Question 1

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!

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?

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 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!

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.

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.

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.

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?

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!

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?

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.

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?

I have to drive (rather, my husband has to drive) 250 miles across the Rockies to Denver for my surgery and I'm being admitted for at least two days to make sure I don't get refeeding syndrome. Then they want me to stay in Denver for a few more days after discharge before I can make the drive home. Luckily the VA is putting me up in a hotel next to the hospital.

Any advice on what I need for recovery? Supplies I might need that are above and beyond what I'll be getting from the hospital? What can expect when I get my first few feeds?

I'm terrified..... 😞😞😞

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 !!!

Turns out, my cannabis edibles were hitting 18 hours later because my stomach was moving that fucking slow 😂

Basically I’d have a BP with systolic in the low 90s and have trouble keeping my eyes open. It was like my eyelids were suddenly made of lead. Plus I’d get really intense brain fog. I assumed it must’ve been my dysautonomia. I even called my cardiac electrophysiologist who thought the same thing as me and told me to take my midodrine proactively and 5 times a day. But that wasn’t helping all the time either.

I was so confused until I asked my GI doctor why edibles suddenly stopped working (this also happened during this GP flare). He said that wouldn’t happen but what’s more likely is they’d take effect late once they hit my small intestine.
So I did some reading, and found that most cannabis edibles are absorbed by the small intestine, not the stomach. But if they get stuck in your stomach for hours because of GP, they might not hit for hours and hours. And could hit while you’re doing something important like driving.

My friend who’s a budtender recommended nano-emmulsified/ water soluble edibles, as those would get absorbed by the stomach. Those took longer than usual to work but at least didn’t hit 18 hours later, only about 4.

All this to say, if you have gastroparesis, be careful with the timing of your edibles!

If you have done pyloric Botox and you’ve gotten any symptom relief, for how long did that last before your symptoms began to return?

I just recently had the procedure done and have found some relief and I know it varies for different people how long it lasts, but I’m curious about the experiences of the people here.

I (29F) am noticing that I can’t seem to stay out of bed. The only time I have a slight amount of relief from the constant vomiting, bloating, pain, and weakness is when I’m laying in bed. I think laying down takes pressure off of my core but I’m not entirely sure why I get relief. I’ve tried all the medications possible, have a gastric stimulator, and am on a liquid diet but nothing works. If anything I have gotten worse than how I was a year ago when I first started having severe gastroparesis symptoms. I don’t know what to do. I’m waiting for an assessment to be declared disabled through the state and I’m fairly certain I will qualify since I’m too weak to even bathe myself. I can feel myself getting worse and worse by the day, which terrifies me. Is there ever going to be a rock bottom to the hole I’m falling down?

More of a vent than a true question, but advice is welcome!

I was officially diagnosed via gastric emptying study in august, but it’s suspected I’ve had GP for at least ten years. I got sick last November, and since then my symptoms have been way worse. I’m barely taking in 500 calories a day, extreme stomach pain and nausea every time I eat, with baseline pain/nausea. I’ve lost 80 pounds since January. I can also barely tolerate liquids. I have lost a ton of muscle as well. I’m always exhausted, my bp is low, my POTS symptoms are worse because I can’t hydrate adequately. I have no life right now. I barely have energy for work, and I only am going still because I can’t afford to not work.

My PCP doesnt know how to help, the GI dr I saw basically told me to take miralax and just deal with it. I often have to go to the ER for fluids. My pcp is fighting with my insurance to get me standing orders for twice weekly fluids at an outpatient infusion center, but insurance is MAJORLY pushing back.

My labs dont show major malnutrition, but I know thats not always the only indicator of malnutrition. I’ve lost 20 pounds in the past 3 months- without trying!!!

I know i am still obese. I know I’m not skin and bones. But fat people can still be malnourished! I still deal with the symptoms every day! I still have no energy! I straight up asked the GI dr about an nj tube for fluids and supplemental nutrition, just until we can find a medication regimen that works for me. She literally said that until I am “severely underweight” she won’t even consider one. I’m sure the fact that I don’t vomit also doesnt help…

I feel like I’m going crazy. I don’t know what to do. I am in pain 24/7. Every time I eat it causes worse pain, worse nausea. I’m starting to be scared of food because I know it will hurt me. I don’t know wtf else to do. I have a second opinion(over the phone) consult in January, bur I don’t know if I can wait that long tbh… I just. I need help and none of the doctors I see are willing or able to help.

Gastroparesis is taking over my life, and I honestly don't know what to do anymore. 💚 Looking for natural remedies, advice, and support.

I'm 27 years old, and I'm genuinely exhausted from trying to function like a normal person while dealing with this illness.

I have severe gastroparesis, and it feels like my body is constantly fighting against me. The nausea is practically an everyday occurrence, vomiting is frequent, and eating has become something I almost dread rather than enjoy. Most days, I'm lucky if I can manage one meal and maybe a snack.

Some of my worst flare-ups involve vomiting for HOURS. It's not just getting sick once or twice and moving on with my day. I'll be stuck vomiting and dry heaving repeatedly, sometimes to the point where I'm bringing up blood.

I also have stomach ulcers, and they've been getting worse. Between the constant nausea, repeated vomiting, abdominal pain, and difficulty eating, it feels like my digestive system never gets a chance to recover.

There are days when I'm physically exhausted before I've even had the opportunity to do anything. It's hard to explain to someone who hasn't experienced it how draining it is to spend hours being sick, only to still be expected to function normally afterward.

Recently, I've also been struggling with severe bloating, constipation, and abdominal pain. My stomach gets so swollen, especially above my belly button, that I can physically see and feel the difference. Some days, my stomach is so bloated that my belly button is practically hidden.

I've been struggling to have regular bowel movements. Sometimes I'll go days without having a decent one, and I've noticed my nausea seems significantly worse when I'm constipated.

Lately, eating has become especially painful. Within 5–10 minutes of eating, I'll sometimes experience horrible, contraction-like abdominal pain. I'm talking sweating, breathing through the pain, and nearly crying while sitting on the toilet. Sometimes the pain improves after finally having a bowel movement, but it's absolutely miserable.

And then there's the financial side of having a chronic illness.

I work as a behavioral therapist, and I genuinely love what I do. I've worked in this field for years, and helping others is something I'm incredibly passionate about.

Unfortunately, between my chronic illness, emergency room visits, hospitalizations, and clients canceling sessions, maintaining consistent hours has become nearly impossible.

I haven't worked more than 12 hours a week for the past two months.

I WANT to work. I WANT to support myself. I WANT to be independent and have a future where I'm not constantly worrying about whether my body is going to cooperate.

But I can't control when my gastroparesis decides to flare up, when I'm going to spend the morning vomiting, or when I'm going to end up in the emergency room again. And I can't control when my clients cancel, leaving me with even fewer hours.

On top of everything, I currently don't have health insurance.

I've applied for Michigan state insurance (Medicaid) and have been denied for supposedly making too much money. Which is incredibly frustrating considering I haven't been able to work more than 12 hours a week for the last two months.

I'm barely making enough money to cover my basic living expenses, yet somehow I'm being told I make too much to qualify for medical assistance.

It's such a defeating cycle. I'm too sick to work consistently, but I need to work to afford the medical care that could potentially help me get healthy enough to work.

Specialist appointments, medications, testing, and hospital visits aren't exactly affordable when you're already struggling financially.

And honestly, the emotional side of all this is exhausting.

I'm 27. I want to build a life for myself. I want to have a family someday. I want to be able to go to work, enjoy food, make plans, and actually follow through with them without constantly wondering whether I'm going to be sick.

I'm tired of waking up nauseous. I'm tired of being scared to eat. I'm tired of vomiting until there's blood. I'm tired of feeling guilty when I have to call off work. I'm tired of worrying about money, and I'm tired of feeling like my entire life revolves around my stomach.

I feel like I'm constantly trying to catch up with life, but my body keeps pulling me backward.

Which brings me to why I'm posting. 💚

I'm really interested in hearing what other people with gastroparesis are doing to manage their symptoms naturally, especially those who don't have access to consistent medical care.

Have any of you found relief through things like:

- Herbal teas, ginger, peppermint, or other natural remedies?

- Heating pads or other ways to manage abdominal pain?

- Dietary changes, specific foods, or meal routines?

- Gentle exercises, stretching, or movement to help with digestion?

- Safe ways to manage constipation and bloating?

- Anything else that has genuinely improved your quality of life?

I'm also curious if anyone has found certain natural remedies that actually made their symptoms worse.

I completely understand that everyone's gastroparesis is different and that natural remedies aren't a replacement for medical treatment. I know symptoms like vomiting blood need medical attention. I'm just trying to find affordable ways to make my day-to-day life a little more manageable while I work toward getting insurance again.

And if anyone has dealt with being denied Medicaid despite having significantly reduced income, I'd really appreciate hearing how you handled that too.

I'm not posting this for pity. I think I just need to connect with people who genuinely understand what living with this disease is like.

Because sometimes it feels like unless someone has experienced gastroparesis themselves, they don't fully understand just how much it can affect every single aspect of your life.

I don't want to spend the rest of my twenties simply surviving from one flare-up to the next. I want to actually LIVE my life.

If you've made it this far, thank you for reading. I'd genuinely appreciate any advice, experiences, resources, or encouragement. 💚

After 2 years of pain and back and forth doctors visits, I got my official diagnosis today of post viral gastroparesis. It’s been two years. Couldn’t tell you what it was. What’s the likelihood I recover two years later? I feel like I won’t so please give me hope 😭

tw // eating disorder talk, bowel movement talk

hey all. i've had GP, SIBO and IBS diagnosed for about 3 years now. it has never really been managed well despite dieting attempts (FODMAP, SIBO diets etc), cutting out certain foods (dairy & gluten when i can) and medications (antifungals for SIBO + symptomatic analgesia).

this year in particular, my bloating & pain for some reason has become so entirely worse. (TMI) my main symptom used to be severe overflow diarrhorea, but it has been a while since i had that. instead, i feel full 24/7 and seemingly anything i put in my body causes me pain and bloating to the point i look pregnant.

due to this, (and i know this is bad), i have been purposely avoiding eating and drinking basically everything because of the severity of symptoms i feel. my docs are concerned i'm developing an eating disorder because of it.

i've been to the ER before and they can't really do -!anything because, obviously, i'm not technically having any sort of emergency. but i really am struggling to manage any food or drink anymore and i just feel like if i were to be admitted and practically force fed & hydrated it could help me get back on track. i'm terrified of it getting to the point i'll need an NG / NT tube.

i guess i'm just looking for some advice or ideas for what to do? should i try the ER anyways? should i just wait until my next specialist appointment? (december).

thanks in advance. keep being strong 💪

TMI for poop talk I’m sorry

I have had some degree of constipation all my life- I didn’t know people had more than 2 bowel movements a week until I literally became a nurse. After my gastroparesis diagnosis last October, my constipation has just gotten worse and worse. I have tried so many things- I exercise (even if it’s just two walks on high symptom days) daily, I have as much fiber as I can tolerate and supplement, I have tried magnesium supplements, Mira lax, senna, linzess, EVERYTHING. I used to be able to drink a bottle of mag citrate one day every week to two weeks and just have a really shitty day but then be all stool free. It’s been months since I had a bowel movement without this. Now even mag citrate doesn’t work and I’ve resorted to enemas. We are borderline fecal impaction at this point. Has anyone has some success stories or experienced something similar? The other day someone asked me how many weeks pregnant I was and it was all just poop. Not awesome for the self esteem.

Edit: update! my GI is having me try motegrity again, I am back on my phase 1 GP diet, and nutritionist is deciding whether we need to try the NJ tube again. Thank you everyone for the advice! Hopefully this helps :/

20 years post abdominal radiation therapy I continue to suffer from gastroperasis which seems to be in the middle small intestine. I need to eat a small, non fibre breakfast with fluids, I can’t eat solid food at lunch (typically soup, or if real food I chew every mouthful 40 times and drink >1 litre of water… so I make soup). at dinner I have more freedom. But eating too much at dinner is definitely a trigger. My cancer was, of course, abdominal, accompanied by 6 or 7 major abdominal surgeries. so the Begas nerve network is likely compromised as is the abdominal nerve complex. I think the radiation damaged some of the small intestine tissue. I had one doctor tell me this was likely. I have had 3 surgeries to remove suspected connective tissue strangulation but all came up empty/ non conclusive and the attacks occurred within <30 days.

Has anyone experienced similar problems?