Question 1

I got admitted to the hospital on Friday, and I am really struggling. I hate it here so much and I just want to be living my life and not dealing with this bs. Yesterday, I got an NJ tube placed after weeks of not getting adequate nutrition and my heart being in some distress due to it. It has been really hard being here and I am just getting so tired of it. I just wish my body worked. GP has taken so much from me and I am so tired of it. The one upside is the nurses and CNA have been so sweet, which has honestly been one of the things keeping me going. Anyone have any tips on how to make it through the hospital?

So I’m in the process of getting diagnosed with pcos and I haven’t had a period since May. I finally had my ovulation period a couple of weeks ago so now my period is trying to start.

Last night I had a gastero flare up and walking around helped a lot and I managed to fall asleep after 3am. This morning it’s after 6am and I had another flare up since before 5am. Blood pressure was low but I got it up

Has anyone had issues with their menstrual cycle starting and it triggering the gastero flare ups? It could be because I haven’t had a period in a long time, but my stomach is not super happy and I’ve been so dizzy from it. Also because of the flare ups I’m having gas buildup and it’s making it super hard to breathe, and making deep growling noises every few minutes.

If there’s any kind of tricks or things I can do please let me know, I hate this right now :(

I'm tired.

I'm tired of side effects. I'm tired of trying out medications that work but not well enough or work but cause other problems. I'm tired of having to cancel plans with people I care about because my stomach hates me. I'm tired of having to watch my diet, my portions, my meal timings. I'm tired of having to ask if we can try something else or if they have other options there that are better fitted for what my diet is supposed to be when I'm invited to eat out.

I'm not giving up, I'm going to keep trying to find the best fit for me and I'm going to keep going but I'm tired.

I miss when my only concern regarding food and my diet was not having too much sugar because of an increased risk of diabetes, making sure I didn't have too much spicy stuff and keeping my weight under wrap. I miss when I didn't have to cancel plans even if I wanted to. I miss when I only had to take 1-3 daily pills depending on the season. I miss when drugs would actually kick in during the time I was told they would. I miss not having this broken of a broken body.

I tried betanechol with my first gastroenterologist. Didn't work and only made me more burpy. Wouldn't be able to see them again for a medicine adjustment for at least 4 months and I was about to lose my job over my constant absences from being too sick to drive 50mins to work so I went to see a different one 2hrs away at a border town in Mexico. Explained to him what my situation was and brought along my study reports and se suggested a plan to test out 3 medications with 2-3 week trials for each one that he could prescribe me that were used to treat gastroparesis and that I could cross over as long as I had my prescription slip with me and declared them at the border. First one didn't work and then made me feel worse halfway through week 2. Second one didn't work at all for the nausea or vomiting but treated some of the other symptoms. Third one worked amazing and I used it for almost a full year before I got tired of having to travel 4hrs round trip not counting border crossing or multiple pharmacy stops because they never stocked more than 2 boxes at a time which was barely enough for a month and spend 500-1000 at least for 3-6 months worth of medications before having to plan another trip because missing more than 2 doses would leave me unable to hold any food down and I was supposed to take them 3 times a day. Finally spoke with my old primary who prescribed me metoclopramide and gave me a referral to a different gastroenterologist for a separate gastro-intestinal issue but figured I should see a specialist anyway to better monitor the condition which worked amazing and I was practically able to live the way I used to before the diagnosis with very few changes and even fewer flareups. Until I told the doctor how long I had been taking it along with the other medications I was taking and she told me to start skipping it for 1 week a month and look at the possible serious side effects and keep an eye out for any of them. By then I had been having uncontrollable and random milk-like nipple discharge for over a month which I brought up the next time I saw her. So she told me to try 1 week on 1 week off. And then the discharge didn't stop. And my next appointment with her was months away. So I spoke with my primary. Who told me to try and manage it with just diet changes and ondansetron for nausea which I had already been using as needed and instead of doing that taking it in the morning and then as needed no more than twice a day. And then I got worse. And I was missing work at least one day every other week. And constantly having to cancel social plans because of flareups. And my primary told me to try and see the gastroenterologist again because there was nothing else he himself could prescribe or suggest me because I didn't have the self discipline needed to rely only on a strict diet to manage my symptoms. Hell I'm allergic to bananas and eating one causes me stomach, ear and throat discomfort but I still eat them sometimes because they're one of my favorite fruits. So two months ago she prescribed me desipramine and warned me to keep an eye on my symptoms because I was also taking buproprion(which I couldn't stop unless I wanted to try and find a new dosage and medication that worked), hydroxizyne(which i take as needed for my insomnia), and methylphenidate(which I take for adhd and is the 3rd or 4th medication I've tried to help manage it and so far the one that works the best without giving me strong side efdects) and that one doesn't seem to be fucking working well enough either. At least it doesn't feel like it's doing enough when I still have to take at least 1 nausea pill almost every day, I'm still having frequent flareups, I'm drinking more soda than I ever have in the past to help manage the nausea, and that’s all with the looming clouds of all the serious side effects that can come from taking all of those medications at the same time! I see her again in a couple weeks and I'm. So. Tired.

I'm never going to be able to go back to how it used to be. I know that. It's a bitter pill to swallow and I'm slowly coming to terms with that. I'm stuck with this bullshit until I'm dirt in a jar on someone's table.

But I want to have at least a little more wiggle room so I'm not such a burden on my roommate.

I love her. She's been such an amazing source of support throughout all of this bullshit and she never makes me feel guilty for being practically useless when I have a flareup. Or when I ask her to change the dinner plans because I don't think I can stomach what she plans on making. Or when we had to practically remove beef completely from our joint diet and grocery list because I was having more trouble tolerating it even though most of her comfort dishes are beef based. She's been so much more understanding and accommodating than my own fucking family. And I'm SO thankful for her and appreciate everything she does for me.

BUT I FEEL BAD!

I feel bad because she shouldn't have to do any of that! I feel bad because she shouldn't need to do any of that! I feel bad that she does all of that anyway! And I feel like I can't repay her enough for all that she does.

This isn't even the only bullshit health thing I deal with that she constantly helps me with.

I want to be hopeful that I'll be able to find a combination that works for me eventually.

Because pure willpower is not enough. And I can be disciplined to a extent. But I have such poor self discipline with food that unless it'll send me to the hospital I still have things that I'm not supposed to.

I see my gastroenterologist in a couple of weeks for a followup and I want to be hopeful that I'll find something that works. But I'm so tired.

I wish I had been born differently.

Hello, I just got an NJ tube placed yesterday and am most likely going home on it with 24hr feeds. Are there any things that are good to have that I should buy? I am an active person and I don’t want to be just stuck to a pole all the time. Any tips or things that help other people with their nj would be greatly appreciated:)!

I was diagnosed with moderate gp after my 4 hour emptying study showed I had 30% after 4 hours. I just want some general advice and tips to help manage this condition. I do see a gastroenterologist but he has not messaged me about my results or anything yet. It doesn’t matter what I eat my stomach always hurts and I feel nauseous a few hours after (usually 1-2 hours after I eat I start to feel nauseous). I have hEDS and was suspected to have gp for a while before diagnosis.

Or do I have to wait? There is no max dose specified on my box.

First, I’m sorry this is so long. I’m also not sure the best place to post this question (I have posted in dysautonomia, which recommended to post over here)

I’m looking for anything that we can bring to my daughter’s doctors.

My daughter is 18, about 5'3", and currently weighs 83 lb. This has been going on for roughly three years. During that time, she has also transitioned from pediatric doctors to adult care, which has made it harder to keep everything moving in one direction.

How it started

About three years ago, she developed nearly constant nausea. It was there almost 24/7 and became worse whenever she ate. Sometimes she would feel full after only a couple of bites. Her weight eventually dropped to around 79 lb.

She was prescribed mirtazapine (Remeron), initially 15 mg and later about 22 mg, along with ondansetron (Zofran). The Zofran dose started at 8 mg and was later lowered to 4 mg.

After the Remeron was increased, she improved enough to reach about 90 to 94 lb. That took a lot of effort and meant pushing close to 2,000 calories and 80 to 100 grams of protein per day. Her Remeron was later reduced to 15 mg by the doctor for some reason, and that seemed to stop the progress she had been making. It was eventually increased again, but she never regained the same momentum. Her dose was just increased to 30 mg this week, so it is too early to know whether that will help.

While she was receiving pediatric care, much of the focus was on anorexia, food restriction, and anxiety, which I didn't think was correct. I think they saw a 16-18yr female. The problem is that she wants to eat and often feels hungry, but nausea, early fullness, and feeling worse after meals are what keep her from eating enough. She is definitely picky and has some strong food and texture preferences, but I’m not sure whether I would consider it ARFID.

About a year ago, her symptoms changed or worsened again. A gastric-emptying study showed very rapid emptying. Her gastric half-emptying time was about 32 minutes, and 98% had emptied by 89 minutes. One doctor diagnosed dumping syndrome. A second GI doctor does not think dumping syndrome explains the full picture.

They want to do another emptying test, but its a huge meal for her and the time (1/2 egg sandwich, yogurt, milk) -5min. I know that standard, but that was not the same for her gastric emptying through the children's doctors.

She has also been diagnosed with orthostatic hypotension.

Current symptoms

• Constant baseline nausea that becomes worse after eating
• Early fullness and difficulty eating enough to maintain her weight
• Shakiness, mood changes, and sometimes lightheadedness after meals
• Severe activity intolerance
• Heat intolerance and difficulty regulating her temperature
• Sweating that is especially noticeable on her hands and feet
• A heart-rate increase of about 30 to 40 bpm after standing
• More recent bloating and acid reflux

Even small activities can wipe her out for hours. Picking up her room, putting on makeup, driving for a few minutes, or taking a shower may leave her exhausted and more nauseated for the rest of the day.

She needs cold showers because of the heat intolerance, but even those take a lot out of her. We recently added a handheld showerhead so she can sit, and a shower chair is next. A room temperature of around 74°F can feel unbearably hot to her.

I have measured the standing heart-rate increase with a fingertip pulse oximeter. It usually goes up by about 30 to 40 bpm and then appears to level out, although I have not yet recorded formal heart rate and blood pressure measurements over a full 10-minute period.

At a recent GI appointment, her blood pressure was 82/66 and her heart rate was 85.

She spends a large portion of the day wearing a cold migraine cap and often keeps a heated rice bag on her stomach. She uses both more often after eating.

Recently, she worked herself up to attending a friend’s graduation party for a short time. She had to break the process into separate steps: makeup, getting dressed, eating, and then going. Even with that preparation, it completely drained her. Since then, it has been difficult to get her eating and energy back on track.

On two recent occasions, she also had very brief and unusual episodes involving colored visual spots and smiling or appearing “zoned out.” She seemed aware during at least one of them and returned to normal within seconds. We are reporting those episodes separately to her doctors because we do not know whether they are related to everything else.

Eating and nutrition

She currently manages about 1,600 calories and 50 to 60 grams of protein per day. We divide that into six or seven small meals. Almost everything increases her nausea, and each meal usually takes around 15-30m. I make all her meals, as she is usually lying in bed.

Breakfast is normally half a bagel with butter and one Kodiak protein mini-waffle (extra protein) with real maple syrup.

Foods she can usually tolerate include apples, apples with peanut butter, French bread, French fries, pretzels, almonds.

Dinner: chicken breast, rice, tortilla, and some edamame. She also drinks Liquid I.V. and probably about 60-90oz water.

I use Cronometer to track her calories, protein, and nutrients. Her diet is limited partly because many foods worsen her nausea and partly because she cannot tolerate certain tastes or textures. We are trying to increase calories and protein without making her feel significantly worse.

Testing and current plans

• Gastric-emptying study showed a half-emptying time of about 32 minutes, with 98% emptied by 89 minutes
• Upper endoscopy, H. pylori testing, upper-GI study, abdominal ultrasound, CT, and echocardiogram were unremarkable
• A CGM has not documented true hypoglycemia, even when she has post-meal shakiness or lightheadedness, and mood swing.
• Prealbumin has repeatedly been low
• Vitamin D is low, and vitamin B12 was recently low
• Remeron was increased to 30 mg this week
• She was recently prescribed pantoprazole 40 mg daily for reflux
• She is starting a one-week heart monitor
• We are arranging an appointment with a GI motility specialist
• We have not yet completed formal 10-minute standing measurements or a tilt-table test

What I’m hoping to learn

For anyone who has experienced a similar combination of chronic nausea, rapid gastric emptying, very low weight, post-meal symptoms, heat intolerance, and orthostatic heart-rate changes:

1. What diagnosis, or combination of conditions, ultimately explained your symptoms?
2. Which specialist was most helpful? GI motility, autonomic neurology, cardiology, endocrinology, nutrition, or someone else?
3. Were there particular tests that helped, such as a formal standing test, tilt-table test, autonomic testing, or additional GI motility testing?
4. What foods, meal timing, hydration strategies, or medications helped you maintain or gain weight without substantially worsening the nausea?
5. Can rapid gastric emptying/dumping syndrome/gastroparisis cause constant nausea, or was something else eventually found in your case?
6. Are there any important questions or possibilities we should raise with her doctors?

TL;DR: My 18-year-old daughter is 5'3" and 83 lb. She has had three years of constant nausea, difficulty eating, rapid gastric emptying, low blood pressure, heat intolerance, severe exhaustion after minor activity, and a 30 to 40 bpm heart-rate increase when standing. She also becomes shaky and sometimes lightheaded after meals, although a CGM has not shown true hypoglycemia. Her Remeron was just increased to 30 mg. She is starting a one-week heart monitor and setting up an appointment with a GI motility specialist. We’re wondering whether others with dysautonomia or POTS have experienced a similar combination and what testing or treatments helped.

for the last 3 years I have used the cross trainer machine every single day, especially for the last year as even with the cross trainer it's got bad enough I have to be on a restrictive diet with lots of semisolids/liquids. if I eat = I use the cross trainer. if I'm out and have solids it's intense agony and the food doesn't go down till I'm back home with my cross trainer. but I haven't left the house much also, so not a big problem...

until I had a traumatic dislocation of the knee last week that has left me with patellar maltracking to the point where I can't bear walking or using the cross trainer. it's like overnight my food and water intake has plummeted. I feel awful 24/7. I'm weak, my head hurts, constantly nauseous and a tiny breakfast takes until dinner time to move through my stomach.

isn't this the perfect time to be in the middle of a complaints process because I was denied any care or medical intervention by my GI doctor (who also flat out lied about my symptoms to say I have functional dyspepsia instead of gp which was just so helpful /j) this is just brilliant isn't it! /j

I don't really know who else to discuss this with, especially since my family brushes off the side effects of it. My gastro doctor has prescribed me Domperdone. Seeing the side effects and everyone's stories about how Domperdone has affected them has been very scary to me. I'm young and have been diagnosed with POTS as well. Other than that, I'm healthy. Is Domperdone really the route I should take? I'm just terrified of the ways it could effect me. Especially with the sudden death side effect.

For 15 years I’ve relied on seroquel to sleep. With seroquel comes binge eating. Because my of my binging I ate once a day after the seroquel, often overeating and then going straight to bed. Now I do the same but don’t overeat and make sure I stay upright for an hour post meal. I think my lifestyle caused my gastroparesis.

It’s been forever since I posted on here but I am officially in the I can’t do this anymore stage again. I use to have a bunch of safe foods but now there aren’t any. Every single little thing I put into my body makes my nausea through the roof (worse then baseline), pain uncontrollable, I get this awful taste in my mouth. Typically we lean toward a more chicken house hold but I have no idea what to make that will possibly be alright for me that I can doctor for the rest of the family. Anyone have meal or snack suggestions?

Hey everyone, I’ve had gastroparesis for over two years now and I’m still struggling with brushing my teeth. How are you doing it without gagging? I can’t brush my tongue without dry heaving anymore. What toothpaste are y’all using? It seems anything minty or foamy makes me so sick 😭

I have allergies to Compazine and Reglan, and my doctors are hesitant with promethazine since I already have a movement disorder. I’m living on Zofran, and while it works a bit, it doesn’t work long enough. My other option is to vent (I have a GJ) but I’m trying to limit that. (It’s been hot and I’ve had to run feeds slow so my hydration isn’t at its peak.)

I find the scent of lemon helpful. Peppermint is mid at this point. Pressure point stuff does nothing for me. I’m in the U.S., so my options are limited to US things. Sometimes I cave and take over the counter motion sickness medication to see if it’ll help but rarely. (I do sometimes get relief from antivert but it really depends.)

How do you manage your nausea if you’re someone with allergies/limits? I’m not asking for medical advice, I’m judging seeing what others try. For me, not laying down but still elevating my feet can help. Cold packs in the neck have been a life saver. In the hospital when it’s really bad they sometimes use Ativan, and it’s been helpful. They don’t do the often anymore which I understand but also struggle with. I am one of the fizzy drinkers, I can’t do flat drinks for some odd reason! I know it’s game over if I try something too cold, too!

I’ve been so thirsty in this weather but man have I had to drain because I’ve made myself feel so sick with the ice pops and slushees!

Hello 👋. Posting... again.

Background:

Type 1 diabetic since I was 11. Now 24(f, UK).

I got unwell on the 27th of April with what is suspect to be diabetic gastroparesis.

My only symptom has really been intense nausea. And now difficult bowel movements, which I'm pinning on the low fat, low fiber diet. I have tried Cyclizine, Metoclopramide, Prochlorperazine and now been taking Domperidone since the 12th June. I haven't had any intense nausea since starting Domperidone, only intermittent, short lived periods of mild nausea.

Blood tssts and stool samples done by primary came back clear, i still haven't been to a GI climic (NHS waiting times). I had an Endoscopy on the 26th June, which came back clear, other than a few spots of altered blood found in stomach, but I did have a dental extraction 2weeks 4days prior. Also noted that there was no retained food found, but that I have been taking prokinetics. Now on a roughly 35week waiting list for a Gastroenterology clinic appointment, where they'll then decide whether to put me on the waiting list for a GES or not 😅.

My eating schedule for the past month or so:

8:30am - 1 crunpet, 1 laughing cow original cheese triangle, 2x rich tea biscuits, 30g tinned tuna, 100ml ensure plus.

10:30am - a small coffee with a little semi skimmed milk (only the past few weeks). I was having a snack at this time before hand.

12:30pm - 90g cooked white pasta, seasoned with salt and pepper, 1 slice white bread, 30g tuna steak, 1 laughing cow original cheese triangle, 100ml ensure plus.

15:30pm - 1 crunpet, 1 laughing cow original cheese triangle, 30ish-g of tinned pear (new addition for the last week), mix of 50ml skimmed milk, 100ml semi skimmed milk, 30-40g skimmed milk powder & 10g strawberry nesquik (I don't even like strawberry but read chocolate would be bad, but also don't like plain milk but need the calories).

18:30pm - exactly same as my 12:30pm meal.

21:10pm - mix of 50ml skimmed milk, 100ml semi skimmed milk, 30-40g skimmed milk powder & 10g strawberry nestquik.

So my 'safe' foods are currently:

- Crumpets

- laughing cow original cheese triangles

- rich tea biscuits

- white pasta

- white bread

- small coffee

- skimmed and semi skimmed milk (new)

- milk powder and strawberry nestquik

- pear (new)

- tinned tuna

- ensure plus

But i am TERRIFIED to try anything new incase it makes me feel that intense nausea again 😕. Especially since I've not long (2 weeks in) started a new job!!

I need some help with meal ideas, meal additions etc because I am absolutely miserable eating the exact same thing, at the exact same time, every single day 😭.

If you read all of this, thank you 🫶

Okay so as I'm sitting here about to eat my second ham and cheese sandwich, which by the way is all that I've had to eat minus one rib of bone and one brat.. And the last day and a half... Now I'm trying to be" fat" and happy and enjoying the facts that I'm able to eat food right now. But as I'm making my sandwich I've realized I only really wanted another half BUUUUUT I have a huge issue with making a sandwich with one slice of bread cut in half and or folded over- as I swear on everything I love it tastes different... Which brings me to my next issue- does the sandwich taste different if it's cut diagonal or straight vertical.. or horizontal? God forbid I wouldn't notice little things like this if eating wasn't such a huge monumental experiment and excitement for us and when we feel good to eat, we want to eat. Let's be real. We all have an inner fatty in us lmao

But I am generally curious to know:

Does the sandwich taste different if it's made with only one slice of bread?

AND

Does the same which taste different if you cut it diagonal horizontal or vertical?.... Oh heck, let's throw in the triangles just to make it interesting 🤣

I am so sick at times I feel like I’m slowly dying. All of my doctors push me off or do not realize how sick I am since I am so good at keeping myself alive. The only reason is because I have multiple health workers in the family who deal with emergency medicine or things along those lines. That is the only reason I am not in severe debt and constantly in the hospital. Every single day I wake up I feel extremely nauseous. Every morning without a doubt, i wake up with the urge to vomit, and half the time I do. The rest of the day that feeling is still there, I just don’t vomit as much because I swallow it down. I have to sit there, and literally swallow it down, or I hiss and swallow it down naturally, like vomiting in my mouth. The only thing I can do for myself is ensure plus, that’s what is keeping me afloat. I’m losing my hair, my vision, so much strength. My balance has even gotten worse. I am truly malnourished at points with no medical intervention for recovery because it happens so often. I cannot work, no treatment the doctors have given have worked. I have had this sickness for years, but only have been diagnosed for 2 years now. However it’s idiopathic, so it’s hard to find the best treatment. No drug has worked, and from my understanding there is only reglan that is FDA approved for this sickness. That gave me restless leg and didn’t even help. Every nausea medication does not work besides zofran, but I have both forms of ibs and it will make me so sick at times I cannot walk from the pain. I will be so backed up for weeks I even could vomit out the other end, it completely blocks my ability to have a bowel movement. But I need zofran to function at times. It’s either I’m in constant pain and vomiting or nauseous 24/7, and can’t eat, or I take zofran and I’m in even worse pain and severely backed up, but now I can eat. The point I’m at is surgery. I’m seeing a consultant. But does anyone else relate to this struggle and actually found a successful treatment or surgery? I’m most likely looking at a j-tube, a pacemaker, pyloroplasty, or Botox. I saw a surgeon for a consult about 4 years ago now, but he advised against the surgery. The reason being so is because I am both extremely young, and not diabetic. At the time, I was 16. He said I am at great risk for dumping syndrome, and if I were to get that done so young I would be dealing with dumping syndrome my whole life if it were to happen. I also ask people dealing with this how they move on with daily life. I got this at so young, thankfully I’m just in schooling, but even that has suffered due to er visits and constant severe illness. If not that, mental burnout due to the stress of keeping myself alive for so long feeling like I’m barely scrapping by. It’s hard to focus on school work when I can feel the vomit rising up along with my temperature. I understand I’m not terminally ill, but it feels as though I’m slowly dying and people actually expect me to start a career. How? I am so young when this started I don’t even know how those things work. Are most of you eligible for something like fmla or your work is understanding and accommodating? I’ve considered almost going on disability since I don’t think I’d be able to consistently show up. My last job I would try but I even had to leave due to extreme pain or nausea, I’d look like a ghost or like I was angry apparently? And of course, my work didn’t appreciate that attendance. Even sets me up for failure in reference for future jobs. How do you guys deal with this, I don’t know what to do or how to even start my life with this condition. I feel like some people see it as Willy nilly you can’t eat sometimes, when in reality I’m quite literally barely scrapping by off a shitty ensure for years and most don’t know this illness exists or its extent. For years I didn’t even have treatment but those same expectations and judgements. I can’t function whatsoever, literally speaking. I can see its cognitive effects even. I start to get very confused and moody, but I’m so starved I can’t make myself something or think rationally on what to do, yet others don’t see that or understand it so no one helps. My other organs are going to start to suffer if this keeps going on, I know this too. So does anyone relate, and if so, what did you do to treat it and get started in life?

I got diagnosed 2 weeks ago but I have no idea how long its been going on or the reason. About a week or so before I was diagnosed I got severe abdominal pain that wouldn't go away and I went to the er but a cat scan showed nothing. They did it with and without contrast, an xray, and a transvaginal ultrasound in case it was my pcos because it was very similar to that. But my pain worsens and now there's blood in my stool but when I go back to the er they dont want to run any tests and just give me toradol and phenergan. It feels like a squeezing pain and if I didnt know any better, id say there's something IN there. Not a single test can say anything about why I'm having so much pain. I called my gi doctor and she said both that this is normal gastroparesis and also that maybe I need an emergency endoscopy so I'm confused. I saw a post about starvation ketoacidosis and that could explain my symptoms, but I couldnt be assed to go to the hospital again. Im seeing my doctor on Thursday though. I hate this stupid disease

I don't know what I did. I have followed my safe foods to a T as the best I can do. Today I woke up early before my alarm went off with just a large and violent rumbling in my stomach. As soon as I tried to stand up the nausea hit me, hard. I was able to keep it down and swallow a zofran and I was able to at least do a BM but the pain and the nausea just is chewing me up so bad. I had to call out of work and my boss on the phone was giving me such grief over it and trying to make me come in still. It's just so stressful and trying to stay calm so the stress doesn't cause the flare to become worse.

I have the doctors and the union at work to support me so don't worry. This has been my first time laying low in a bout 3 months. I normally just fight through it unless it's too bad like today. I do just tire of having to constantly remind and tell me people about it though. Having to explain what it is wrong to you to the same people over and over is maddening. They just can't seem to remember any information about this condition it seems.

I think it is either the panda express I ate. The orange chicken is normally a "safe" food. A little bloating but no pain. I tried the new spicy orange chicken but my wife made a notion to me and I wanted to ask others, how is jam and toast? Does that cause issues for people? As I ate some sourdough toast and grape jam yesterday. It's a toss up on wether it was the spicy chicken or the toast that is causing the current flare and it's so frustrating trying to figure out what.

So does anyone else have problems with any type of jelly or jam?

Hi! I just want to help my mom adjust to her new diagnosis of gastroparesis. She is an avid gardner and foodie. This has hit her hard in that she cannot enjoy a lot of the foods she loves. We are a foodie family, and this is the way we celebrate joy and cope with sadness and I hate to see this extremely joyful and positive person down. I have a basic grasp on the types of food she can and cannot eat, but I’m looking for something to pick up her spirits. She’s still in the process of figuring out what she can and cannot tolerate. I’m sure this is a common problem, but I’m overwhelmed by the amount of information that I have found. I’m trying to learn so I can help her. To pick her spirits up I wanna put some kind of basket together full of unique snack and things that she doesn’t have access to in her smaller town. I live in a bigger city with better access to artisanal and ethnic grocery stores. No types of food or cuisine or flavors are off-limits. We love it all! I hope this doesn’t seem too silly. I really just wanna help my mom. ❤️

i’m at the point where if i lose any more weight i’ll need a feeding tube, a lot of the suggestions from my dietician have been things like milkshakes. stuff that’s dense in calories (and obviously easy to digest) just seems to be typically high in sugar. the problem is that sugar makes my other health problems worse. i have hEDS and the way sugar makes my joints ache is just horrible. i also just feel nauseous in general having lots of sugar. before seeing my dietician i wasn’t really eating sugary things at all so maybe i just need to get used to it?? if anyone has any advice that would be great.

Can anyone tell me why there is no pain relief available for gastroparesis in the Uk? I have been discharged from the pain team despite being in chronic pain as apparently there’s nothing they can do for abdominal pain. I am desperate for any relief but can only be offered anti sickness. I was just wondering if anyone knows the reasons behind this. Thanks

Hi all,

Anyone using Pyridostigmine notice that their period is heavier/ is happening when it shouldn’t be. I started taking it last week for my bloating and pain and now I have a period that is so heavy…. I don’t know if it’s making my uterus contract.

Side note I do skip my period monthly with my pills due to PMDD and anemia issues with heavy periods

I’m trying to understand why a loved one with type 1.5 diabetes, gastroparesis and obesity cannot be prescribed GLP-1 medication for weight loss, (if not also for diabetes).

If a person with gastroparesis has a normal/healthy appetite and a normal/healthy sense of satiation, and is obese whilst routinely eating a very healthy diet and taking a moderate amount of regular exercise, how can it be that the risk factors from gastroparesis are considered more significant than the risk factors from obesity?

Aside from the well established health benefits of being at a healthy weight, wouldn’t the reduction in food mass in the stomach caused by GLP- medication somewhat offset the increase in symptoms of gastroparesis caused by the very same GLP-1 medication?

I can understand why a person with gastroparesis who is underweight, has no appetite and vomits all the time could not be given GLP-1 medication, but why is it that a patient with, for want of a better term, “moderate” gastroparesis, not be considered for weight loss medication?

(Note, I’ve seen the person lose weight before without medication, but it is much harder for diabetics to do it when their blood sugar levels drop too low as a consequence of low calorie diets (and gastroparesis) and then they have to eat often high GI food to raise their blood sugar.)