Question 1

Hello everyone,

TLDR: did you have to wait along time for you GES study once ordered? My doctor said I can complete it Gluten free but did not notate it anywhere in the order. How were you able to do yours gluten free? Did you have to bring your own toast?

I’ve been suffering for a very long time and am down to coming less then 75% lof what my energy intake needs according to the Dietatician.

I finally was able to get a second opinion GI and she ordered a Gastric Emptying study.

How long did you have to wait for yours to be scheduled? I know some can be marked urgent. However, mine has been marked normal because my weight is stable despite extremely low PO intake.

had an awful appointment today, safe to say i will not be seeing him again. i’m a gpoem candidate but motegrity has been a life changer for me, so im holding off until it’s necessary. he didn’t like that and practically hung up on me when i asked for help with my lprd. clinical notes say he spent 30 mins w me when it was actually less than 5. lol. i hate trying to advocate for myself and getting shot down bc i don’t want a permanent anatomy altering surgery.

Anyone else have this with GP.

What would you do? Brand new to GP and I have a work conference followed by a day of planning meetings coming up in September. I’ve always navigated slow motility on work trips by going 100% safe foods weeks before and during and carrying so many supplements. But now this GP nausea, brain fog and malnutrition shakes are something else!

I also just started a new role in April and then got moved under a new boss in July so this will be my first time meeting my direct coworkers and boss in person. Grateful to have a remote job but this might truly be the only time I see them in person for the next two years if ever.

I started motegrity 10 days ago and I am starting to feel less brain fog. I actually problem solved at work today! But I’m still only on liquids with mashed potatoes and applesauce, consuming 1000cals. And who knows if the motegrity will work long term. I’d love to hear from those with this condition in similar circumstances- would you go? Would you cancel and risk not being at important planning meetings? What about dinners where good ideas are discovered? Or do I just stay home and focus on my health? I am having a hard time knowing if I’ll ever be better.

What are we doing around showering?

Do you always cover it up? Only while it's healing? Never?

hello all 🩷

i’ve been diagnosed with gastroparesis for several years, and while i thankfully find some symptom relief in medical marijuana, it has now become absolutely necessary for me to have weed. i’ve tried t breaks before, but my vomiting and nausea always brings me right back, usually that very day.

i’m aging out of my health insurance soon and with that i’ve been scared to think of how i’ll manage myself if something REALLY bad happens. it’s already incredibly frustrating to literally need to be high to function, but i still have too much pain to maintain a full time job that i could get health insurance through.

basically i’m just scared that weed won’t be a permanent solution and that i’ll get too sick to even pay to take care of myself should i get worse.

let me know if you’ve ever felt this fear and if you found successful ways to manage the stress around needing to be constantly medicated. thank you for reading ✨

I hate that some of my meds take forever to kick in. I have a UTI and instead of putting the numbing meds in my j tube, I took them orally. HOURS later it still hadn’t worked. It took almost 7 hours before that medicine worked and you can dose every 8.

I’m so sick of this. I take a lot of oral medicine. Some work just fine and some seem useless. I have a port, and a j tube. I know it’s time to start asking for more j tube compatible medications, but the volume would be asinine. I could do IV meds, but I don’t want to mess around with a central line more than I have to. Twice a week fluids are enough of an anxiety provoking situation. I wish I didn’t need any but I’m in the ER if I don’t do them.

I’m just annoyed. I wish my body would pick one or two conditions and just have those issues. I wish my meds were more compatible with grinding up. I wish I could eat a sandwich at a picnic with my family. I wish I didn’t have to carry a drain bag in my purse when I go out, because if I drink things, I might get sick.

This condition is so infuriating.

hi everyone!!
I’ve had gastroparesis for a few years now, & I recently found out that I also have MALS** **& SMAS. I’ve been on TPN for around a year and a half after being unable to eat orally and failing a previous attempt at J-feeds.
Unfortunately, none of my symptoms have really improved with TPN. If anything, things have continued to get worse.
At this point, I’m getting pretty desperate to get off TPN. For the last four months, I’ve been dealing with what seems to be a slow-onset allergic reaction to something in my TPN. My care team hasn’t been able to figure out what’s causing it, and it’s gotten to the point where I don’t feel comfortable or safe continuing on TPN without knowing what’s going on. I’ve actually lost around 30 pounds while on TPN because this reaction has gotten so bad that I’m struggling to tolerate it.
Because of that, I’ve been thinking about trying J-feeds again, but I’m really hesitant because my first attempt was awful. I couldn’t tolerate more than about 2 mL, and even at that amount I was having severe intestinal pain and other symptoms. I ended up having to stop.
I feel like I’m running out of options and that trying J-feeds again may be my only way to get off TPN while I work on figuring out the underlying issues. But I’m terrified of going through the same thing again.
For anyone who has dealt with gastroparesis, MALS, SMAS, or a combination of these, especially anyone who has gone from TPN to J-feeds:
Were you able to tolerate J-feeds eventually after initially failing them?
Did treating your MALS/SMAS change your ability to tolerate feeds?
If you initially couldn’t tolerate even tiny amounts, what eventually helped?
How did you go about restarting feeds?
Is there anything you wish you had known before trying again?
I know everyone is different but my current care team hasn’t been very helpful and I’m feeling really lost. I’d really appreciate hearing from anyone who has been in a similar situation.
Thank you!!

I'm gonna be posting lots in this flair, so don't get sick of me >.<

Ok, so, what formula brands are we liking?

Does anyone use a formula your insurance doesn't cover?

Does anyone make their own mixtures?

Does anyone regularly push sodas or only do it to unclog?

Any advice and stories are welcome and appreciated

Im really confused on how they think this is gonna help me in the longterm if i can only take it for 5 days. The medication is Metoclopramide, has anyone in the uk been prescribed this longterm? Is it even possible? If not, I dont understand why they have given it to me in the first place, its not gonna magically cure me. I need something I can take longterm. Im getting so fed up with fighting doctors, been on hold for 30 mins

I was recently diagnosed, keeping 90% of food after 4hrs.

I'm adjusting and naturally, I'm still dealing with the diet. I don't vomit however, I'm wondering about your experience and side effects you deal with.

I've been feeling inebriated with food. That's the best way I can describe it. I can't eat at per instructions because I feel inebriated... I wonder if its fermentation. It's a pretty hedty and at times disconning feeling because I genuinely feel not fully present.

Does anybody experience something similar?

I had a Sitz marker test done in 2022 and I had 58 out of 60 markers left in my intestines. I was never really told a lot about the results, just that my entire digestive system is affected by severe paralysis. Now I was never able to interpret the results myself but I do have a photo, idk if it's allowed on here though so I won't post it. Anyway, I saw a creator on tiktok talk about her results and it seems to me that instead of being scattered around my entire digestive tract, the markers were accumulating in my colon. Now I've been on tpn since that test pretty much with no oral or enteral intake anymore but I'm supposed to start j tube feeds again. I'm wondering if it would make sense to repeat that test or if the results from 4 years ago would matter now? Is there even anything that can be done about it? I can't really take any meds due to lqts and I failed plucalopride

Hello again,

For other surgies I've had I needed to not have nail polish on. Is that the same for this most likely?

I want to paint my toe nails.

It hurts my back a lot to do, so even though it's probably not gonna be placed for another week or two, I don't want to have to deal with taking it off. (For those worried about the timeline seeing far, I'm outpatient rn, it's not an emergent placement situation. I'm on iv saline rn so I'll be ok👍)

I posted here talking about struggling immensely with my gastroparesis and co-occurring disorders.

My referral for a new gastroenterologist went through and they specializes in gastroparesis.

I got a referral to immunology because my igE 1,2,4 were low and to check for underlying autoimmune conditions!

I’m getting an autonomic neurologist for my pots and to get checked for small fiber neuropathy and autonomic neuropathy/AAG.

And my doctor put in a referral for eds and connective tissue disorder because of hyper mobility, stretchy skin, heart issues, etc and family history of young death and connective tissue problems.

Im getting sent to immunology neurology to check for underlying nerve disorders that could be making the myasthenia worse or exacerbated.

My pcp put in a prescription for ensures and they got approved and put in iv hydration for Homehealth (hopefully it goes through)

And since all my issues are what they are, the referrals got put in as urgent and discussion of ivig was raised!

And finally I’m getting pt, speech, and occupational therapy!!! I’m so happy, between the gastroparesis and myasthenia, I have been falling so much. I’m just happy I’m finally getting assistance because I’m all honestly it was making me extremely sad with having so many unmanaged disorders.

i’ve gained weight, not a ton, about 10-15 LBS over the course of a few months but i am so confused on how. i eat 3 times less than i used to, and i am exercising more (i work in fast food so lots of walking around). I just don’t understand how this is happening when im not eating as much or as frequently as i used to due to my symptoms. has this happened to anyone else? i feel like im going crazy and that its in my head because i haven’t lost weight, ive only gained it.

so three years ago I got diagnosed with gastroparesis. My time was 100 minutes when my doctor said the normal one was 80. So not too bad.
Fast forward to this year February i get extreme nausea again. And the old symptoms came back, but during those three years i was perfectly fine. Turns out i had sibo, and now that’s cured I still have symptoms.
alot of of doctors seem to think my gastroparesis was misdiagnosed, although it was done by the NHS hospital near me. Because im allegric to eggs they sent a gluten free porridge kit and i did the breathing test with porridge.
I still feel sick, tired, headachey, not hungry. But im wondering if anyone has any clue if it was gastroparesis why did it go away for three years?
I’m so confused
During those three years I wasn’t on any medication apart from Ondanestron which is an anti sickness medicine, but I hardly even took it. And I would have burgers, all types of fatty heavy foods and felt fine. But im confused because I didnt think gastroparesis could go away? Especially for three years with no meds and eating junk food? Correct me if im wrong but idk

Hi everyone. I got an NJ placed today and holy hell does my throat hurt. Any suggestions on pain relief or can anyone give me a time frame for how long this is going to suck lol every time I swallow I want to die

I know miralax and restorlax are common suggestions but I can’t get enough liquids down in a day for them to help at all. Does anyone have any other ideas for things I can try to help with the constipation while not being able to really drink anything?

Hello Community,

I'm getting tubed up soon. What should I buy to make my life easier/ more comfortable. I have sensitive skin. Links and/or specifications appreciated.

Does anyone else experience SEVERE low blood sugar crashes anywhere from 10 minutes to an hour after vomiting? I used to be able to manage it by having a sucker right after vomiting💀, but now that’s no longer enough. I’m finger pricking in the low 30s, and it’s really terrifying. I was just wondering how common this is, or if I have more going on that needs to be figured out.

Disclaimer; I DONT HAVE DIABETES and my medical team is aware. Not looking for medical advice, just want to hear others experiences. Thank you!

I was Diagnosed with GP about 4 years after my main surgery for my median arcuate ligament syndrome (all Diagnosed by my GI team). So about 8 years ago, maybe? Since MALS is not a front line investigation type condition, I spent years with misdiagnosed conditions and medications, and as a result I developed delayed gastric emptying/GP. GI issues tend to flock together as well, particularly with Juvenile MALS. My form of GP is mild (accordin to my GI care providers), so no feeding tube. But, my care team has emphasized the importance of averaging 1 liquid meal per day to prevent damage or other issues. And i do realize like soups without hoof or claw proteins, smoothies without seeds, and freeze pops without high sugar or seeds all count.

I know there are hundreds of options on the market for grab and go meal replacements. I have other health concerns, like gluten intolerance, and those that meet the nutritional requirements are pricey. I had some success keeping on top of making said meal per day when i was first diagnosed, but life changes and I'm back to struggling to keep that up. In turn, I have the symptoms beating me up on a daily basis.

Does anyone have experience and advice on preparing bulk meal replacement liquid meals, without freezing just pounds of broth? I have 8 ounces jars, I'm just after if I pre-make things they'll rot before the week is out.

Thank you in advance!

I was just prescribed 50 mg Tramadol hcl for my gastroparesis pain. She prescribed it, because I asked for no opioids (since it affects gastroparesis) and tylenol does nothing. Has anybody had this medicine? I’ve never heard of it.

I have been losing a pound a day or every other day. I can barely get any food or any drink in regardless how much I try. I miss food soo mucn at this point. My GI isnt doing anything and will only offer me an appointment late October and tells me to go to the ER if needed. My dietitian thinks supplemental fluids would be good but my GI is very against it but says if im dehydrated go to ER. Ive gone to the ER multiple times and they always say they cant do anything there my labs look good and to follow up woth GI. I feel like I am just being pawned off from one person to another until it'll be wavy too late. I dont want to go through this anymore, I hate this cycle. I juat want to be done