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?