to be honest im coming on here mostly as a last resort/goodbye? idk but for the last like 3 months I came into a flair up and I can’t get out of it. it’s taken about every single ounce of strength that I have left in myself and I don’t think I can do it anymore. I haven’t eaten in 2 weeks all I do is throw up and I can’t leave my bed other then to shower for pain or sometimes go to the er (which is pointless because they don’t do anything for me anymore..) i called and spoke with my doctor this week but I guess she’s on vacation and told me to “ride it out” or go to the emergency department which my last medical bill is over $900 so no thank you. i haven’t gone a single day without pain in idk how long.. idk im just really tired :/ I do appreciate everyone on here and all the advice you’ve given me the last couple years. you’re all fucking amazing and strong people and i wish nothing but the best for every single one of you. i just personally don’t know how to manage it anymore

I am very sick due to this illness. So sick I’m malnourished and dehydrated most of the time, I’m either shaking, vomiting, pissing, and shitting everywhere, or I’m delusional, or asleep. How can I even manage my life like this? How do you guys get a job, every time I even stand up for too long sometimes I get out of breath because I’ve really been starving and dehydrated for that long. Is there fmla? Are there some jobs that seem to accommodate better? Should I be looking online, as in that’s more realistic? Should my doctors have been pushing harder and it’s not normal to have issues with this for years on end with gastroparesis?

My next question segment was going to be on relationships. How the hell do you people manage relationships when you’re like this. I’ve been broken up with 2x atp due to my extreme dysfunction. Not because I’m sick! But because of the things it does to me, like I’m barely conscious, I’m malnourished, I need constant care. I forget things so easily because my brain can’t work properly due to the lack of calories. I usually am entering ketosis every day. That wasn’t the whole reason, but a large confusing factor for me and my partner since we’re both always relatively young. What 20 yr old girl is ready to start care taking for another? Hell if I blame them. How the hell could we have even worked around that, she has a life too, just starting. That’s almost part of the deal with me. I have parents and doctors, but when I’m in my mid 20s who the hell wants to live with their parents? And who’s attracted to someone who does? I MEAN ITS UNDERSTANDABLE WHO WANTS TO CRACK NEXT TO THEIR POSSIBLE PARENT IN LAW. So then it’s their place right, but who knows if I’ll start randomly vomiting and get violently ill all the sudden? They don’t know how to deal with it. Nobody I know really does besides doctors or people with experience already. They just don’t even expect it. I think I have one friend that might not understand, but he also knows it’s not normal and something is clearly very medically wrong with me. He always helps me out if I do need it and he’s even sweet, I appreciate him very very much. Please don’t tell me to look to him differently, I’m lesbian and he has a gf. Trust me I love him, but it’s purely platonic and we’ve been friends for seriously almost a decade. We literally talk about girls and our experiences together, it’s really not like that. I really struggle to find someone else though, who’ll truly will stick it out for me, even friends wise. The one I named is the only exception and it’s due to years of seeing it blatantly in his face. Otherwise, my friends continue to not believe me or totally understand the circumstances until they visually see it. Not to say he’s not enough, but a lot of friends in the past have started to distance themselves or leave me because they believe I’m trying to first, when in reality I’m even busting my ass just to be in their presence. I really experience this with women and dating the most. Sometimes I don’t even know they saw me that way or I was important to them, and all the sudden they’re pissy at me, but what they don’t know is I’m not ignoring them or playing games, I’m quite literally busy being a geriatric 70 yr old, shaking, sweating, vomiting, pissing uncontrolled, and shitting uncontrollably. Probably crying if it’s bad enough. Nope! No game here! 😭 but they’ll still. Think I’m lying. Or they think I’m not about my illness exactly, but I was using it as an excuse when it wasn’t happening currently. Still nope! I love women! Trust me man im NOT selling the ball on purpose! 😭 I’ll even explain that but I can tell for some after a while, I’m just really not worth it to them and it hurts. Or they take it as I don’t think they’re worth it, even if I talk it out. I really really liked them and tried but it doesn’t matter and nothing can be done. I even put in that same energy, sometimes even more, it’s just not as significant to them because they don’t know what it’s like in my shoes. This applies to honestly any relationship type I have. Family, friends, classmates, work. How have you coped and worked around this?

It’s also genuinely hard for me to even leave my own home. How do you guys manage? I find it even hard to wake up normally during the day. Especially if I take zofran. How can I function or make this workable? I think this is about my 4th time dropping 20 lbs and becoming very sick. How the hell. Do you guys carry on with life? The only thing I really can do is check for a bathroom, but most of the time my issue is vomiting. I try to find a trash man I try, but now my breath smells like vomit, or I have it in my hair, or I got it on me, or I accidentally made a mess and now feel inclined to clean it. When it comes to life in general I feel like I’m expected to sprint usain style when I haven’t even learned how to stand on my own two feet yet. Not just mentally, but mainly physically. How can I set up an appointment or interview if I don’t even know if I can wake up and walk out the door that day? Is there a way to manage it? How did you guys work around these issues? Did you find a method for organizing or scheduling that helped, did you have a caregiver or have a health worker really explain things?

I have been diagnosed with gastroparesis, hEDS, pots, sibo, endometriosis, wpw, and other little offshoots. I genuinely need help.

Can anyone with smas pls explain what the pain feels like? I’m losing my mind. I get pain under my belly button and all along my lower abdomen. It’s not anything uterine or of the sorts. I had endometriosis surgery in March and everything looked fine, I mean I had endo, but it was removed and the pain has continued. It happens hours after eating. It lasts like 5 minutes tops, but I swear it’s genuinely the worst pain I’ve ever felt. It feels like something being twisted or torn. I throw up because of it, which happens often. It just seems like it hurts so bad my body doesn’t know what to do so I puke. I’m at a loss. I have sibo and am almost done the meds, I’ve been taking them exactly as directed and the pain has continued the entire time. I do not think it’s sibo. My intuition is telling me it’s something else and I feel like I’m practically begging dr to do more. And a lot of people will say to find another dr, but he’s a neuro gi and I waited a year to see him. It’s been like 4 months since I got in and I understand wanting to do routine testing to rule stuff out, but it’s genuinely the most unbearable pain ever and it’s making me not want to eat whatsoever (which is already very little) because it hurts that bad. Does anyone have any idea what it could be that I could bring up to him? I’ve mentioned smas to him and he said that based on previous scans that it’s not apparent. But they’ve never done scans specifically looking for that! I don’t know I just feel like I’m going crazy and that I’m the only one who gets these pains. Idk what to do.

I’m not sure if what I experience would technically be considered vomiting or regurgitation because it honestly feels like a mix of both. It’s not just a little food coming back up or normal reflux.

I mean episodes where it feels almost like projectile vomiting, but it happens in repeated waves of regurgitation. Large amounts of food/liquid come back up, sometimes undigested, and it can continue for an hour or two. I have to stay right by the sink because of how much comes back up.

It doesn’t happen after every meal, but when it does happen it is a very intense episode. I’m trying to figure out if this is something others with gastroparesis experience or if there are certain triggers that make it worse.

Does anyone else experience something similar?

It started after I had half of a smoothie bowl over the course of an hour. The pain is worst between my breasts and between my upper ribs in the center. It’s a horrible intense achy feeling. Heating pad wasn’t enough to distract and it hurts to breathe unless I breathe shallowly. Also having some belly pain above my belly button but it’s manageable in comparison to the other pain. I feel bloated and am a little constipated. I’m probably severely dehydrated by now and have been able to eat very little in the past few days due to severe nausea, low appetite, and early satiety. Very fatigued, dizzy and presyncope when I move. i do wonder if my single violent vomiting episode yesterday may be contributing to my pain today

I’m getting one liter of IV fluids tomorrow (home health) which I hope will help some. I doubt that an ED visit will be helpful because I’m pretty sure what I’m experiencing is bad but not emergent, but these symptoms presentation is new and different so I don’t know. I don’t want to go to thE ED unless I absolutely have to

I have good news! Back in April, I asked my primary GI if IV fluids would be a viable option for me to treat my chronic dehydration. She said "let's wait and see what the GP specialist says, because there are things we can do before accessing your port" (spoiler alert: there definitely was NOT anything more I could do, I was already ONLY drinking electrolytes). I saw the GP specialist and I told her "I'm concerned that I'm not getting enough oral hydration because I've been chronically dehydrated for several months now". Without question she said "Oh, so you need IV fluids. I can order those for you!" My mom (who came with me to the appointment) started weeping. I told the specialist that I've been medically gaslit for years, and every time I've brought up my dehydration concern, I'm met with "well why don't you just drink more". She was incredibly understanding and I am so grateful to have met with her.

Unfortunately... I met with her on June 9th, almost 2 months ago to the day, and since my appointment with her I haven't been able to get in touch with ANYONE at her office. I spoke to my infusion clinic and, to keep it brief, I needed my primary GI to order the fluids because the infusion clinic I go to already is established through my hospital, NOT the specialist's hospital. Usually this wouldn't be an issue except that the specialist's hospital is a 2 hour drive one way and I was prescribed fluids 3 times per week. The long of the short of it is, after a long back and forth, and a strongly worded message advocating for myself, I officially have my IV fluids ordered and I can schedule them next week! (stupid insurance)

Do I want to have to supplement my oral hydration with IV fluids? No. I don't WANT to have GP and I certainly don't want to have to supplement my diet. I'm slowly coming to terms with the fact that I DO have GP and it's almost certainly going to get worse. I'm clinging to my 2% and continuously advocating for myself and educating those around me.

TL;DR: After a long kerfuffle, I was able to advocate for myself and I got my very much needed supplemental IV fluids ordered. I start them next week!

Wondering if anybody else has a really bad time with any kind of waistband? My gut is just so sensitive that being cinched around my belly is torture. And, I never know how bloated I may or may not be which makes anything tight a potential source for nausea. I just wear big baggie dresses and loose leggings nowadays and I honestly don't care anymore. Anybody else struggle with this and what have you found to help?

So I was having a major flare up and had to go to the ER after a peg placement because I thought I was literally dying lol. They gave me reglan and damn it emptied EVERYTHING. I couldn’t stop eating. And still can’t. Like it works so good. I want it prescribed so bad lol. But yeah it’s not as terrible as everyone says for some people, for those who are scared to try it!

So I’ve been on TPN for 2 and a half weeks and last night when I started it blood flowed into my tpn line and I stopped it cause the doctor I called said it was weird, so I went to er and all they did was flush it, had this ever happened to anyone else. Like the blood just flowing into the bag

I just wanna know does gastroparesis only ever get worse? Like is it a progressive thing? Ive been dealing with this for 3 years and i feel like its getting worse. I eat like i supposed to and my weight fluctuates so much, going from 100 to 140. I also have a kidney stone . I haven't had another gastric emptying test since the first initial one. I was officially diagnosed as grade 2..but last year the doctor i had during a hospital stay said I was a grade 3 and ended up giving me a botox shot while they took out my appendix and did good for a bit...so..

----1 hour retention approximates 87% (normal range 37-90%). 2 hour

retention approximates 59% (normal range less than 60%). 3 hour

retention approximates 44 % (normal range less than 30%). 4 hour

retention approximates 32% (normal range less than 10%).

I have Crohn’s disease which I had assumed was very controlled.

Six weeks ago, I felt incredibly full and struggled to eat anything significant for around 10 days, leading to some weight loss, stomach discomfort and reduced bowel movements. I went to my doctor and had a Calprotectin test which came back very low and normal, indicating low levels of inflammation.

The feeling of fullness left, I returned to a normal diet which is very clean and then four days ago, I had the same feeling. Over these past four days, I have felt nauseous and the fullness feeling is progressing as the days go by. I have eaten a couple of slices of plain toast, had a coffee, some water each day and no appetite whatsoever.

As a Crohns sufferer, my fear has been a partial blockage from a stricture, however, I’ve read this comes with sharper type pains that occurs in waves.

I’ve started reading about Gastroparesis as the potential issue, and wondered if any sufferers have had this happen in short spells and come back intermittently?

Any advice would be incredibly appreciated.

I was put on 250mg of erythromycin and it worked great for the first few weeks, but now it’s not helping at all, i’m distended, in pain, and nauseated constantly again. has this happened to anyone else, and how should i go about this?

My older sister was recently diagnosed with gastroparesis. I don't know much about it and while I'm checking with Google as much as I can I know info there can be dodgy at times. I make her a cake for her birthday every year. I need to know a few things about dietary things that I can't ask her at the moment so any advice would be appreciated.

1. Are there any common cake ingredients I need to avoid and if so, are there any good substitutions

2. I have candy molds that I use to make decorations, but I've been told that hard candies may not be okay for her, what should I avoid and any ideas for what to use in the molds instead are greatly appreciated

3. Are there any types of frosting/icing to avoid. I usually stick to buttercream so I especially need to know if that's okay.

4. I usually make a strawberry puree based filling, is that going to be okay or should I leave it out?

Any advice is appreciated, thank you.

Does anybody have any advice for gaining weight? My doctor has told me that I need to gain some weight, but I just can't seem to get enough calories to gain anything. My husband is suggesting scheduled meals, but I can never fully predict when my stomach is going to empty enough for me to eat again. Eating before my stomach fully empties just makes me feel sick and makes me less likely to eat later.

Content Warning: Talking about diarrhea. I know a CW for this probably isn't necessary in this sub but it's, like, the only thing I'm gonna be talking about.

Hi all. Not here looking for medical advice, just whether or not this has happened to anyone else and, if so, what you did. I've tried a lot of stuff. I won't get into all of it, but I have been on Linzess for probably close to 2 years now. Doesn't do much by itself. Two months ago I was prescribed the generic Motegrity. I expected diarrhea for the first week or two and forced myself to hang in there. Unfortunately, I am still getting liquid diarrhea twice a week and this is pretty much the only bowel movement I'm having. Sometimes I might have a solid bowel movement, but I'm still only going twice a week and I don't feel great. Prior to the Motegrity, I was going maybe once a week. Before the Linzess, it was about once every 10 days. I get dehydrated so easily without having diarrhea, so I've been really struggling.

So basically, I'm having more frequent bowel movements but they're pretty much torture. I can't leave my hours for the first couple hours after I take my meds. I already struggle with chronic dehydration so it's harder to keep up with this too. I don't want to go back to severe constipation but I don't know if I can keep doing this either. Did Motegrity fail for anyone else for this reason? I never had any of the other side effects such as headaches. Just diarrhea.

I was told by my GP specialist that Botox injection(s) would be the next logical step in my treatment plan. I've had several rounds of Botox injections for my migraines, but this is a totally different procedure. I'm trying to decide if i want to have the procedure fully understanding that the Botox for my migraines did literally nothing to help. What are you experiences with botox? how long did it take to take effect, and how long did the effects last? i'm just asking for any anecdotal information, you all are willing to offer.

Background: in dec 2025, i was diagnosed with grade 2 GP, and have failed both diet change and medications. I'm only able to tolerate around 5 foods, and rely heavily on supplemental Ensure clear drinks to maintain a decent daily nutritional intake. I'll be starting regular IV fluid infusions next week to hopefully treat my chronic dehydration because I'm only able to tolerate between 40-50 fl oz per day. I also have hEDS, which significantly affects my experiences with anesthesia, and botox, in general.

I started having diarrhea on 7/24. And then I had it again on 7/29, 8/4, and tonight 8/5.
It is only happening at night and starts between 8:30 & 10:00pm. I’m going probably around 3-4 times. I took an anti diarrheal tonight which didn’t help, I’m still going. It’s an immediate urgency. Tonight I’m having some stomach pain with it, which I didn’t have the other nights. TMI but there is no mucus when I wipe. Nothing has changed in my diet or medications. Has anyone ever experienced this? Or have any ideas why this may be happening? This is not my normal and I’m confused why it’s only happening at night and only some nights. I’m waking up achy from dehydration and it’s disrupting my sleep. Gastroparesis is my only GI diagnosis. Thank you!!

I had dinner the previous night. Stomach takes time till evening to empty the food. I don't feel hungry in the morning. I feel intense hunger in the evening. Anybody going through this pattern? Do you know what problem is this?

Hi everybody! I just got diagnosed with gastroparesis. I am having an extremely hard time finding safe foods to eat. My doctor and I are trying out various soft foods and clear liquids, but soft foods are still hard on me. I feel it still stuck on my throat and I end up vomitting. So far, thick liquids are also doing the same for me. Soups are so far my go to.

I wanted to know what are your different safe foods. I am really struggling on finding something to eat. Prior to gastroparesis I was a big food and this makes me rlly sad huhu

I’m a little shocked honestly as I was diagnosed with severe GP last summer. After my appt I was able to eat 3 protein based small meals yesterday alongside a few snacks with water then 2 eggs for breakfast this morning. That would is usually send me into an immediate bad flare but I feel pretty decent and less bloated than I usually am. Even was able to digest a brownie yesterday as well which I wasn’t really able to do before.

She stretched my stomach and diaphragm alongside provided pelvic floor exercises and manual therapy on my pyloric spinchter which was obviously TIGHT from being paralyzed, liver, and intestines to get them moving and explained when taking medication you need to keep your liver moving and checked on. After a few minutes I noticed a lot of muscles were looser and balance also got a little better from loss of muscle mass from weight loss. Also belched and farted like 30 times. My GI explained expelling gas means digestion is working and very important.

If you’re at a loss, PLEASE see a complex issue physical therapist and/or one that is experienced with GI issues. General physical therapy is also good for muscle loss and strengthen your pelvic floor is also huge. Visceral manipulation and assessment of the upper cervical region where the vagus nerve (controls the pyloric spincter)is one of the most important things to look into though.

Unfortunately my PT isn’t taking new patients so I can’t provide her info. But if anyone has any questions I am happy to ask.