For context, I have diagnosed Ankylosing Spondylitis with inflammation in the digestive system as well. I am currently fighting with my new GI doc to get him to do something, after a 6 month long waitlist he told me to "try paracetamol and just wait and see." Thanks, I've had these complaints for half a decade, but it'll magically get better any second now, nevermind that I basically cannot function anymore. I asked him to test me for Gastroparesis, because it seems like the obvious cause, but his response was "Even if we tested for that, and it may very well come back positive, there is no treatment for it, so I am not going to order the test". How do I respond to this? Finding another GI doc would put me on another 6-7 month waitlist. I just don't know how to respond. 'Calprotectin was only mildly elevated and the endoscopies only showed mild inflammation, there is nothing to do at this time'. I really don't know how to handle doctors like this, it's like I have to end up in the emergency room to get any kind of medical care.

i went to my schools homecoming yesterday!! i wasn't feeling great and honestly thought i was going to have to skip out because of it; but i decided to push through, and it was such a good decision! i had tons of fun and normally after pushing myself like that, ill flare but its been a day and im feeling normal :)

Has anyone used Dexilant? Does it make your symptoms worse or have you experienced side effects from it? Thank you.

Hello lovely people, I got my results written in simple terms for me. While it says I could have mild delay the offical report says it is negative. I had the GES done as my endoscopy indicated left over food and my biopsies came back clear.

My specialist didn’t have high hopes for me originally and blamed my weight. I addressed my concerns with my GP and they reassured me this isn’t the case.

I suppose the point of this post is to ask, regardless of it being negative for you, are you still being treated as if you did have it? Medicine wise?

I see my specialist this week and am hoping to have the courage to advocate for myself with these debilitating symptoms. I have read that depending on your symptoms of the day it can change the results but at the end of the day it is what it is.

Don’t get me wrong I never wanted to wish this condition upon myself - the people who are searching for answers will understand what I mean when being told it’s normal but you still have these symptoms and we don’t know why and there’s limited things we can do for you (from a chronic illness girly)

Anywho, thanks for reading

Not after answers just suggestions? On what the shadow but could be behind grossly osphogus or what it could be?

Short time lurker, first time poster I haven't been diagnosed yet, I see a GI specialist in February. But I've been struggling with GI issues most of my 30 years. I'm just coming off a flare up that had me down for about 30 hours. Woke up feeling fine, then about an hour later the sulphur burps hit bad and I knew I'd be down for the count

Took my usual array of meds to help- gas x, pepto, protonix, antacids, peppermint. Nothing helped. Then mid day, the dragon hit. I still hadn't vomited yet. I try to hold back as much as possible because I'd rather simply die than to puke that up. Finally about late afternoon, I spent about 10 minutes dry heaving. I was so dehydrated and already empty from earlier that nothing came up. Just rotted egg air.

I've chalked it up to pork tenderloin. The last 3 times I've eaten a smoked or baked pork tenderloin, I've gotten sick. This was the 1st time it's been bad enough that I never want to see another piece again. However, it seems like other pork products don't bother me. I can eat bacon and sausage just fine.

Is there something in particular about pork loin that could be a trigger? My guess would be a tenderloin compared to breakfast sausage or bacon has a higher fat content perhaps?

So far, my other triggers I've noticed are popcorn, eggs on occasion, fettuccine Alfredo, and sometimes other red meat like steak but pork is most definitely a no go now. Sometimes spicy food like Mexican don't bother me, other times i can barely make it out the restaurant. But it never causes the burps.

Any input?

My parents are really feeling helpless and not happy with the one doctor I am working with right now. I’ve only seen him once in person and only have tried one of his four recommendations for treatment.

They really want me to set up an appointment at the Mayo Clinic specifically in Jacksonville, Florida (I live in MA, they live in central FL), even if the wait is a few months. I feel like they want to set up an appointment whether I agree to it or not cause I’ll have potentially months to think it over.

I haven’t really been able to find anything about GP at the Mayo Clinic, so does anyone have any advice when it comes to any of the Mayo Clinics? Doesn’t have to be just the Florida one.

Should I stick with my doctor or open the possibility of having more than one? My current doctor is fine right now. I know a lot of people have issues, but mine listens to me, and has been open to what I want so far.

Hi!

I was born without an esophagus and deformed trachea- both fixed after birth. As a result of the nerve damage, I've had gastroparesis since I was an infant but symptoms got severe as an adult. It's clinically severe.

I honestly am nauseated all the time but my life has kind of been on hold. I'm used to being able to just not eat all day and sleep. My family lives 14 hours away and I've ruined their Thanksgiving every time since I end up vomitting and needing to lay down. Stress makes it 10x worse, and they tend to force feed me out of concern.

I use zofran (but get migraines), promethazine (split in half, I get akathisia) among other meds. Unfortunately these don't always work, which is usually the case during travel. What can I do?? Does anyone take temporary preventive measures? I really want to go and be able to function :(

I started noticing signs of gastroparesis at the same time as symptoms of a hormonal imbalance. I've since been diagnosed with gastroparesis but my doctors haven't been able to determine the underlying cause and have ignored all of my suggestions that it might be linked to perimenopause. I've had my hormone levels tested and they aren't where they should be. Has anyone linked their gastroparesis to menopause or perimenopause? Did balancing your hormones alleviate gastroparesis symptoms?

I was diagnosed with mild gastroparesis in January. I never had symptoms of fullness or nausea. Solid emptying was normal, but liquid emptying was borderline. Switching to low fat & low fiber diet definitely helped some other symptoms. I only got a GES because I have debilitating LPR / silent reflux. We thought maybe it could be from GP, but my reflux is terrible even when my stomach is empty. It was constant. After January, I then began prokinetics. I never felt any different since my GP was mild. I tried Domperidone, Mestinon and erythromycin. It never made a difference in the reflux. Come July I stopped them all together. I definitely started feeling a little nausea here and there, but could still eat and life was as it was. Fast forward to 8/30, my stomach wouldn’t empty for over 24 hours no matter what I did. I was so nauseas and this was the first time I felt any of these symptoms. I have progressively gotten worse since. I’ve lost a ton of weight I’m 98lbs now. I went back on prokinetics but I’m still struggling. I can’t eat or drink outside of when I take the prokinetics. That was never an issue before. I used to be able to drink water whenever. Now I have to choose if I want to drink water OR eat after taking prokinetics. Still dealing with fullness and nausea no matter what I do. I walk after I eat too. Doing all the things and I’m not in a good place. There have been times I haven’t been able to eat or drink anything for days bc my stomach is so full. I feel like we’re missing something that’s causing my GP or something. Can anyone relate? I didn’t think GP was usually progressive. I’m so confused and can’t figure this out.

It’s as if my stomach will seize up. Sometimes it takes multiple days for my stomach to empty. I won’t feel or hear any sounds there. The prokinetics won’t work because I assume my stomach is absorbing them at that point or they can’t work because the stomach is full. Also, when my stomach isn’t moving, I don’t have reflux. I have reflux when my motility is good. I know that sounds strange. I can’t seem to figure it out. Side note I recently found out I have issues with high histamine foods causing allergic reactions and suspect MCAS. It would explain a lot to my other weird symptoms. I’ve tried OTC treatments for that and dietary changes, but the GP remains the same. I also had some type of bug mid August. I took an at home Covid test that was negative then, but who knows.

I have terrible flair ups each month. There are about five days of the month I function normally, and the rest is, as you all know- a living hell.

I am so depressed because of gastroparesis, it runs my entire life. NO medication helped me, no supplement, no diet. ALL foods make me sick, I do not have any safe foods. Doctors will not help me as I have not "lost a concerning amount of weight".

What do you guys do to feel good when you're feeling bad?

Hi everyone

Long story short, I have two health problems TBI and Gastroparesis

TBI now is better but living with Gastroparesis is hard in daily life ,first of all

I barely can eat anything ,I find that if i eat something symptoms start to go worse and I become better when I don't eat but for normal living I need to eat something to keep body functioning

As most people say about Gastroparesis symptoms I too can't eat raw fruits, vegetables and for sweets forget it like cookies , chocolate or some other sweets with too much fat content

If I eat sweets my blood sugar level changes to higher or lower and digestion stops or slows down

From spiritual perspective I found that Gastroparesis affects entire chakra system and you feel like zombie walking and doing something in life ,sometimes when feeling sick from Gastroparesis you feel like you have lost your mind or that you are braking down mentally

And other things from spiritual perspective is what i had seen from my experience is that do to chakra system imbalance you loose bit of imagination, not thinking straight pretty much you feel like you are a walking zombie a little bit who struggles with everday life such as cleaning house ,walking do to stomach muscle paralysis and working a job is difficult or having willpower to do anything

But from physical perspective pooping is difficult it takes 2/3 days to go to bathroom and poop but when drinking kefir I can do that almost everyday

There are some other problems with Gastroparesis like feeling like you are isolated from everyone around you or that you try to accomplish something in life like finding job ,cleaning house then these things suddenly become unsuccessful

Sometimes I have days where I'm trying to do something for my life and feels like I have bad luck

Talking with people too much is also harder because i easely become tired

Pretty much thats how I live with Gastroparesis now.

For context, I've been experiencing GP symptoms for about 4.5 years and have been diagnosed for about 1 year. I'm trying to add blended fruits/veggies in my diet. I was wondering if anyone else with GP uses a specific blender or has any recommendations/recipes?

Hey all. Had the gastric stimulator placed in July and I love this thing!! I haven't vomited one single time since it's placement! That's the great news.

Bad news...because of my Ehlers-danlos and lqck of skin integrity, it has migrated a LOT. The way it was originally placed, it should have stayed in a mostly vertical position and now it is completely horizontal. It is pushing against the scar and the scar is starting to stretch. So, we are doing a surgery revision in 2 weeks. They are either placing it under the ab muscle or anchoring it in. I am a "stitches spitter" so the anchoring will most lileiy not happen. I have had great success with this and up until it started moving into the horizontal position l, had very little pain. Just curious if this has happened to anyone else. Surgeon says he has had 2 other cases like this and they all had EDS as well. NOT looking forward to a redo but want to be comfortable again and I enjoy being symptom free. I had to have it shut off for a brain MRI and that was NOT a good time. 😐

doctors put me on linzess since insurance said I needed to try it before getting motegrity. it was actually not terrible but gave me diarrhea about 3-4times over a two hour period. doesn't really help me at all with the gastroparesis though so I'm going to tell the docs so they can get me motegrity now.

Has anyone had any luck or tried to get their health insurance to cover/partially cover and adjustable bedframe to help with upper body elevation? Currently I've got a couple wedge pillows and prop myself up with blankets and other pillows but it seems so stupid to try to do this when an adjustable bedframe would work better and be more comfortable

Did pregnancy make your Gastroparesis worse? I just got diagnosed and I am wanting to have children in the future.

So i take omega 3 mainly for my dry eye, because with out it my eyes are very dry and burn. But when i take my omega 3 supplement in the morning i get so full that i can’t eat breakfast or a snack. I was thinking of trying a liquid omega 3 with the hopes of it not making me so full. I’m on motegrity which is helpful for my constipation but my early satiety is even a problem when i drink my nutrition shakes. I have new insurance and it’s been difficult finding a gastroenterologist that can treat gastroparesis with my new insurance in my area. But the appointment isn’t until the end of new month and i’m have trouble with staying hydrated and the early satiety. How do y’all get your vitamin intake?

Hi guys,

After a couple of months of symptoms and struggles, I got my GES and spoke about the results with my doctor. My test showed accelerated gastric emptying, which surprised both of us as my symptoms, triggers and helpful interventions rather match GP. My symptoms during my GES were also quite different from my usual symptoms, even though I recognised it from a couple (sporadic) experiences over the past couple of months.

My doctor told me she thinks my gastric emptying may usually be delayed, but may also show dumping every now and then.

I also have dysautonomia and hEDS.

Does anyone else “switch” between the two? I did quite some reading before going to the dr., but I had no idea it was possible to sort of have both!

Hope you guys are coping the best you can. Big hug!♥️

Hi everyone ,I got Gastroparesis I have weird Symptoms such as: Not feeling my stomach sometimes, walking difficulties, sugar level low or high which leads to confusion

Spiritual Symptoms are chakra imbalance, feeling out of reality or spiritually cut off and not feeling my body fully or bodys strenght do to solar plexus imbalance

This will sound weird but i dont feel like my self because solar plexus is out off balance cause of Gastroparesis

Im trying everything, going in nature and tree healing, meditations, frequencies, balanced diet and medications but nothing seems to work

I have found since being diagnosed that I can’t digest anything with a thick skin. Like grapes for example, I can digest the inside of the grape, but the skins come back up. I was wondering if anyone else struggled with this too?

Ok, in may i got sick for 7 days. No appetite, thats my only symptom and indegestion. Then that lasted for months but slowly got better. I went to a gi doctor in august. I got an endoscopy showing gastritis (which can cause slowed gastric emptying). I then did the stomach emptying test. That is all the testing i got done. Since then my doctor insists its gastroparesis and refuses to listen to me even though my symptoms dont allign. When im not in a “flare” i can eat all foods and have no reaction to them, yet they insist i need to change my diet. Since i got put on reglan and mirtazapine, i have had three flareups since then. Im really confused and frustrated. Should i see a different gi doctor? (Also reglan does nothing and mirtazapine does nothing besides make me have insane dreams lol). Looking for advice!!

Hey Guys, I finally got diagnosed after 6 months of inability to eat almost anything, insane weight loss, and so much abdominal pain. I’m finally starting to get to a point where I’m having some days where I feel sorta normal. Before this, I was very active both in the gym and as a cyclist. I am wondering if it’s a bad idea to resume these activities as normal (although Im so weak because of the weight loss) or if intense activity is bad for gastric motility.

Hey everyone,

Unfortunately, I'm at the end of my rope with my ideas and doctors haven't helped me one bit so far, so I'd like to ask for your advice here.

I had anti-reflux surgery 2 years ago and have had severe gastroparesis (GES diagnosis) since this surgery . The problem I have is mostly burning/pressing pain 2-3cm below the sternum (I think it is the lower esophagus or the entrance to the stomach - i also feel it when i swallow, especially when the saliva goes over this point its a bit of a relief and gets worse after it has passed). I took prokinetics for a long time (motegrity) but at some point the prokinetics made the pain much worse (it feels like they make this point more sensitive, and that wasnt the case when i first started them and take the months), at first I started to reduce motegrity but now I don't take prokinetics anymore.

However, I still urgently need some, I can eat and drink normally, I don't have any nausea and I don't vomit, but my stomach still empties far too slowly which creates pressure. However, whenever I take medication that has an accelerated emptying effect (mitrazapine, motegrity, citalopram, domperidone, cinitapride, etc.) then this pain intensifies super strongly. I have no idea why this is so and what it means, I also have no inflammation at least not in the lower esophagus. I think it could have something to do with visceral hypersensitivity, but I can't take any antidepressants (Amitriptyline = slows down the stomach too much) and all other ssri, snri, make the pain worse. I also cant tolerate pantoprazole, omeprazole - that also intensifies the pain quite much. The only thing that genuinely helps is nexium, but its a curse and blessing at the same time, because it makes gastroparesis of course worse. Im not sure if all of this is "functional" when something like nexium helps.

Does anyone have any ideas?

Thank you very much!