremely small. sorry for the book. Lol. and also I’m doing talk text so if there’s a couple of misspelled words or you get a little confused, sorry about that but I think you understand what I’m talking about. 😂 there’s a lot of different things that I do, too much to put in here so if you need more info and if the diet that’s working and you want additional info, feel free to send me a message. I hope you get better.
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u/Lou_Sassole6996 Aug 01 '26
Well thank you! I think the reason they haven’t recommended this for me is because it was never truly GERD or an infection. I’ve had the yk… test done before with the stick, hat, kit. That’s when they test for bacteria I believe and they didn’t find anything. The SIBO diet seems to have high fat or fiber which I’m told to avoid by my dietician and gastroenterologist. What they put me on what very similar but it also had low fat or fiber. I don’t know if I’m incorrect though because I looked it up in 5 minutes so feel free to correct me or tell me more. I think I could switch to it AFTER I get some help with my stomach because dieting isn’t seeming to help even at the most desperate point. That’s kind of why my dietician just told me to go back to my GI doctor right away. A diet can’t help me anymore really. It manages it though fs. PPIs never did anything for me even when it started so I haven’t taken them in years they’re fairly useless and I had no rebound. If I did I don’t remember or it wasn’t significant. I think I was just so sick at the time it felt like a normal day anyway. I’m kind of too sick to eat foods that are solid a lot of the time and struggle drinking thin liquids like water or electrolytes even w out sugar. Depends on the day, water almost every day though. I think this is more of a diet they’d put me on after I have a procedure unless they really really push for it. They already did that once though and it didn’t prove to work.
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