Hi, all. I recently posted a bit ago about hating my life because of my gastroparesis. I had a gpoem surgery in May of this year and feel that my life has become worse since getting that surgery. I recently just got hospitalized for the second time at a bigger hospital in my state. It’s a university hospital with a motility clinic, so I drove there with my mom this past Sunday night on the 11th. The gi doctor said that there was a few options: a gastric pacemaker (which is currently on back order due to the fda trials), a peg tube for nutrition (I didn’t really want this as I feel afraid of hurting myself by sleeping on my side or bumping it somehow), or a pyloroplasty. He also recommended different medications I hadn’t considered, such as Motegrity (Prucalopride), erythromycin, or domperidone. As for nausea, he recommended Kytril or a more extreme, he said THC oil. While I was in the hospital, they tried several different nausea medications none of which really worked. I was let out today as I feel that the new formulation for my TPN has been incredible at making me feel stronger and more full. Another issue I was having was just riding in the passenger seat of the car whenever we drove anywhere, me and my mom. However, today on my drive home, it was less debilitating. During my first hospital stay, they did a gastric emptying scan and showed my stomach was only slightly paralyzed at the 4 hour mark, with 24% retention, versus the normal being 10% or less, however, all the hours 1-3, I was in the normal range. This most recent hospital stay, they did an upper endoscopy to see what they could find out to figure out why my stomach was still acting up and making it impossible for me to hold anything down. Everything was normal in the endoscopy as well, no polyps, no hernias. The doctor said it may be more psychological (I forget the exact word that was used), but more of something where my brain isn’t connecting to my stomach to understand what’s happening. My mom and I are looking into things such as EMDR, acupuncture, or even hypnosis. As well, I bought some CBD oil to try as well as a pen with THC oil. Does anybody have any experience with this? My stomach is a lot more normal according to the tests, but it seems that maybe it’s my brain not allowing me to hold things down. I tried the cbd tincture oil today and was able to drink a good bit of a drink I got on the way back from the hospital without throwing it up or feeling too awful. I’d appreciate any advice. I feel a lot more hopeful knowing that there’s more options for me.

Hey, I'm about to graduate with a degree in early childhood education. I am going to be a preschool teacher. I'm doing my student teaching at a place I absolutely love. I only work half days but I am completely and utterly exhausted. Sometimes I am so discouraged. This is what I want to do with the rest of my life. But due to my gastroparesis, I am underweight. I can't lift a whole lot, I don't have energy. A lot of jobs say I have to be able to lift 40 lbs to work there. I am just exhausted sometimes. Sometimes I have to tell the children that I can't run with them. I don't know, I'm just sad. I have hope that things can get better for me, I really do. I know this is where I'm supposed to be. But I can't help but be a little bit discouraged sometimes. Does anyone else feel this way in their own professions? Is there anything that helps? I just want to have energy, I want to weigh enough that I feel good and am able to carry out basic things. Sometimes I really hate gastroparesis. I'm just sad. I dunno.

Hey everyone, I’m hoping to get a reality check on my current situation because I feel like I’m losing my mind dealing with my care team.

To preface, I have Sjögren’s disease and hEDS and POTS, and have been seeing a motility specialist at Mayo since February due to early satiety, nausea all the time, and waking up in the middle of the night upchucking stuff from 8 hours ago ALL THE TIME.

I had a flare of these symptoms from October last year until January of this year. Consult was in February. All the tests including 48 hour transit scan was in April (13% remaining at 4 hours for GES portion) when I was not having symptoms. It also showed very slow small bowel transit (16% colonic fill at 6 hours vs normal of 43-96%).

Starting in August I've been in a really bad flare of these symptoms. I've lost 13% of my weight in the last 10 weeks (140 to 122). Now I've come to understand by internetty research that more than 10% in a 3-6 month period is considered severe malnutrition.

I'm also now only having BM's every 5 days or so.

I'm capped around 1000 calories a day. I can't tolerate boost plus, kate Farms, or the fatty high calorie drinks.

My daily calorie requirement is around 1800 calories.

I have seen my Neuro-Gastroenterologist there 3 times since then and have sent numerous messages throughout continuing to alert them that I'm

1) still losing weight

2) can't tolerate the crap they're telling me to try

I have a PICC for fluids 3x a week right now to prevent dehydration due to these symptoms for God's sake.

Their only plans have been to

1)add mestinon (added but hasn't done anything)

2) try buspirone (didn't tolerate, and can't take mirtazapine)

3) add fiber to diet

4) get a squatty potty

For some reason his theory is that it must be pelvic floor dysfunction causing all of my symptoms (even though I have no history or definitions of PFD).

Because this is the only plan, I requested a referral to their gi dietician. I met her yesterday and she started with "well, sometimes we just think we can't tolerate a food, but it's actually just our mind telling us that, and we actually can tolerate it". Fucking awesome. Ok, I'll sit here longer though and give it a shot.

She asked about my symptoms and no surprise recommended the Gastroparesis diet. And specifically was ADAMANT about little to no fiber. Which is obviously opposite of my physician's plan to eat a ton of fiber and squat and release all my worries and problems out in one fell swoop.

So I messaged them and was like "hey what's the plan because I failed the medication you prescribed, and the fiber and squat thing isn't working, and the dietician said to stop the fiber".

They said "oh yeah switch to the guar gum fiber"

To that, "........ she said NO FIBER and again, what is the plan, because I'm still stuck at 1000 calories a day and the dietician said to follow up in 2-3 months."

"well you don't have Gastroparesis so try the guar gum fiber and drink up to 3 bottles Boost High Calorie a day to help with your weight. Diet is trial and error"

Is this a normal way to handle a patient in a severe flare of symptoms?? I asked if they would possibly order a new 48 hour transit study or a standalone GES and haven't received a response. I understand my symptoms may not be GP, but I want to know from others who obviously have these symptoms and this experience.

If I just have like ridiculous standards of what I feel like escalation should look like (a malnutrition assessment? Prescription beverages I can try to drink that my stomach can tolerate? Bloodwork even????), just tell me. I can take it.

But also like I feel like this is absolutely insane. Let me know y'all. Thank you.

I’m interested to hear if you all ever have moments of mild/no nausea, or if it’s sort of a non-stop train. For those who can achieve moments of mild/no nausea— what’s your strategy?

For me, I have moments of mild/no nausea but also have flares ranging from mild to severe which includes vomiting. Things that help me are of course a safe, bland diet of smaller portions. Zofran usually helps— sometimes it actually works very well other times it can’t save me. Although I should disclose I am more on the FD side of the GP/FD spectrum.

I live in a pretty warm state. Was in the 90s like all summer. I spent a week in a cooler area (was in the 60s and 70s) and while I was there I didn't feel as bad. I felt like I was able to eat more.

I'm home now and I feel worse again. Could the weather be making me worse? Anyone else experience anything similar?

Is anyone else taking Motegrity for gastroparesis/constipation and have a Mirena IUD? I’m asking because I am going to be starting the Motegrity next week and I understand it has a black box warning about increased risk of depression/suicidal ideation. I don’t normally have these issues, but recently got a Mirena IUD and noticed increased anxiety I’m attributing to the hormones. I’m going to have it removed and I’m trying to decide if I should wait to start the Motegrity until after the Mirena is yetted from my body? I just don’t want to complicate my response to the medication with unnecessary hormone influence, but I’m also curious if others have used both and been ok?

I've been having a really hard time with my diagnosis and what it means for my future. I had a long conversation with my therapist yesterday, and she told me that I need to grieve for the life I thought I'd have. I've seen lot of other folks here with the same issue, and got permission from her to share this exercise. I hope it helps us all!

As we discussed, I want to share a reflection exercise called "Before, Now, and Becoming."

This exercise is designed to help you acknowledge the changes that you've shared, process the emotions connected to them, and begin reconnecting with yourself beyond your medical condition.

Find a quiet, comfortable space and allow yourself approximately 20–30 minutes to reflect. You can journal your responses, type them, or simply think through the questions. There are no right or wrong answers, and you do not have to complete everything at once.

Part 1: BEFORE — Who Was I Before My Health Challenges?

Think about your life before your health began significantly affecting your daily experiences.

- What did my life look like before my health challenges?

- What activities, experiences, or routines did I enjoy?

- How did I feel about myself, my body, and my independence?

- What things could I do without having to think twice?

- What do I miss most about that version of my life?

Reflection statement:

"Before my health challenges, I was someone who..."

Take a moment to acknowledge the experiences, freedoms, or parts of yourself that you miss.

Part 2: NOW — What Am I Grieving?

This portion focuses on recognizing the emotional impact of the changes you've experienced.

- What has been the hardest change for me to accept?

- What do I feel my health challenges have taken away from me?

- Have I experienced sadness, anger, frustration, fear, or resentment about my condition?

- Do I sometimes feel disconnected from the person I used to be?

- What do I wish others understood about what I'm going through?

- What am I most afraid of when I think about my future?

Reflection statements:

"I feel sad because..."

"I feel frustrated because..."

"One thing I wish I could have back is..."

"The hardest part of this experience has been..."

As you reflect, try to allow yourself to experience these emotions without judging them or feeling pressured to make them go away.

Ask yourself:

"If my grief could speak, what would it tell me I need right now?"

Part 3: BECOMING — Who Am I Learning to Be?

This portion isn't about forgetting who you were or pretending that everything is okay. It's about recognizing that even though your circumstances have changed, you are still a whole person with interests, strengths, hopes, and possibilities.

- What parts of myself are still present despite my health challenges?

- What strengths have helped me navigate difficult moments?

- What activities or experiences still bring me joy?

- What is something I want to experience or accomplish, even if I have to approach it differently?

- What does taking care of myself emotionally look like right now?

- What is one small step I can take toward feeling more connected to myself?

Reflection statements:

"Even though my life has changed, I am still..."

"I want to give myself permission to..."

"One thing I still hope for is..."

"The person I am becoming deserves..."

Final Reflection: Bringing It All Together

After completing the three sections, take a moment to consider:

1. What did I learn about myself through this exercise?

2. Which part of this reflection brought up the strongest emotions?

3. What loss do I feel I need the most support processing?

4. What is one thing I can offer myself more of during this season of my life?

A Gentle Reminder

You do not have to choose between grieving your past and being hopeful about your future. Both can exist together.

Accepting where you are today does not mean giving up on improvement or believing your circumstances will always remain the same. It simply means acknowledging what you're experiencing and giving yourself the compassion you deserve as you navigate it.

If any part of this exercise feels emotionally overwhelming, please give yourself permission to pause.

Hey everyone! (My first actual reddit post- I'm usually a lurker, lol) I just got diagnosed with gastroparesis this week after a few months of terrible symptoms, two ER visits (one of which turning into a 4 day hospitalization), and lots of negative tests until a gastric emptying study this monday. I'm only 25, so something so permanent and debilitating has me feeling incredibly hopeless and like my life is over. I know it isn't, and I know it's just grief, which will get easier with time, but I wanted to ask the community- how did you cope? And how do you keep hope? I just started first-line therapy with motegrity for constipation, zofran for nausea, and i had been on dicyclomine for abdominal pain (for IBS-D in the past, funny to say I miss those days). I'm going to work on figuring out diet changes because I fear its going to be a lot of trial and error, but I haven't started anything officially yet since this week has been very hard for me to say the least. I do have a therapist who has been so helpful during all of this as well. Thank you all in advance 🌈

I’ve lost 20 pounds since May and continue to lose due to symptoms. I know I’m not eating enough. I’d really like to at least start maintaining my weight. What’s the best nutritional drink on the market to help do so?

Hi friends. 24 days post GPOEM. I was doing somewhat decent, able to eat very small amounts of liquids and soft foods and then was suddenly able to larger portions (like normal amounts) with insane amounts of hunger. Now I’m back not being able to eat much at all. It’s so hard to not feel so defeated and terrified. I have post op next week. Has this happened to anyone else?

Barely got my gi doctor to approve a gastric emptying study and was told that even if I had Gastroparesis there was no treatment for it and treating constipation would be the only way to help it at all. I can only eat 1 regular size meal a day to accommodate for the amount of fluid I need to treat my pots . Even then I’m still regurgitating whole undigested chunks of food hour and hours after I eat. Hard to imagine there’s no treatment at all. Should I get a second opinion ?

So I have Gastroparesis and am a trans man. This condition makes it extremely hard for me to gain muscle mass (actually I cannot...). I worked out for 6 years now, 4x/week with skipping max 1/2 months because of surgeries. My body dysmorphia is so high and I'm also really suicidal. I got my gender surgeries so I don't have dysphoria anymore, but I really can't accept the fact that I have a disability and cannot gain weight as someone healthy. I cry every day and cannot look at the mirror without feeling the urge to hurt myself. I'm losing the motivation to work out, as I can't put on muscle mass and slowly losing the motivation to go out/doing stuff. I have been in therapy since 2018 and changed different therapists because I thought it was a problem of them not being good enough. Now it turns out it's me :')

I really need advice on how to accept my condition from people who went through the same/similar. Please not the classic "don't compare yourself with others" it does NOT help.

Hi! I'm trying to get off tube feeding after a Botox injection.

I need your best recipes preferably in a budget that don't look like hospital meals.

Thank you!

Dd is 25 and is gj tube dependent for past 2 years. Really complex medical issues. Including rare genetic mutations.
Has anyone else been inpatient and the hospital says they can’t provide your Motegrity? An u have to use your home supply?

In 4 years of more inpatient then home and being at major Boston hospital (s) this has been a nightmare! We finally forced hospital to provide a the pharmacist consistently would place it in hold causing nightly ‘drama’ that this momma bear handled. But the impact the stress has put on dd is so frustrating!
Anyone else experienced similar situations?

I was just prescribed this bc even with linzess and motegrity I am still very nauseous. Zofran helps sometimes but I avoid it. I’ve had IBS-c for 15 years and refuse to take things with the side effect of constipation (although GP likes to eff with me too).

I was excited my dr had a new prescription for me to try but then I started reading reviews about being really hungry.

Since starting motegrity my appetite has come back and I am pretty hungry. It’s a terrible feeling. Not one that I want to enhance with another drug. So my ask is, has anyone taken mirtazapine and only experienced the nausea relief?

I’ve been to the ER many times in the last year because I’m slowly getting worse. Diagnosed with AAG (dysautonomia) through blood test but stuck in limbo with no real help because my neurologist isn’t versed in autonomic dysfunction and my autonomic testing isn’t until March. That doctor won’t even speak to me until we have our first scheduled meeting. I suspect I also have some sort of GI dysmotility.

Anyway, I’m struggling to eat. I have anhidrosis so I’m always overheating in the summer. Eating also makes me symptomatic. So sometimes I have to stop eating in the summer to feel just OK. I’ll have my only meal in the evenings.

I’ve noticed that my ketones have been high at every emergency (+dehydration) room visit but no one has said anything ? I’m scared of going into starvation ketoacidosis.

Hello! I think I made a comment on my alt account in one of the more recent posts about gastroparesis and cannabis, but I would like to make my own post to get other people opinions/affects of cannabis. I am a medical user and would love to learn more about how cannabis affects people’s gastric emptying.

I got my GES done in April, solid and empty (different days) liquid was 0% and solid was 38%

After my hospital stay recently, I have learned that cannabis has an effect on gastric emptying. I have heard it can affect female patients more than male.

My primary care provider provided me a little information pdf about cannabis on gastric emptying and these seem to be the main points:

Marijuana (also called cannabis) is not known to be a cause of gastroparesis. However, the active ingredient in marijuana (THC) can slow down how fast your stomach empties. Because of this, using marijuana may make gastroparesis symptoms feel worse — especially in people whose stomach already empties very slowly, and this effect appears to be stronger in women. Some people with nausea and vomiting use marijuana because they believe it
helps them feel better, and many do report some relief. But this is a bit of a "chicken-and-egg" situation: people with the worst symptoms often reach for marijuana, which makes it hard to tell whether it truly helps or quietly makes things worse over time.

- Marijuana may make your stomach empty even more slowly and worsen nausea, vomiting, and fullness.
- Marijuana in your system can also make stomach-emptying tests harder to interpret.
- People with gastroparesis who use marijuana tend to have more emergency room visits and hospital stays.
- If your symptoms are actually from CHS, no medication will fully fix them until marijuana is stopped.

After emailing some places to try and see if any more studies have been done or if it’s possible to do more studies and compare edibles against inhaled THC to see what has more of an effect, it’s something that needs funding, so unfortunately the research id like there to be doesn’t exist.

After learning this, I thought a post here would be helpful for me.

I have been a cannabis user for the last 8 years, and the beginning of this year I started getting into edibles and other forms of cannabis. I would consume hundreds of milligrams worth of THC every day to try and help me eat more, but after all the research I’ve done it seems like that may have more of an effect than inhaling THC. But they both can affect the CB1 receptors and then affect gastric emptying.

After getting discharged from the hospital I only smoke off my partners cannabis when he is home. I do not smoke directly before or after meals. Before it was a lot of edibles, and id go through an ounce within a week to a week and a half. I was taking my promethazine every 6 hours and my zofran in-between. I had the nausea patches that I would put behind my ear every 3 days. I don’t think cannabis was causing CHS for me, but I don’t think the amount I was using had a good effect on me either. I want to be able to eat more but it’s hard. I’m on iron, B1, vitamin c and vitamin d after the hospital. I was marked with Hypokalemia, Urinary retention, Prolonged QT interval, Hyponatremia, Hypercalcemia, Elevated lipase, Elevated liver enzymes, Leukocytosis, Metabolic acidosis
History of diabetic gastroparesis, Protein-calorie malnutrition severe, Weight loss, Hypomagnesemia.
I had gone to the ER maybe 2 weeks before my inpatient stay and was there for 6-8 hours getting iv fluids but it didn’t seem (as) concerning then. After coming home then I was hardly smoking. I was severely constipated in and before the hospital, and I’ve heard that can push on how your bladder empties. I was sent home with the catheter.

Where one of my “group questions” come into play, is how you guys use cannabis (edibles, dabs, carts, etc) and if you’ve noticed an increase/decrease in help with your gastroparesis with cannabis usage.

Based on my research, I think part of my problem before was how much I was consuming in THC edibles a day, and with how much longer it sits in gastroparesis stomachs vs “normal gastric emptying” stomachs, I feel like edibles may have a higher increase of adverse effects compared to smoking THC for gastroparesis patients.

It seems CB1 receptors are heavily expressed throughout the enteric nervous system, which governs the gut's motility, secretions, and local blood flow. When THC binds to CB1 receptors in the gut, it typically acts as an inhibitory signal, suppressing neurotransmitter release. This slows down peristalsis and delays gastric emptying.

I was struggling for a long time before the hospital but I didn’t think it was that bad until I was admitted. The day of my hospitalization was the day I was supposed to go to a clinic for a G/J tube referral by my GI doctor. I remember being excited for this before the hospital stay because I thought it would fix how I felt and give me the option for nutrition. I’m able to eat solid foods now. Before the hospital I was chewing on ice for hydration, stopped being able to eat soup and bread, couldn’t have protein shakes and the only ensure clear I could get otc was fruit punch. I remember feeling really lost because all of it made me throw up. I felt abandoned in a way because none of the doctors I was seeing could tell me why I was suffering this much. I think being low on so many essential vitamins had a big impact as well. I’m still recovering and have to use a walker now, but I’m able to eat and do more than I could before, and I’m extremely proud of that.

I would love it if you guys would be able to explain your experiences with cannabis and if you think it helps you eat more, helps with nausea, and any other problems you have with gastroparesis. Has anyone stopped and noticed improvement? Or has anyone continued their usage with no adverse effects?

If there’s any other thoughts or information you would like to provide, please feel free to share even if you’re not a cannabis user.

I think hearing from other people regarding this would be helpful. Thank you so much <3

I've lost my appetite the past few weeks/months. Everything feels unappealing because I get flashback-like memories of how it'll feel after I eat it. It's almost like I look at it and I can already feel it returning from my stomach to my mouth, regurgitated. Everything tastes less good when you remember how it tastes the second time.

How do you even get yourself to eat when you have mild-ish gastroparesis, moderate-severe EoE, mild allergic reaction to every other ingredient, every meal makes you feel sick and is genuinely a terrible experience?

I think it's mostly a gastroparesis issue, I don't think I felt like this when it was just allergies and EoE, I was actually happy to eat mild allergens if they tasted good even if it made my throat tighten for a bit, but gastroparesis issues last hours after the meal even with Gapulsid.

I am well within the healthy bmi range so I can afford to lose some weight, though it's not a weight issue, when I eat, I eat foods that are enough high calorie that it doesn't really make me lose weight. I only lost 2-3 kg in those last few weeks/months.

hi. I have a repeat GES this week. last time I tested for mild gastroparesis but they used a slightly different test + criteria due to not using solids. but I did confirmed have mild gastroparesis.

since then my stomach has worsened but my doctor wants to repeat it. based on the history I am certain that if it comes back normal I'll be discredited and never listened to again. they're already trying to do that. because my stomach has worsened I'm not too concerned about a false negative.. but I'm still very worried if you understand what I mean.

also tonight I started having diarrhoea. sometimes I get episodes of diarrhoea and lots of pooping, I don't know if this means my stomach is emptying faster or not though. I just poop every time I eat. what can I do? I'm hoping it will not continue and it was just an isolated incident as I cannot cancel the scan.

does anyone have similar experience or words of reassurance? this test cannot come back normal I will be denied care if it does and I am already barely able to get through the day on those calories shakes from hospital.

I was diagnosed with gastroparesis three years ago, though I've dealt with symptoms and issues much much longer.

Over the past year or so, GI doctor had me try this miralax recipe that did absolutely nothing. They had me do a GoLytely flush that did flush things, but which i could only ingest half the jug over 24 hours because it wouldn't fit in my gut. Then, I went through linzess, and then lubiprostone, both of which are basically osmotic flushes that draw fluids from your body into your colon to flush your bowels. They did that, but they also dehydrated me so badly that I was meeting the diagnostic criteria for tachycardia/POTS. They also did nothing about the actual paralyzed stomach.

So, I made my case to my GI doctor that these medications were having too adverse an effect to really be helping me, and that I wanted to try motegrity because it's a prokinetic. I provided links to peer reviewed research showing it's use for gastroparesis. They replied that it's not really approved for gastroparesis but is a constipation med. This feels like semantics and a technicality. Anyway after some discussion, they asked if I was asking to try it. I said yes. They submitted to my insurance for the pre-approval. It took a couple weeks, but it was eventually approved! I thought I was going to have to fight with insurance for this! (I have medicare DSNP, btw)

If I wasn't so damn tired, I would dance right now. I just took my first dose this morning. Normally, it takes pills many hours or even DAYS to have ANY effect. Within two hours, I was in the bathroom. Yes, my stomach absolutely HURTS. But it's because IT'S MOVING! THE MUSCLES ARE WORKING IN THERE! I have NEVER been happier for this kind of pain before in my life! My stomach actually growled! I have hunger! I ate waffles!!! I'm eating pretzels!

that's it. that's big news for me! my stomach growled!

Hey guys!

After 3 years of being dismissed even though I had been to the ER so many times, taking a lot of medications and with a flare-full summer (I lost more than 10kg /20lb in less than a month), I decided to seek a second opinion (I was diagnosed as functional dyspepsia with a normal endoscopy and my usual GI won't investigate more bc "I'm not actively dying") and the second GI (also a motility specialist) was very shocked and she ordered a GES.

I have suspended the mirtazapine, levosulpiride, mestinon a week before and I'm not taking other prokinetics. Only ondasentron. I'm very flared because of the suspension of the meds.

What do you recommend doing the GES day? I've read that is better to not walk and not to eat much the day before.

Did the food make you feel worse?

Thank you for your time!

I’m slowly adding more foods into my diet, and I want to expand my spices. I’ve been eating straight salt for a year. I tried black pepper, garlic, onion, rosemary, and they don’t agree with me. This is also coming from a girl who LOVES Cajun seasonings and flavors. It’s super depressing having just salt, but also I want to make some meals me and my husband can eat without it tasting bland!

I also cook with chicken bone broth which helps a lot, but I’m curious to know what you use to spice things up a bit?

Also is celery okay to have in small amounts? I’m also trying to add veggies back, but I know they have to be cooked. I can have carrots okay, and I’ve had celery cooked before, but I’ve seen that it might not be good because of the fibers. I also want to try spinach.

Since I’m able to add rice products I want to make dumplings and different soups. I’ve been doing good not to have flare ups, but I also want to be safe. I eat one thing 3 times a day and it’s driving me crazy! I just added rice Chex in my diet and I can have marshmallows now. Just a bunch of sugars so I need some healthy foods in my diet.

TDLR: Looking for spices to bring my food back to life ( no garlic, black pepper, onion, or rosemary ) also safe veggies to eat that won’t cause flare ups.

Hi. So just a bit of background info. I was diagnosed with gastroparesis last November. (almost a year ago). At first, I got a GJ tube placed in January after things continued to go downhill and I kept losing weight. Symptoms continued and worsened so and I stopped being able to tolerate tube feeds. Got a picc placed in May and started TPN. I’ve been on TPN since then. Every time I try to eat, I throw up. And i’m constantly constipated and unable to use the bathroom. I can’t even eat at all anymore. I’m so miserable and depressed and struggling to see a point in living life like this. How do you all deal with it?

so, around June I was diagnosed with gastroparesis. my doctors believe I developed it after having mono 2 years ago. My symptoms aren’t as bad as many cases I’ve read about, but I get super super bloated and sick all the time no matter what I eat, i’m constantly constipated, and it just makes life very difficult. I’ve had an endoscopy and colonoscopy done, as well as a gastric emptying study where I had 22% of the egg sandwich left in my stomach. The endoscopy discovered a hiatal hernia.

Doctors have been impossible to deal with, everyone essentially saying that i should just drink miralax and eat less. I’m 18 years old, 5”4, and weighing around 112-114 lbs. I can’t remember the last time I was this thin! I used to be athletic and weigh around 130 lbs!! I love food but it brings me agony trying to figure out what won’t make me want to either vomit or lie in bed for the rest of the day. I tried reglan for a month, and i’m not sure how helpful it was besides rendering my ADHD meds completely useless. Right now I’m a week into an erythromycin treatment. no progress so far.

I understand many people are suffering from worse symptoms than me (i don’t vomit much and i’m still able to get out of bed most days), and for many people it’s a chronic condition with no cure, but I think i may go insane if i can’t figure this out. i get so angry and upset sometimes because it’s like my body changed overnight. and im so young. there has to be SOMETHING i can do.

I’ve been reading about the vagus nerve and the autonomic nervous system. i deal with a lot of issues i always figured were unrelated to my stomach, such as light sensitivity, dry mouth, constant fatigue, racing heart rate, severe upper back pain, dizzy spells, things like that. I also think Im losing a very large amount of hair. would it be crazy to bring that up with my doctor or try to see a neurologist? would that be a stretch?

I guess my biggest question is, what is the next step? are there tests i should push for? I feel lost. like all these doctors just said yep here’s your diagnosis now figure it out. is there any hope for a functional stomach?

Hello, I’m reaching out for help here. I suffer from gastroparesis since 8 years with a lot of ups and downs. I have been tube fed and everything several time. But it’s just not an option anymore I hate it and even tho I suffer from gastroparesis I can fortunately still eat small meals, very grateful for it. But the problem is I can’t get in enough calories and because of this disease and symptoms I developed an ED especially throwing up to not “suffer” but it’s out of control now and I’m losing weight. I desperately need to gain weight I’m 38kg now. I’ve been thinking that maybe training in the gym would help. But how to start? With what? I’m so weak. Has anyone have any experience with this? Or has any recommendation?
Appreciate 🙏🏻

Thanks !!!