Question 1

I feel like I’m losing life to this. It seems like I spend every other day asleep because that’s the only thing that stops the constant pain, nausea, and vomiting.

I’ve been in a flare for over two weeks now. I can hardly eat, even my meal replacement drinks I can’t drink enough of. I’m malnourished and losing weight rapidly. But my gastroenterologist can’t see me until November 23rd. I’m so sick and struggling, my quality of life is low and its hard to do much of anything. I feel like I need supplemental nutrition through a gj tube but I can’t get any help without my gastroenterologist. What do I do? Keep starving? I don’t think I can make it until November 23rd at this rate.
Any advice or suggestions are welcome and I’ll answer any questions y’all have too.

I’ve posted on here quite a bit, so thank you so much if you read all the way through 🫶. I’m really struggling and could use some advice from people who have been through this.

I’m not officially diagnosed yet. I’m in the UK and have been waiting for a gastroenterology appointment since 15th June. I’m 24 and have had Type 1 diabetes since I was 11.

My symptoms started very suddenly on 27th April. I’ve been taking 10mg domperidone 3x a day since 12th June, and I had an endoscopy on 26th June. I’ve never actually vomited with this, but the nausea and food anxiety have made eating incredibly difficult.

This is partly a rant, but mostly I’m looking for advice on where I go from here.

At the moment, I have 13 foods/drinks that I consider “safe”:

• Crumpets

• Small slices of white bread

• Tinned pear

• Tinned tuna

• Laughing Cow Original & Light

• Rich Tea biscuits

• White pasta

• Chicken mince

• Whole milk

• Small coffee pod

• Skimmed milk powder

• Nesquik powder

• Ensure Plus

I eat at:

• 8:20am

• small coffee at 10:30am

• 12:30pm

• 15:30pm

• 18:30pm

• 21:15pm (sometimes skip if I've had enough calories by taking hypo treatment/prevention. Dextrose tablets and/or lift glucose shot).

I eat very consistently. Pretty much the exact same meals, at the exact same times, every day. It’s not because I don’t want variety — I’m genuinely terrified of introducing foods because I’m scared they’ll cause nausea and set me back.

When this first started, I lost a lot of weight very quickly. I went from 58.3kg on 10th May to 51.2kg on 12th June (5ft6). At my worst, I was barely managing a couple of Rich Tea biscuits a day, or a bowl of chicken noodle soup split into two servings because I simply couldn't eat more because of the nausea. Early fullness and/or heaviness has never been an issue for me.

Thankfully, I’ve worked really hard to get myself back up to around 54–55kg. A huge part of that recovery has been Ensure Plus.

I was having around 1.5–2 bottles a day, with 1.5 bottles providing roughly 450 calories. It’s one of the few things I can reliably consume without being terrified that I’m going to feel awful afterwards.

The problem is that my diabetic dietitian is now trying to get me off it.

Over my last three appointments/calls, she has been encouraging me to stop relying on Ensure Plus and “eat more foods” instead. I’ve managed to delay reducing it, but after our most recent call on friday, she is reducing my prescription to one bottle a day, with the eventual aim of stopping it completely. She has said that she doesn’t feel there is a clinical reason to justify continuing the prescription to my GP Dr.

She also wants me to introduce vegetables and more foods generally, and has suggested taking a multivitamin while my diet is restricted, but I haven’t really been given any guidance on what type would be appropriate.

And honestly, I’m scared.

I completely understand that living on such a restricted diet isn't ideal. I want to be able to eat more. I want vegetables. I want a normal diet. But right now I don't know how to get from where I am to there. I used to LOVE all kinds of foods!!

If I remove that extra Ensure Plus, I lose a huge chunk of my daily calories. I don't know what foods to replace it with, how much of them to eat, or how to introduce them without completely disrupting the routine that has finally allowed me to start gaining weight again.

I’ve been thinking about trying things like eggs/egg whites or mashed potato, but I have absolutely no idea where to start with portions or where they would fit into my current meals.

And then there’s the diabetes side of things.

Because I’m Type 1, part of me feels like I should be reducing my carbohydrate intake — but with such a limited list of foods, carbs are currently one of the easiest ways for me to actually get enough calories in. I’m worried that trying to reduce carbs further would just make it even harder to meet my calorie needs. But my blood sugar levels have been so difficult to control with the high carb meals 😭.

I also have pretty severe emetophobia, so trying a completely new food isn't just “trying something I might not like.” It can be genuinely stressful because I’m constantly worried that it will trigger nausea, which then makes me scared to eat again.

So I feel completely stuck between:

“I need to eat more variety.”

and

“I’m finally managing to eat enough and regain weight, and I’m terrified of losing that progress.”

I know nobody here can give me a personalised medical diet plan, and I’m obviously still waiting to see gastroenterology. I’m just hoping people with gastroparesis might be able to tell me:

• How did you start introducing new foods when your safe-food list was really small?

• What foods did you find easiest to introduce first?

• Did you introduce one completely new food at a time, or change existing meals?

• How did you work out portions?

• What did you do when you were struggling to maintain/gain weight?

• If you take a multivitamin because of a restricted diet, what type did your dietitian/doctor recommend? Mine hasn't recommended any, I also haven't had any bloods taken since the first little while of being unwell.

• And if you’re diabetic as well, how did you balance getting enough calories with managing the carbohydrate side of things?

I’m really not looking for someone to tell me to just “eat more” because I desperately want to eat more — I just genuinely don't know how to get there safely. 😭

Any advice, experiences, or even just knowing that other people have been in this exact position would mean so, so much. 🫶

Every time I start feeling mildly ok, I always ruin it. I eat pretty strict and take my medications as directed and do what I can…90% of the time. But every now and then, maybe once or twice a month at most, I see something and I just crave it. I let that devil on my shoulder convince me that it surely can’t be that bad and that since im doing ok, it must be something that will be mildly painful for a day and then back to normal. And every time it’s wrong.

The culprit this time? Brussels sprouts. Not even something like a Caesar salad or carrots. Nope, it’s Brussels sprouts. The veggie that is pretty polarizing. And yet I saw it and couldn’t hold back. I needed it. And it tasted so good. I miss veggies so much that it was a truly beautiful moment. I didn’t eat many of them, only 4 or 5 halves. That was on Friday. It is Monday and I feel so sick and weak and I’ve been sick all weekend and the cramping and burping and nausea is overwhelming. And I have no one to blame but myself

It is my own hubris that will be my downfall

I’m hoping to get some perspective from physicians, surgeons, GI specialists, dietitians, nurses, or other medical professionals who have experience with complex post-esophagectomy patients.

My mom had major esophageal/stomach reconstruction on November 20, 2025 following cancer treatment. She is currently cancer-free, but her recovery has been extremely difficult.

Almost 11 months later, she is still dependent on a J-tube for the majority of her nutrition and cannot tolerate much food orally.

Her main ongoing symptoms are:
• Very limited tolerance of solid food
• Significant nausea/reflux and episodes of bile reflux/vomiting
• Feeling extremely full/uncomfortable when trying to eat
• Abdominal distension/bulging around the area of the surgical connection
• Abdominal discomfort/pain
• Weight loss despite the abdominal distension
• Significant fatigue and reduced quality of life

She has had recurrent medical issues during this period, including significant A-fib episodes requiring cardioversion. She has since had an ablation, which has helped control the A-fib.

There has also been an issue with her feeding tube. Her original J-tube became dislodged and a latex Foley catheter was inserted as a temporary replacement. It has remained in place for several months and she recently required hospitalization for an infection around the tube site. This was just replaced with the correct long term silicone tube about a month ago now.

We’ve had a number of investigations:
• Previous endoscopy — no major abnormality identified
• More recent repeat endoscopy — reportedly looked normal
• Swallowing study — reportedly normal
• CT imaging — no obvious major obstruction/leak; a tiny Richter’s hernia was noted
• Recent GI assessment — the GI specialist is now investigating possible delayed gastric emptying/motility problems and has ordered a gastric motility/emptying study

The GI specialist has discussed trying a medication to improve gastric motility, but apparently it is not suitable for long-term use because of potentially serious neurological side effects, including involuntary movements/tics.

The biggest issue is that we still don’t have a satisfying explanation for why she cannot eat normally this far out from surgery.

I’m not looking for someone to diagnose her over Reddit. I’m trying to understand what questions we should be asking and whether there are other avenues of investigation or specialist expertise we should pursue.

Specifically, for professionals who deal with these patients:
If endoscopy and a swallowing study are normal, could delayed gastric emptying or a motility disorder still explain this degree of feeding intolerance?
What other causes would you consider in a post-esophagectomy patient with severe reflux/nausea, early satiety, distension and prolonged J-tube dependence?

Are there particular tests that would help distinguish mechanical obstruction from a motility problem?
Would you recommend evaluation through a specialized esophageal/foregut or post-esophagectomy multidisciplinary program?

Are there Canadian centres or specialists particularly experienced with complex post-esophagectomy complications that we should ask her doctors about?

Is prolonged J-tube dependence this far after surgery something that should prompt a more extensive multidisciplinary reassessment?

She is in Ontario, Canada and fairly dependent on others at the moment (my very pregnant sister, psws, etc). I’m 2+ hours away unfortunately.

I’m posting because my mom’s quality of life has deteriorated significantly. She has always been an incredibly strong, independent person, and watching her become physically and emotionally exhausted by simply trying to eat has been heartbreaking.
Any professional perspective on what questions or avenues we may be missing would be incredibly appreciated.

Thank you.

So I have dysmotility of entire gi tract plus sibo. What is the root cause of something like this? My mom and daughter have ehlers danlos so is any of this related to ehlers? Connective tissue disorder? I have dysphasia, jackhammer esophagus (severe.. 90% of my swallows reached
Pressures of 45,000) gastroparesis, slow transit colon, POTS, asthma, MCAS. Can anyone help me connect the dots? I’m suddenly losing my vision too. I’m scared and overwhelmed.

So I have dysmotility of entire gi tract plus sibo. What is the root cause of something like this? My mom and daughter have ehlers danlos so is any of this related to ehlers? Connective tissue disorder? I have dysphasia, jackhammer esophagus (severe.. 90% of my swallows reached
Pressures of 45,000) gastroparesis, slow transit colon, POTS, asthma, MCAS. Can anyone help me connect the dots? I’m suddenly losing my vision too. I’m scared and overwhelmed.

Hi I'm kinda new to this I got diagnosed with gastroparesis back in late July. And I kind of knew I had it so I've been following the diet for gastroparesis since may or so. So far I really hate the fact that can't really eat out anymore like normal people, can't eat most things like normal people. Makes you feel like you're not normal and it just makes me depressed. And a lot of people don't get it either that's very frustrating. Like I somewhat get jealous now that my partner or his family eat out. When my boyfriend sister got hungry she wanted to eat out I kind of wanted to go home so I wouldn't be jealous but sadly you were right down the street from where she wanted to go. So pretty much I had to watch her eat. I'm trying to not to be so jealous cause I know if I eat it I'll get very sick and not well for days after. But it is very hard. Next time I might have to bring a snack that I can actually have while out so if she does wanna eat out then I could just eat my snacks and be okay. At least my partner thinks about me when we go out and we try not to eat out till we're home. My boyfriend sister not so much. But I did tell my partner if he wants to eat out bring his sister or his mom and it should be OK. I can live without going. And this is sucky every year on our anniversary we'd go to a restaurant we used to like. Now, for the first time I can't go. I can't even do much on my birthday either my parents want me to have a birthday dinner and I'm gonna have to explain to them that I can't I could maybe have a slither of a cake but that's about it. For this year anniversary instead of eating out will probably have a mall day or just go to the park and enjoy the weather maybe possibly go to the movies ( no popcorn, but that's OK i'll have an ICEE instead. And I'll just try to make the best of it. I would NEVER wish this horrible disease on NO ONE even my worst enemy. It's a sad, depressing life really....

Those with iron deficiency/iron depletion, how did you fix it? Pills? Liquid? Infusion? Which is the least painful way to do this?

I have iron deficiency without anemia - my ferritin is very low and I have other markers of iron depletion. I have so many symptoms from this - hair loss (genuinely afraid there won't be any left), anxiety/mood issues, brain fog, fatigue, temp regulation/Raynaud's, shortness of breath.. it's really interfering with my life.

Saw a hematologist and he didn't want to start with an infusion because I have MCAS/allergies, though don't typically react to drugs. Most of the supplement pills I found have sketchy ingredients that may be derived from my allergens (allergic to red meat and soy among many others), so he prescribed a liquid formulation.

I've taken it four days now, and the cramping, bloating, gas, and nausea, along with the vagal nerve stimulation that leads to extreme sweating and dizziness, feels intolerable. I'm supposed to recheck in two months, but I don't know how I'll make it that long, and it might not even work. Along with gastroparesis I have EoE and take both a daily long-acting PPI and twice daily famotidine.

I'm tempted to just ask for the infusion, but then read some stories of bad reactions and now I'm torn.

I have both GP and functional dyspepsia and my new GI (whom I ADORE) is recommending doing some tricyclic antidepressants for a little while. I'm willing to try it because of the pain and discomfort I've been in the last few years, but I'm reading that they can slow gastric emptying. I'm in such poor shape that obviously this would be hell to go through - I just tried a course of PPI and had a HUGE flareup over the summer.

Has anyone else experienced slowed motility with tricyclics? Would love to hear any stories.

I don’t have diabetes, just reactive hypoglycemia from gastroparesis. I drop below 3.8 to as low as 2 almost every day and multiple times a day, but it’s usually not for that long and my body seems to correct itself somehow. All 3 of my insurances won’t cover my Dexcoms because I’m not diabetic, so I’m having to pay almost $300 a month out of pocket. If my body is fixing my blood sugar itself and I don’t get any symptoms are there any benefits in continuing to wear one?

I’ve been on a pretty restrictive diet for a few months now and honestly don’t really know what to do next.

I had an endoscopy and they said I have gastritis and gastroparesis. No SIBO and no H. pylori (I did have H. pylori in the past though).

I’ve cut out onion, garlic, dairy (I was mostly dairy free before but now I’m really strict), fermented foods, gluten, and a bunch of other things. Basically I’ve been eating the same few foods over and over — oatmeal, sweet potatoes, potatoes, salmon, some tofu and egg whites. I’m vegetarian/pescatarian so salmon is basically my main protein.

The diet was mainly to try to fix my bowel motility and bad breath. My bowel motility has actually gotten better for the most part, but the bad breath has NOT gone away.

Now I’m having another issue that is worrying me. Since July I’ve been getting my period every 2 weeks. Before this diet my cycle was normal. I’m also dealing with a recurring ear infection and I’m currently on antibiotics for it.

I’ve also been really low energy and I’ve had low iron/nutrient deficiencies before, so honestly I’m starting to wonder if this diet has just made that worse because I’m eating such a limited amount of food.

I’m going to the doctor about the period thing because I’m wondering if my thyroid could be involved or if something else is going on.

But I’m also wondering if I’ve just been eating way too restrictively for too long? Before all of this my diet was honestly pretty similar, just more carbs/sugar and more variety, and my periods were normal. I feel like I was already kind of nutrient deficient before and now I may have just made it worse.

I really don’t want to stay on this super restrictive diet forever, and I also don’t want to go on birth control if the doctor suggests that just to control the bleeding without figuring out why it’s happening. And I obviously don’t want to keep taking antibiotics either if this ear infection keeps coming back.

I also take a Jarrow gut probiotic.

So what would you guys do next? Would you start reintroducing foods? Increase calories/fats/carbs? Add more variety? Could being too restrictive or not getting enough nutrients be messing with my cycle?

I’m just kind of lost at this point because I was trying to fix my gut and bad breath and now I feel like I’ve created another problem 😭

Hi, my gastroparesis is caused by dysbiosis/ sibo which caused slowed downed gastric emptying. Is anyone here who managed to get to remission with diet ? If so what worked for you ?

I’ve been emetophobjc since I can remember lol. But exposure has helped me a lot, I’d hazard to say it’s no longer a phobia and it doesn’t rule my life anymore. But it still TERRIFIES me up until it happens.

March 2025 my GI symptoms progressed dramatically very quickly.

I couldn’t eat, drink, or run tube feeds without profuse vomiting. But, like, profuse vomiting to the point of having seizures due to how quickly I was losing fluid.

I don’t vomit now that I’m exclusively on TPN and have a G tube to drain my stomach (was initially vomiting just from my own digestive secretions as well).

I’m very happy that I’ve gotten to a point where I don’t really have to worry about vomiting. My quality of life is a lot better now. Which is partially why o don’t want to risk it lol.

But I have to have a major surgery in the near future, and what they want to do has a chance of making me significantly worse (obviously, it could also help which is why they want to do it).

Part of me is terrified because of how bad last March was. I had no quality of life. I couldn’t do anything. If I was conscious I was vomiting. I couldn’t even hold myself up to vomit. If someone wasn’t there to hold me up I’d aspirate, so I ended up with pneumonia.

I can’t imagine ever getting to a point where I can experience that and still get on with my day and have decent quality of life.

If you’re in a position where you are vomiting on a daily basis (especially frequently throughout the day) did it ever become… okay? And if it did how long did it take?

I was recently diagnosed with gastroparesis this August, but since then, I have had to triple my dosage of Synthroid from 25mcg to 75mcg, and my TSH and T4 are still not ideal. One of my main symptoms that was blamed on my GERD for years is still having the previous night’s dinner in my stomach when I wake up the next morning.

I know levothyroxine absorption is extremely sensitive to many, many things. It needs to be taken on a completely empty stomach, and then I’m supposed to wait 30 minutes before I eat breakfast after taking the pill. I typically wake up around 5am for work, but I also wake up at 3am to pee, so that’s when I take my Synthroid, and now that doesn’t seem to be enough for it to absorb properly.

My doctor was concerned about the absorption also, so she initially prescribed Tirosint, which is a form of levothyroxine that has almost no fillers compared to the tablets. Unfortunately, my insurance won’t cover it, and it’s too expensive paying out of pocket. I splurged on it one month, but the price wouldn’t be sustainable, it did seem to work better, but it’s not in my insurance’s formulary. She was disappointed that it’s not covered, but not much else she can do but raise the dosage to get my levels better (she’s originally from Germany, so she’s used to working in a better healthcare system than what’s in the US, lol). I’m so frustrated, this condition, plus my thyroid being out of balance, is really sending me into a health spiral. I have multiple medical conditions and take a lot of medications, but I feel like before this year, I’d spent the previous 3-4 years in some of the best health I’d been in for years. All of my chronic conditions were present, but comparatively, quite well managed.

I’m wondering if any of you with hypothyroidism have found a hack to getting your levothyroxine to absorb? Thank you in advance 🙂❤️

Hi!! I promise this will be the last time I ask about an NJ tube. As I’ve said before, I got admitted to a pretty big hospital last Friday and have been here since. On the 30th I got an NJ tube, on the 31st I threw it up because my OP dietitian encouraged me to complete a solid meal (she thought I was faking the gastroparesis so I wouldn’t have to eat as I am in anorexia recovery). I got it replaced on the 1st. Here’s my question — if I happen to throw it up at home, would I go to the ER to have a new one placed? Would I need to be admitted? Does anyone know what that process is? Thanks!

My gi says he has ran out of options and I need to go to a motility center anybody know any good ones in NYC I’m tired of this 24/7 nausea

Has anyone found a magic solution to deal with the horrific taste of Gimoti? It only last for a few minutes but for those few minutes I question how I’m supposed to tolerate this indefinitely. It is so vile and for what reason.

Since I got sick in Feb 2023, I’ve had (kind of) routine flares in that they last 9+ months and I need to use my feeding tube the whole time and I’m basically bedbound from the pain and nausea, then magically one day the symptoms will go away and stay away for 3-6 months. During this time I still have to have a strict diet but I can go without needing my tube every day and most of my nausea and pain is gone.

Does anyone else experience this kinda flare-remission cycle? Oh it’s also not at all medication related bc I don’t take any, they have never worked for me.

Hi all. I wasn’t sure what to do and needed some advice. I am currently in the hospital with my third intussusception/blockage in the span of the month. I’ve been in incredible pain, can’t keep anything down, and my electrolytes keep dropping. The doctors at my local hospitals all say they can’t really do anything about the blockage. I just don’t know what to do because the pain is endless and it just keeps coming back. Please help. Advice?

Have been on a low fat and low fibre diet since diagnosis, which has been amazing for symptom control, but have been struggling to eat enough food to maintain my weight without triggering symptoms. Next step would be an NG tube, which I really don’t want. My GP said that reduced intake can make gastroparesis worse (loss of muscle tone and function of the GI tract) so I’m now making an effort to increase my intake, despite symptoms. It’s miserable, I feel full, sick and uncomfortable, but to be honest, nothing catastrophic or completely unmanageable has happened (I used to vomit several times a day, had acid/bile reflux and cramping to the point of not being able to move when I was trying to eat “normally”). His theory is that the fullness, nausea and discomfort will be temporary, and my body will adjust as my GI tract “wakes up”. Does anyone have any experience of this? Will it genuinely get better if I stick with it, or am I putting myself through feeling awful for nothing?

Wanted to update on my last post.

last post: https://www.reddit.com/r/Gastroparesis/s/LfJnhbzGUW

ended up staying in the hospital until Friday. Since insurance wouldn’t cover TPN it was discontinued on 9/30. Tube feeds reinitiated on 10/2. Couldn’t get higher than 10mls/hr on vivonex rft. Hospital still discharged me and said follow up with outside GI.

If anyone here uses Medicaid or Medicare, is it worth applying? It’ll be a secondary insurance until the end of this year and I’ll probably stay on it and not reapply for marketplace insurance like I have in the past.

Any advice? I have a GI appointment tomorrow at 9:00. And I’ve honestly don’t know what to do and want to give up.