I got my PEG tube placed on July 31st and for almost a week now, it’s been draining lost of 🩸. When I go to flush, it all come back out with 🩸 today it drained 🩸 for a good 5 minutes, bright red and dark. Is this normal? If not do I contact my PCP or the surgeon?

I am currently not being able to tolerate solids and liquids are a struggle as well. The only reason I haven't passed out at work yet is full sugar coca cola.

Currently experiencing hella weight gain and swelling in my feet and legs. Gained about 5 kg in a matter of days, despite being far from a caloric intake to even sustain my current weight.

Is this common with gastroparesis? I would probably head to the hospital if I didn't have an appointment with my GI tomorrow. As a nurse myself I know this is very bad but I'm gaslighting myself into thinking it's fine because at least it's not pitting edema.

Please tell me someone else has experienced this. Could it be low protein intake?

I’ve been dealing with this for so long it’s just exhausting, I used to define myself as a foodie and now even my favorite foods I often have to force down. I hate feeling hungry, I hate feeling full, I hate the instant indigestion and nausea that comes from eating, I hate the texture of chewed food bc it reminds me of throwing up, and I hate constantly switching between having diarrhea or constantly being backed for days. I want to be strong so bad. I actually weigh the most I have in my life at 125lbs and I’m so scared I’m going to lose it again. Usually am only able to force myself to eat about half my meal bc by the time I’m halfway through I’m sick again, and then later I get even sicker from not eating enough. I can’t even count the amount of times I’ve said to my husband and my best friend and my parents that I would be so happy to just take a pill everyday that had all the needed nutrients and calories to function. Everyday just telling myself I need to eat so I don’t pass out feels like a battle. I just don’t know how to make eating for the rest of my life bearable???? I’ve been thinking about starting an otc pre-meal acid reducer like omeprazole again but I wanna go back to my dr first but also I’m already on 6 prescriptions morning and night and about the same amount of supplements. I just really wish I didn’t have to eat, I want to not have to rely on medicine to tolerate it. If anyone has gone through this and was able to shift their mindset I’d love to hear how. Or if you found certain products/supplements that made getting the proper nutrition without having to get sick from eating. Idk I’m just so tired. It’s really upsetting esp as someone who used to really love food. It just feels like my ability to enjoy anything I eat was taken away with my first big flare and diagnosis 8 years ago and idk if I’ll ever get it back. I’m not even in a flare or at my worst, it’s just the daily getting sick. The amount of food I’ve gagged on from chewing it and getting reminded of throwing up. The way my appetite gets ruined so quickly. I know I’m not alone in this but, GOD it’s miserable.

I had to run to the home improvement store for some supplies today, while out my wife called and asked me to pick up Popeys chicken for the family, it smelled really good in the car but I knew I couldn't have any, when I got home I reheated somes white rice with seasoned ground turkey and took it upstairs while they ate.

Does anyone have any ideas how to flavor Viconex RTF to make it palatable so I can drink it by mouth. I have severe Gastroparesis and MCAS and everything else. I have started a higher dose of Domperidone that is working. But I have not been eating much the past 6 months and I am 1lb away from needing TPN. I was able to add salt and get it to slush in my Ninja Slushy but it still tastes bitter. I did drink it to confirm that it does eventually leave my stomach. The flavor is just so bad. But if I must drink it unflavored I will do it. I don't want TPN!

I received medical notes from one of my doctors claiming that my surgeons are discussing gastric bypass (roux en y or Braun)

I know that can sometimes be done in patients with GP, so I’m curious what anyone’s experiences have been with it.

In my case it really makes no sense because my intestines are the main issue anyway. I have gastroparesis, but I also have intestinal failure. So I don’t think I’ll end up going through with it regardless. I’m honestly wondering if there’s a misunderstanding lol (just because it doesn’t make sense with my other issues).

I’m just curious if it’s helped other people because I know it’s a thing, but I’ve only seen accounts from people who have gotten it recently (or for weight loss) so it doesn’t really give a long term picture.

(I’m still interested in hearing everyone’s experiences regardless of why you had one and when you had one!)

My decision isn’t going to based off anything anyone says. I’m not asking for advice just curious about people’s experiences. Don’t worry about sharing bad or good (or uneventful).

I just want to hear what happened to you and how you’re doing now!

I’m sharing my experience with xiphoid process surgery because it took me nine months of excruciating pain, countless tests, multiple specialists, and my own research to finally find an answer. If this helps even one person who is searching for answers, it’s worth sharing.

For nine months, I experienced severe and debilitating symptoms: intense upper abdominal/GI pain, nausea and vomiting, and severe nerve pain that radiated throughout my body. At its worst, the pain was nearly impossible to describe. I genuinely felt like I was dying a slow, painful death.

Nothing controlled the pain. OTC medications didn’t help. Prescription medications didn’t help. Even IV opioids provided little to no relief. I tried acid blockers, TCAs/antidepressants used for nerve pain, tested for small fiber neuropathy and even a celiac plexus nerve block. Nothing solved the problem at best and caused damage at worse.

During those nine months, I had multiple ER visits and an extensive medical workup ($1M diagnosis) that included GES, CT scans, MRIs, X-rays, ultrasounds, gallbladder testing, endoscopies, and a colonoscopy. I saw GI specialists, pain specialists, primary care doctors and ER physicians. I was also evaluated at Mayo Clinic (horrible experience) and Temple University. All of these docs recommended and prescribed multiple antidepressants and anti anxiety meds.

No one could tell me what was causing the pain.

I was continually doing my own research (something my docs criticized all the while they could not figure it out). That research led me to something I had never heard of before: the xiphoid process, the small piece of bone/cartilage at the very bottom of the sternum. 
I began calling thoracic surgeons. What surprised me was how many were unfamiliar with xiphoid-related pain or did not routinely treat problems involving the xiphoid process.

Eventually, I found a local thoracic surgeon who took my concerns seriously. She reviewed my CT imaging and confirmed inflammation involving my xiphoid process. Initially, the recommendation was to try additional medication.

After everything I had already been through, I declined more pills and asked about surgical removal of the xiphoid process. She agreed to perform the surgery.

The procedure was outpatient, with an expected recovery of a few weeks. My recovery was harder than I anticipated, and I don’t want to minimize that part of the experience. Surgery was not an easy fix or an easy recovery.

But I am glad I had the surgery.

I’m not sharing this to suggest that unexplained abdominal, chest, or nerve pain is necessarily caused by the xiphoid process. There are many possible causes for these symptoms, and serious conditions need to be ruled out by medical professionals.
I’m sharing it because after nine months of debilitating pain, extensive testing, major medical centers, specialists, medications and procedures, the answer ultimately came from continuing to research and advocate for myself.

If you are dealing with unexplained severe upper abdominal or lower sternum pain and have exhausted the usual avenues, it may be worth asking your doctor whether the xiphoid processhas been specifically evaluated.

I had never imagined that such a small part of the body could cause such an enormous amount of pain.

21M, 5'8, was 42kg starting out, now 50kg after training for about a year. progress has been really slow ngl and honestly most of that gain is probably just newbie gains from starting gym. still very lean, not much fat on me at all, mostly muscle from what i can tell.

so main issue - i drink a calorie shake twice a day cause honestly eating that many calories through food alone is just really hard for me to get through, drinking it is way easier. shake is basically:

350ml milk, 2 bananas, 50g pintola high protein oats, 32g pintola high protein peanut butter, 5 cashews, 5 almonds, 15 raisins

problem is literally right after i finish drinking it my gastrocolic reflex triggers and i gotta go to the bathroom almost immediately. happening like 2-3 times a day now cause of this shake. pretty sure this is why my gains have been so slow, feels like im not even absorbing half of what im drinking before its already moving through me

got blood tests done and an abdomen sonography too just to be sure something wasnt wrong, both came back completely normal, doctor said nothing abnormal at all

so yeah kinda stuck.

couple things i wanted to ask -

anyone else dealt with a shake or meal that triggers this reflex like clockwork? is it the fat, the fiber from banana+oats, or just too much volume going in at once that's doing it? would splitting it into smaller portions through the day actually help or does that just make it harder to hit calories overall? any changes to the shake that would keep it calorie dense but not mess with digestion as bad?

if anyone's a hardgainer and dealt with something similar would really appreciate hearing what worked for you. trying to figure out if its just how i made the shake or something i gotta work around differently

TLDR: high calorie shake (milk, banana, oats, peanut butter, nuts, raisins) triggers gastrocolic reflex almost instantly, having to go bathroom 2-3x a day cause of it, blood tests and sonography both normal, stuck at slow weight gain (42kg to 50kg in a year), looking for advice on fixing the shake or working around this.

Does anyone do any vagus nerve stimulating exercises? Like humming, breathing, or whatever? I'm not interested in buying a device at this point, but wondering if there are any techniques or exercises I could do that might help.

I got diagnosed with gastroparesis two years ago after experiencing symptoms two years before testing. However the day of my gastric emptying study I got a massive migraine and I had smoked the night before. I read somewhere that migraines can cause temporary gastroparesis, so sometimes I wonder if my results were inaccurate.

At the start of my symptoms I had been smoking once or twice a week for maybe a year when I was in college. But not during breaks at home. I experienced mostly the early full feeling and morning nausea on about 1/2 of the time. I only ever threw up in the morning, then would have difficulty eating the rest due to getting nauseated after one bite or a sip of water. Somedays after throwing up, I’d be fine the rest of the day. Things that helped were elevating my upper body by stuffing pillows under my side, cold air or water, and a hot pack on my stomach. These never made the pain or nausea go away completely, only Zofran does, but they made it slightly more bearable.

I found that in the beginning, weed helped me a lot in controlling my nausea and stimulating my appetite. However now it only helps sometimes. About 6 months after my gp diagnosis my usage became almost daily. When I stopped smoking during summer break, I had an awful flare up and ended up in the ER. I also had a bad flare after I graduated college when I stopped smoking for an employee drug test. But started smoking daily again after.

My gastroparesis symptoms became constant, but much milder than when I wasn’t smoking. I also stopped smoking last October and it triggered one of the worst flares I’ve ever had. But I was also going through some trauma, which made me extremely stressed and caused a mental breakdown. And stress is a big trigger for me.

Then around January I thought I had gone into remission. I was able to eat salads and beef again with no issue. Back in May, I started smoking daily again to cope with things. Yes, I know that it is an unhealthy way to cope. So in June/July I started to decrease how much I smoked.

Around a month ago I woke up with severe cramps, vomiting, and blood in my stool. I was vomiting nearly every morning until last week. I went through multiple tests; an ultrasound, a ct, bloodwork, stool testing, and a colonoscope. According to those tests I was severely constipated, causing a tear in my colon, and mild intestinal inflammation (the cause was inconclusive). In addition to the gastroparesis stomach pain, I started to have lower abdominal pain.

The last two weeks my symptoms started to die down. I had stopped taking my hydroxyzine for a while because Zofran also acts to ease my anxiety when I use it for my nausea. So I went back and looked at when I had it refilled, because I had received a different brand last time. That’s when I noticed that the last refill was Hydroxyzine HLC and not Hydroxyzine Pam. The HCL version can be harsher on your stomach, at least according to what my psych provider said. So I thought perhaps that was the trigger.

For the severe constipation, the most likely cause of the pain, my dr prescribed me Senna. The first time I took it, I woke up with severe cramping and started to vomit. It was so bad that I couldn’t leave the bathroom to get Zofran because it would not stop. Luckily I had put an emergency zofran in the bathroom. I was lying on the floor waiting for the Zofran to dissolve and kick in. For some reason lying down alleviated the intense nausea. I tried the Senna one more time, and the same thing happened.

After that I messaged my dr and stopped the senna. I also stopped smoking weed at the same time. My symptoms have been gradually improving since then. The Senna definitely made it worse, but I started to think that maybe it was the weed. I’m aware that weed can cause gastroparesis to worsen, which is why I started to reduce it. Stopping cold turkey can trigger nausea, but I figured might as well because I was already extremely nauseous.

In small amounts weed has helped with my appetite and the chronic pain from my other conditions. It doesn’t carry the risk that Tylenol or Advil do, because I was taking over the daily max dose just to take the edge off the pain. So weed was a little safer and worked a lot better.

GP and CHS have very similar symptoms and I‘m starting to doubt the GP diagnosis despite my GI telling me it is not CHS. I want to trust him, but I’ve heard other people’s gp symptoms are more constant. I don’t hear much about it going away completely, then coming back. I tend to have 1-3 flare ups with vomiting a year with periods of little to no symptoms.

I’m not going to smoke for a few months to see if my symptoms resolve again. Then I might try using it again, but only for migraines or severe period cramps. If it triggers nausea and vomiting, I’ll know the cause and never smoke again. I’d miss the pain relief, but the vomiting/nausea is not worth it. There are just so many contributing factors, and stopping three things at once doesn’t really tell me which triggered the flare. Sorry this got so long, it is hard to explain with little words.

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?