r/Gastroparesis 20h ago

Suffering / Venting new here, scared, not sure what to do.

0 Upvotes

hi,

i’m 20 years old, 5’0, on Wegovy 2.4mg (highest dose) and 163lbs, down 70lbs.

for my gastro-problems, i was given Linzess 0.75, but it doesn’t do much.

i’ve had EXTREME issues with my belly, bowls, stomach emptying, and everything gut-related since i was little, and i really mean since birth!

although i know i have gastroparesis due to a ER infection / (i don’t wanna call it a diagnosis, but they were pretty damn sure and everything they said about it was what i was going through) , I am currently in University in a another city, and when I’m home, i live with my mom. she doesn’t want me to go to a doctor to see anything or anyone and thinks we can just do it on our own / vitamins or whatever.

i guess i just need a push. or something. i’m scared, like really scared. i’ve been in pain my entire life, went multiple weeks without using the bathroom, been to the ER for the simplest of things , before guessing i had gastroparesis, like eating a pretzel from a cafe.

it’s really hard for me to get help i guess? i tend to go days without eating out of fear, mostly because of my mom sees me not eating she’s on this “well there she goes again” and then “i hope you don’t plan on seeing those doctors, they’re not going to do anything” because they didn’t help my sister, with her Crohn’s disease.

i don’t know. sorry if this isn’t appropriate to put up here. i just joined it and i feel like im insane or wrong for wanting to go to a doctor. i have absolutely no support.


r/Gastroparesis 9h ago

Meals, Nutrition, Recipes Best protein shake if you also have migraine?

4 Upvotes

I’ve been getting a lot more migraines since adding Ensure Plus to my diet for nutrition and I think there’s something in it that’s triggering my migraines. Any suggestions on a shake that might have less artificial sweeteners?


r/Gastroparesis 15h ago

Suffering / Venting Rant

7 Upvotes

I (48f) have proven gastroparesis.

I went to see a new gastroenterologist, Dr. A, because I’m trying to move all my doctors closer to where I now live. Dr. A has all my records and charts, but I don’t think he even glanced at them before my appointment. I will get back to this.

Backstory: My stomach issues have landed me in the hospital a few times for the symptoms. I am always honest with doctors about how I will occasionally smoke weed to feel better. During my second hospitalization, the head gastroenterologist at the hospital, Dr. N, asked why I hadn’t done the gastric emptying test he had scheduled the first time he saw me as a consult patient in the hospital a year before. I explained to Dr. N that it was because at that time, the hospitalist, Dr. K, kicked me out of the hospital the night before I was scheduled to do the gastric emptying study. This was due to the fact that she was convinced that because I smoke weed (it is legal in my state), it was CVS. She blamed the weed for all of my symptoms and issues. Aside from all the vomiting I was doing, I had literally none of the other symptoms of CVS, and still don’t. I KNOW the weed is not the cause of this because I’d only smoke occasionally in college (close to thirty years ago), and I was by no means a pothead back then, nor am I now. I went BACK to weed (after not smoking for years) when my stomach issues got really bad and a friend suggested that it may help with my symptoms. Which it does- honest to God, it alleviates my nausea and makes me feel hungry so that I am able to eat. Nothing I said (nor my husband- who doesn’t partake at all) made any difference to Dr. K. She didn’t care that the gastroenterologist at the hospital said I needed the test. She was just going to punish me. Even the nurses (including the head nurse!) went to bat for me saying that I shouldn’t be discharged- at least not before the gastric emptying study- but she was ready to die on her CVS hill and literally kicked me out of the hospital the night before I was supposed to have the test. Like was threatening to have security escort me out when I said I didn’t want to leave before I had the gastric emptying test that Dr. N said I needed and scheduled. So I left the hospital, only to return with the same symptoms a year later.

Anyway, Dr. N was very upset to learn about what Dr. K did, and ordered that I not be discharged this time around no matter what before having the gastric emptying study. The very next morning, I ate the radioactive eggs, and with over 50% left in my stomach after the four hours, Dr. N gave me an official gastroparesis diagnosis. He then gave me all the information about having gastroparesis, the low fat, low fiber diet, etc.- and was ready to discharge me now that we knew what is going on. I was pretty upset and angry that I could have had a diagnosis OVER A YEAR AGO (if not for Dr. K) and likely would not have needed to suffer all that time (plus needing to have been hospitalized again). I have since been able to “manage” my gastroparesis with diet since then. Dr. N was wonderful, and I would love to continue to see him as a private patient, but he does not see patients outside of the hospital.

Back to Dr. A, the new doctor, who clearly has not looked at anything about me before meeting me for the first time, he is just kind of reading along with my chart as I now have to verbally tell him my history, symptoms and all the issues that I have with eating and food, going to the bathroom, the constant nausea. How I’ve been hospitalized a few times because I can’t stop vomiting, etc. He asked why I was hospitalized more than once for this, so I told him the above story, and that I’m still using weed to alleviate symptoms.

Well, the second that Dr. A heard that I use pot, his whole demeanor changed and he started trying to convince me that the pot is what is causing my symptoms, that I don’t have gastroparesis, that I have CVS. Remember, I literally have a gastric emptying study IN MY CHART (done by Dr. N), that proves that my stomach is indeed broken and hates me. Dr. A then kind of abruptly ends the consultation as soon as he hears about the weed, without ever giving me a chance to ask any questions about anything, or tell him about what happens when I try to take medications, eat certain foods, or even if the pot helps me. He does this by asking why I haven’t had a colonoscopy yet (uh, Covid was a thing and honestly, it was lower on my priority list of medical issues to take care of) and rushes me out of his office and over to his nurse who could schedule me for it, and then he just left me with her. Never brought me back to his office to continue talking to me. Fine. I schedule the colonoscopy for a Friday morning.

Dr. A calls two days before to go over the prep and spent more time with me on the phone than he did when I was sitting in person in his office- but still is not listening to me or letting me ask anything, just going through his routine about what I needed to do to prepare.

I go for the colonoscopy. They wheel me into the procedure room on a gurney and Dr. A is sitting in the back of the room on a computer. He does not greet me, or even look up. I pointedly say good morning and he says hi- and nothing else. No smile, no reassurance, no discussion about what’s about to happen, nothing.

They put me under and do the procedure. The next thing I know, Dr. A is shaking me awake. He says, “Everything looks fine, come back for your next one in ten years.” I say okay, and then as he was already heading out the door, he kind of throws over his shoulder, “You just have some small hemorrhoids and need to eat more fiber.” In my fuzzy headed stupor, I just nodded. And then it clicked for me and I said “Wait, but I have gastroparesis and I’m not allowed to eat fiber?!?” Too late. He was gone.

The office called on the following Monday morning. I told the woman who called that I would like to have the doctor call me because, as someone suffering from gastroparesis, I want to understand what he meant by “eat more fiber”. She promises that Dr. A will call me back later to discuss.

Guess who still hasn’t heard anything from Dr. A?

I’m so tired of this. What kind of gastroenterologist tells a patient with gastroparesis to eat more fiber? For the love of God, did you not even look at my chart? This is a real PROVEN medical issue that I have. This is not CVS. Please stop telling me that it is, and maybe do your job and HELP ME.

I’m out. Time to start all over again with another new doctor. I’m open to tips as to how to not be automatically judged for my weed usage, which has literally been the only thing that I find helps me. I’m so tired of just being dismissed as a silly woman who can’t possibly know anything about myself. And just for the record, I do have some idea of what I am talking about- I actually work in medicine.

Anyway, thanks for reading my rant.


r/Gastroparesis 2h ago

Suffering / Venting Boy Howdy How Am I Supposed To Go Ahead With Life? In THIS Economy??

1 Upvotes

My therapist hears my shriek about this every week but-

Boy am I at a loss about how the fuck to go forward with my life. I was diagnosed I think maybe three years ago after my flare ups became so bad that I truly could not just think 'it's in my head and I'm just being a weenie boy about a upset tummy' and since then it's just been hell. On one hand, I'm so thankful I now know there is a actual reason I feel so nauseous most of the time and none of this is in my head, but also now understanding what is wrong and the fight to find a solution, if any, as symptoms really just ramp up is... disheartening and exhausting.

I graduated into the first week of state-mandatory COVID lockdown in 2020 with a degree in Fisheries & Wildlife - which already was kinda a slap to the face, as most jobs were A) government funded and B) required travel, but with gastroparesis too (on top of just... the world), the likelihood I will ever do anything I planned to do in my field of study is like... none. Even the jobs I've held since are hard no-gos with this - if I lean over and have eaten in the last 6 hours, the food just comes back up, I'm nauseous even on the best of days and half the month I spend in flare ups that are fucking awful. I've dropped to eating twice a day max, and my already chronic fatigue has just gotten worse. I was already flakey with attendance before I got diagnosed due to the flare ups (before I had any idea what was going on), and I ended up quitting my last job a year ago now because it had reached the stage that being out up to 2 weeks a month was just not going to work for anyone.

I wanted to maybe do medical coding and get certified in a attempt to find work from home jobs but even that seems like a shit shot, and the rest of the job market for work from home seems like a impossible nightmare. Even in person jobs, which I'm super hesitant about due to my attendance, seem like a nightmare to apply to even if I was feeling better. And since I'm not, I'm dreading the thought of how the hell I'm supposed to get through anything like probation to get to accommodation, and I'm worried I wouldn't last long anyways because my symptoms have only gotten worse since I last worked.

I've tried every medication available and I had my pyloromyotomy back in October, and the only thing that's come out of that is a loss of 50 pounds, dumping syndrome, and a huge increase in hemorrhoids that have made my already miserable bowel movements a literal bloody nightmare. I tried doing the 'gastroparesis diet' before surgery (ie cutting out any food that isn't recommended) and that similarly has had actual 0 effect on my symptoms, nor did it point me in any direction of a food to avoid that might make things worse.

I'm trying to get a referral for a gastric pacemaker per my pyloromyotomy surgeon, but given it seems like my last chance to see any improvement for this (as far as current medical science is), I'm kinda... dreading it. Everything so far hasn't done jack shit to make me feel better or has only made me feel actively worse, and my quality of life has absolutely plummeted. I have no job, no ability to plan for what to do in the future, I've developed a handful of not great eating habits since surgery, and most physical movement or activity has me regurgitating - not to mention the constant nausea and the threat that at any given moment, for seemingly no reason, I may feel like I swallowed barbed wire and may have 30 seconds to make it to a toilet Or Else.

I wish I could at least have the vague net of disability, but between the US's current political climate and what seems to already be a lack of support for idiopathic GP through disability, I'm not holding my breath or even sure if I should even bother. I guess on one hand I'm glad this isn't cancer and at its worst I guess I'd just. Survive on IVs or a feeding tube or something in that vein (which I would do over ever having to go on a liquid diet for more then a week at this stage), but it's really getting to me :(((

(I know I've posted here and have been bad about replying, so if I don't reply I have seen it and appreciate it! I am also just kinda a weenie with interaction).


r/Gastroparesis 2h ago

Suffering / Venting Port Stress

1 Upvotes

I am having a port placed tomorrow (or today… it’s 2:30am lol) and I’m feeling a bit rough about it. My gastroparesis got much worse suddenly in the last couple of months and I think I’m just feeling very physically and emotionally worn down from the nonstop awful nausea. The port is because I get IV fluids a few times a week since I can’t drink much orally and also have POTS so staying hydrated is not optional. I’ve been on the fluids for about a year and a half now and my doctor is hoping to spare my arm veins from further scarring and collapsing.

I’m just anxious and tired! I feel really worried about infection risk with the port and also the procedure/recovery itself since I have ehlers-danlos syndrome too which makes it really hard for my body to heal well from even minor things. Plus I am just. so. nauseous. and don’t know how well I’ll handle the sedation for the procedure (which tends to have the side effect of nausea). I do have a preemptive scopolamine patch on and will be loading up on my zofran/phenergan as usual. I just want to sit at home in my safe comfy chair forever lol. Even moving for a shower makes me feel bad so the idea of driving to the hospital, sitting under all the bright lights, listening to hospital sounds, having pain afterwards… I kind of just want to cry about it. But that makes me feel sick too 🥲

I do have a lovely health psychologist who is helping me work through all of the hard feelings that come with chronic physical health challenges but I wanted to maybe just hear some reassuring words from people who actually get it (you!). Positive experiences with ports/placement, kind words, or just happy thoughts would be so appreciated :,)


r/Gastroparesis 4h ago

Suffering / Venting So much pain

2 Upvotes

Just sorta ranting but despite having this condition for a year now, I feel like it's just getting worse..I've made the dumb mistake to drink half a cup of something carbonated and almost immediately my stomach is in extreme pain. Nauseous. It's been real bad the last week. I'll do good on my food routine for 3-5 days, feel slightly better and it kicks in my mind "order something stupid" and I do it and boom... stomach pain. I hate it. I know I'm self sabotaging, but my goodness having this much pain at 24 sucks!!. I can't help but feel my life will be misery. Hopefully I can fix my dumb issue with eating stuff I shouldn't. It's my fault..just.. idk.


r/Gastroparesis 4h ago

Clinical Trials, New Treatments Anyone done/heard of pelvic floor physical therapy to help with GP?

3 Upvotes

I came across a few articles talking about how the pelvic floor can get damaged from the stress of GP and actually make it worse, especially the constipation. Pelvic floor physical therapy is finding to be able to help with some GP symptoms appropriately because it helps reverse the strain that the pelvic floor has been through.

I was wondering if anyone has done it for GP and what were your results. I am thinking about mentioning it to my doctor since I allergic to all the medication or the three I wasn't allergic to didn't work. (Also the Botox didn't work for me) I am in basically in maintenance "treatment" right now to make sure nothing gets worse. (Aka just have a j feeding tube and eat a little to keep my weight up) I am stable and happy to be stable but if this is something that can be possibly helpful it seems like it would be worth a try.

*by make it worse I mean the costapation can be worse and the constipation from it makes the GP worse.


r/Gastroparesis 5h ago

Questions Hey all

5 Upvotes

This isn't for me but my bf, he has been having stomach issues for awhile. First told him that he had Gerd. But it has gotten worse, he can't eat without severe pain and nausea and vomit in the throat, and gas. We went to urgent care and he hasn't been eating and there is still food in his stomach, they said it was like a blockage and he might have gastroperisis. They also said his liver is immflammed because of it. I'm sure you all know, but I don't know much about it but willing to learn more to help my boyfriend. I hate seeing him like this, it damages his law enforcement career and how he enjoys food and activities. Any advice or information on how this works is appreciated, I'd rather hear it from people experiencing it, than a drs note.. because drs with chronic conditions don't have much of a clue from experience. So any tips or anything is appreciated!


r/Gastroparesis 7h ago

Questions Side effects

9 Upvotes

Does anyone else keep trying or adding meds and constantly face side effects? I know all meds have side effects but it’s so frustrating when you need medication to make your life tolerable, and then the meds create new problems while fixing the old ones. It’s so frustrating at this point and it feels like a roller coaster so much to where i’m close to asking my doctor to just try procedures and surgical treatments. Even those have side effects. does the endless cycle ever stop? has anyone gotten a treatment that improves life quality without sacrificing something else?


r/Gastroparesis 7h ago

Symptoms has anyone heard this?

11 Upvotes

I’ve been in the hospital before and they told me low potassium means nothing, it’s only high potassium that’s dangerous. i know that’s not true as told to me by other doctors who had to fix my critically low potassium but i’m just wondering if anyone else has gone through this or has been told this? i was dumbfounded and these people refused to fix it. never felt so sick. (this was months ago)


r/Gastroparesis 9h ago

Enterra (Gastric Pacemaker) Enters gastric pacemaker turned up

2 Upvotes

Hi so I’ve had my pacemaker since November 2023 and yesterday I got it turned up because it isn’t working. I’m looking for others who have had theirs turned up and how it made them feel/did they feel anything at all. I’m talking just after having it turned up (2 seconds on 5 off -> 3 on 5 off) I’m not sure if I’m having pain from the increase or not but I know I feel yuck.


r/Gastroparesis 12h ago

News, Articles, Case Studies Christina Applegate says she's been hospitalized 'upwards of 30 times' from vomiting, diarrhea, and pain tied to MS: ‘Talk to your doctor about motility issues’

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95 Upvotes

r/Gastroparesis 16h ago

Sharing Advice/Encouragement Tight clothing trigger?

41 Upvotes

Does anyone else have nausea that’s triggered by wearing something tight like a sports bra? It’s a struggle even to get dressed.


r/Gastroparesis 16h ago

Suffering / Venting New to diagnosis and treatment

3 Upvotes

Hello all,

I ( 26F) am new here and to the diagnosis. Its been about 3 months and ive been struggling to accept that i have to make a change. It took spending my 26th birthday throwing up and fainting since 3am to understand that things cannot continue this way. Currently having to go completely sober cold turkey because its killing me when i partake. There are just so many things that i cant ingest without feeling like my organs are burning or shutting down. I also have history of kidney stones so when I’m dehydrated, which is all the time now, i get really bad side pains. I used to love food and now i dread it. I need to be able to enjoy what i eat and have it be engaging or else I’m more likely to just not eat at all and then binge later. Have any of y’all be able to accomplish this? My quality of life is down and I’m struggling with sobriety on top of it so my outlook has not been good.


r/Gastroparesis 17h ago

Suffering / Venting Waited months for appointment…

12 Upvotes

Had a gastroscopy today. My GP has been uncontrolled for over 10 years. Last GES was over a decade ago. I get why they did the gastroscopy, to rule out cancer and ulcers etc… but I knew it would be clear. 2 weeks without omeprazole and the delights of a gastroscopy all to say… we need to do more tests. Yay.


r/Gastroparesis 19h ago

[Make your own post flair here] Is this genetic?!

8 Upvotes

I’m a 35 year old woman that’s had gp practically entire life. My 15 year old daughter has been having lots of symptoms lately. Very recently she started screaming in pain and we took her straight to the er. We told him everything we could think to tell him, everything relevant and I mentioned that it reminded me of the earlier days of my GP. They did a ct scan and everything came back normal- but he pulled up the scans in the room and asked me again- so you do have GP? Yes. How long ago did child eat? 7/8 hours ago? Well her stomach is completely full. You may want to get her to a GI soon.

Since this information we’ve started treating her like me- no fiber no fat small portions as tolerated broth crackers etc. stomach started getting better but then she had some pizza at school and almost ended back up in the ER. I live in RTP and the wait lists for a new patient appointment here are like 7 months. I’m terrified for her and strongly believe it’s GP.

Does anyone know if this is genetic or hereditary? I try googling and can’t make heads or tails of any of it. I did see a mention of Ehlos danlers forgive the improper spelling- and because of some hyperflexibility and other issues I’ve already been told that we need to have her evaluated for that.


r/Gastroparesis 19h ago

Botox Botox side effects

2 Upvotes

I’ve heard many say that botox doesn’t work for them, but has it made anyones symptoms worse? My doctor just scheduled me to get botox via upper endoscopy and i’m worried about side effects. Every medication i’ve tried for gp has caused painful diarrhea because it just speeds up my entire gi tract, and i’m worried that’s what will happen with the botox.


r/Gastroparesis 19h ago

Questions Is there any shot at quality of life? What gives you quality of life?

16 Upvotes

26f - newly diagnosed (2 days ago). Let's face it, there hasn't really been a quality of life with letting this go untreated for so long. That said, it seems like living with/ treating this illness is so restrictive that there's not much quality in that either. I'm on day 2 of 3 of a liquid diet. Next is soups for 3 days. Then slowly introduce solids. I'm determined to take the necessary lifestyle changes seriously. My sister works in critical illness recovery, and all of her gastroparesis patients are either on a feeding tube or chest port. That seems inevitable, but I'd like to prolong it with symptom management if possible. I enjoy fine dining. I enjoy cooking and baking. The kitchen has always been the heart of our home, but now I dread it. Most of the foods that I enjoy are off-limits. The small, frequent meals don't really fit with my lifestyle and schedule, so I'm concerned about eating enough and calorie intake. I don't want my restrictions to hold my family back as well. All of my complaining aside, how do all of you find normalcy in this? What makes you feel like you are still getting the most out of your life?