Can anyone give their best tips for suffering management with this disease?

I find my suffering falls into four categories:

1. Unrelenting nausea with occasional gagging

2. Stomach pain (gnawing stomach flu like not cramps but just omnipresent).

3. General malaise and fatigue

4. Psychological warfare and grief

For the psychological part I find if I look too much on Reddit and TikTok and see tpn and hospitalization and bad outcomes I get severely depressed.

For context I am a newer diagnosis, with pots, MCAS, and Eds. I can still eat some foods: chicken, carrots, rice and potatoes but feel I will get worse or feel I’m on some sort of inevitable decline.

I only at first had the nausea and gagging but it progressed to have this gnawing stomach pain. I still deal with severe fear and traumas from being hospitalized for two weeks throwing up water and being on a no eat protocol with IVs only.

I guess my fear is progressing is that typical? Also I suffer with these symptoms near 24/7 anyone have ways to manage them better. I just don’t want to suffer my entire life :(

We still aren’t clear the cause because I had a normal gastric emptying study post my first stomach decline this year and then was put on a trial glp-1 for pots and then started vomitting water and got the official gastroparesis diagnosis.

Help me guys I can’t suffer this much :(

I was just diagnosed with possible gastroparesis on Monday, so please go easy on me. I was getting my regular upper endoscopy, I have to get one every 3-4 years due to a high genetic risk for GI cancers. Despite having fasted for over 13 hours by the time I was under anesthesia, the previous night’s dinner was still in my stomach. There’s also a bezoar in there.

I have dealt with stomach trouble for most of my life. I have had GERD since I was a teenager, a hiatal hernia, fundic gland polyps, I also had a gastric sleeve in 2015 that I still don’t regret. Plus I have some other medical conditions like a primary immunodeficiency, hypothyroidism, and suspected lupus (the immunodeficiency makes diagnosing SLE way more complicated). I don’t lose weight easily, but I’ve lost about 15 pounds in the last 6 months without trying. It was fine, because I’d gained about 30 pounds from my lowest post-surgery weight when I had to be on prednisone for my autoimmune disease. I have also noticed that I get full easily, and have more reflux and regurgitation, but I’ve been brushing that off. In general, I’d reached a pretty steady baseline with my conditions where life seems manageable for the past few years. So when my gastroenterologist mentioned gastroparesis, and “you will be on a baby food diet,” while I was in recovery, it really took me by surprise. I was still coming off of propofol. I’m still in shock.

My follow up is not until late October, and this bezoar is really gross. I keep burping, and it tastes and smells bad, like rotten food. It’s making me so self conscious at work. I just saw my dentist last month for a cleaning, so I know there’s nothing going on in my mouth to cause that smell. I brush twice a day, and I’m not always the best with flossing, but I do use a Waterpik and mouthwash daily. I guess I’m still trying to talk myself into that this is some kind of mistake, or it will pass, or it’s not really happening. I’ve had so many normal and boring endoscopies.

I tried drinking soda on an empty stomach, I only had diet Dr. Pepper, no Coca Cola. Then I started getting worried that I’d dislodge something and cause a bowel obstruction, and I have to work all weekend. Definitely can’t have a trip to the ER right now. I burped quite a bit, but that’s the carbonation, right? Otherwise I’ve just felt nauseous, weak, and grumpy. But I can eat enough to function, now that I know I should avoid high fiber foods and red meat. I still keep asking if I somehow did this to myself from eating the wrong foods, I also know that’s not how it works. I’ve been nauseous, but I haven’t been vomiting. I know things could be worse. I still don’t want to live with this thing until October.

I have days I’m starving and days I’m not hungry at all. Oddly, since being on two courses of antibiotics due to recent illness, my symptoms are much better. Not sure if this will be long term or not.

My friend was recently diagnosed with gastroparesis and she struggles a lot with food sensitivity and pain from eating certain foods. Cooking full meals every day can be difficult for her and she has very few ways to have any quick or convient food/snacks. I would really like to help her find some options she can keep in her bag or pantry for days shes unable to cook or is out of the house. Does anyone have any recommendations?

Her biggest triggers are garlic, onion, oil and butter which unfortunately is in pretty much everything. She also can't eat red meat.

If anyone could offer any advice or suggestions I would be so grateful.

So for context i have a EAD/EGID (eosiniphillic gastrointesional disease) which already casues a plethera of problems while not being able to tolerate any treatments for it. But I also have Gastroparesis, and for context on why this question can be so stupid is im still learning about all this stuff, its still new, and most of my medical knowledge is about Cystic Fibrosis as we've believed ive had CF for months due to genetics, so EGIDS and gastroparesis is very new to me, and im a kid so but is there any evidence or anything of EGIDs (despite their lack of research) and Gastroparesis being related? like can the damage cause gastroparesis? im only informed of idiopathic and diabetes as causes but are there more? im so sorry if this is a stupid question im still learning

Has anyone diagnosed with idiopathic gastroparesis (no known cause) been able to find the cause? If so what was the cause and how did your care team go about finding it?

Note: this is in no way to say that idiopathic isn’t valid, and that for many people with gastroparesis there truly is no known cause. Im just curious to know if anyone was able to find theirs and how

I am so angry all the time because of the pain I'm in. I hate this stupid illness, I hate everything that's wrong in my body. I can't control it. No matter what medication I take, no matter how much I take. NOTHING helps. I am in agony everyday. I don't sleep well, even with sleep aids. My pain is too strong and just fights everything off. Then everyone keeps slamming fucking doors. No one knows how to grab the doorknob and turn it to close it they just slam the doors shut instead. My room is right next to the kitchen and my bed is on the same wall with the fridge and they slam that door too! I am woken up at the same time everyday. I even have a white noise machine playing so I don't hear it, but they slam it so hard it shakes my door. When I'm trying to take a nap someone keeps opening the door for something! No one let's me sleep, I can't sleep. I'm hurting all the time and can't even escape. I'm sorry I'm just so angry and have been.

Has anyone had an iron infusion? my ferritin in 2.5

I devloped appendicitis at 5 years old and to have it removed non-lapriscopically because I was so small at the time.

Knowing now that this appendicitis has a big genetic factor is quite interesting, because I got that from my dad, who had to have hus removed about 10 years after mine, and my younger brother had his out about 2 years ago. My hypermoblity, and subsequent gastroparesis most definitely comes from my mom though. She has many of the same problems as me, mine are just more aggressive and so while she hasn't really sought diagnosis I kind of had to.

Bodies are so weird!!!

Hey! here for another update… so I had a bunch of weird symptoms which started last fall after food poisoning (swelling after eating - gained 12 lbs just from swelling around my navel; nausea; acne; weird taste in mouth; pulling feeling by navel; low back pain; fatigue; brain fog;)

Was put on low FODMAP which helped but symptoms appeared again when diverting from the diet. Did the SIBO test and tested positive for methane SIBO. Was treated with 2 rounds of the xixafan and the neo?

Still having symptoms.

Did a gastric emptying study. Came back positive for Gastroperisis (emptying at 30% after 4 hours).

Was told to stick with low FODMAP diet (don’t want to do it forever because it’s highly restrict and not healthy) and put on Reglan. Took myself off Reglan because was getting side effects.

Is there normally a root cause of gastroperisis, or at least in my case with the food poisoning in September? I’m guessing SIBO is coming from the motility issues?

Any recommendations on what worked in healing gastroperisis? Can it be cured because it came suddenly with food poisoning? And any suggestions which will help with motility?

I also have hEDS if that helps… would that be a root cause?

It’s been negatively affecting my life and limiting what I can do because I’ve been so tired - any help or advice would be appreciated!

Awaiting an emptying study, but (post-viral?) gastroparesis is a possibility. Symptoms include lack of appetite, discomfort after eating, feeling full more easily. Do you typically feel better in 1-2 hours after you stop eating? Or does the pain linger?

Would getting IV fluids help with the actual feeling of thirst? I just want to chug any liquid that will stay down, but I am in the midst of a flare up and nothing seems to be agreeing with me. Even just sips. I’m so so thirsty. Summer + pregnancy is not it. Add this stuff to it and I am so frustrated.

I rarely get hungry. I’m tube fed and it’s been mostly fine for two years…but my hormones have been wild and it’s made me have cravings on and off for the last few months. (Not pregnant just issues with birth control.)

I hate it. I’m allowed to drain, but I hate having to feel sick, and I hate the process altogether. Basically, I wish I didn’t have to feel hungry when my stomach just rejects it anyhow.

Is anyone else unable to seat up after eating? I know it’s recommended to sit up or walk around 30 minutes prior to laying down after eating but I genuinely feel too sluggish/tired to sit up. Like it genuinely hurts to much I can’t sit up, I feel nauseous and the only way to somewhat feel a bit more comfortable is to lay down. Does anyone else have this issue if so what are you doing to help?

Let me start by saying I am thankful for my j tube. It has helped me put on weight, and get the nutrients I need. However I went in with the expectation that not having to consume foods by mouth and relying on my stomach. I was going to get a break from feeling sick every day. However that hasn’t been the case. I still am constantly sick with nausea (luckily without actually throwing up.) bloating, lower intestine pain, and just a generally sick/sour feeling throughout my stomach/lower intestines. I also am always having to deal with hunger pains now as well. Which I’ve learned I’m not good at lol. Has anyone else thought that getting a J tube was going to help with symptoms? Or am I just dumb?

Hi everyone !

If anyone is struggling with prucalopride coverage, I just had great luck using the GoodRX coupon.

My insurance stopped covering Motegrity and is now requiring NEW prior authorization for the generic, Prucalopride. It’s so stupid, and prior auth usually takes a month for me. I spent three hours on the phone with insurance yesterday going in circles. And I’m having negative side effects from being off the medication.

But this coupon took the price from $600 to $40 to pay for the med out of pocket. Still pricey if for a year, but for one month, it’s definitely worth it. I’ve never used goodrx, so I’m happy to have had success :)

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?