#gastroparesis — Public Fediverse posts

Update: good news. The dietician approved Kate Farms liquid nutrition after three days of asking. I have shakes in my room now as a bridge until the facility's supply arrives. My stomach is calm, my RA pain is nearly gone, and my energy is back. Liquid nutrition works — my body just can't process solid food right now.

Anne, the head of nursing, is now coordinating my appointments and transport. An RN is helping me file a grievance about the three-day delay. My mom doesn't have to keep bringing shakes from home.

To the people who donated today — thank you. You helped fill the gap when the system couldn't. The GoFundMe is still active because the $30 SSI doesn't cover phone, AI tools, or medical costs, but tonight things are better than they were this morning.

https://gofund.me/56352d472

#Disability #Gastroparesis #ChronicIllness #Accessibility #NursingHome #MedicalNutrition

Update from the nursing home. My gastroparesis is flaring again and the facility can't provide liquid nutrition. I've been asking since Saturday. The dietician thought I meant broth. The doctor didn't let me explain. They keep bringing me solid food I can't eat.

My mom brought medical food shakes from home that work, but I'm out and she can't keep supplying them. My SSI check this month is $30 because the nursing home takes the rest. That doesn't cover my phone bill, let alone the AI tools I use to function, or medical food if we have to keep buying it ourselves.

If the nursing home can't feed me, my mom may have to pull me out, which could derail the group home placement we've been working toward.

If you can help, here's the link: https://gofund.me/56352d472

If you can't donate, sharing helps. Thank you.

#Disability #Gastroparesis #ChronicIllness #Accessibility #DisabledWriter #NursingHome #MedicalNutrition

Influencer with Paralyzed Stomach Addresses Speculation That Her Condition Is Due to Taking GLP-1 (Exclusive)

NEED TO KNOW Shayla Talei lives with Complex Regional Pain Syndrome (CRPS) and gastroparesis, the latter of which…
#NewsBeep #News #US #USA #UnitedStates #UnitedStatesOfAmerica #Health #complexregionalpainsyndrome #gastroparesis #gastroparesissymptoms #MayoClinic #SocialMedia
https://www.newsbeep.com/us/589015/

THE DOUBLE-EDGED SWORD OF OZEMPIC

Ozempic users in the USA are reporting severe stomach issues like gastroparesis. Lawsuits claim the drug causes NAION. Learn about the risks.

#OzempicLawsuit, #DrugSideEffects, #Gastroparesis, #NAION, #NovoNordisk

https://newsletter.tf/ozempic-lawsuits-allege-serious-side-effects-usa/

New lawsuits are being filed against Ozempic makers due to serious stomach problems. This is happening as more people use it for weight loss.

#OzempicLawsuit, #DrugSideEffects, #Gastroparesis, #NAION, #NovoNordisk
https://newsletter.tf/ozempic-lawsuits-allege-serious-side-effects-usa/

🌙 When the virus departs, why does the midnight coughing remain? Families navigate unexplained reflux symptoms months after infection, searching for answers in the pre-dawn hours.

✍️ Research explores pathways that may link viral illness to lasting digestive disruption: https://TPC8.short.gy/0b7ETNSB

🌅 Dawn always comes, but understanding arrives on its own timeline.

#PostViralReflux #Gastroenterology #Gastroparesis #GERD #DigestiveHealth #PediatricHealth #HealthScience #ChronicReflux #STEM #TPC8

@AncTreat5358

First, you mentioning gastroparesis and that you have a lot of medical conditions I would ask if you've talked to a doctor about Ehlers Danlos. If not, I would suggest it.

Secondly, it's not fun. I don't know exactly what my chart says I have but gastroparesis is certainly something that I deal with but is one of the lesser things I've focused on though I think it's starting to show it's self a lot more recently. A few things I've noticed helping is hydration (if you are able to get saline IVs somewhere especially), marijuana (specifically it seems CBG helps me more), and Huperzine A (a supplement you can get OTC but you absolutely should let your doctor know you are taking it). Additionally I have noticed a histamine component but I'm not sure if it's a general gastroparesis thing or if it's a me thing but Cromolyn Sodium (Gastrocrom) helps a lot but it's unfortunately an expensive medicine.

I'm happy to talk more about it but don't want to just infodump

#Gastroparesis #AskFedi

Hi everyone. How are you tonight?

It’s been a rough few months, and I wanted to share an update since I haven’t posted in a while.

A few months ago, I was officially diagnosed with Rheumatoid Arthritis, something we’ve suspected for a while, so it was nice to finally get confirmation. My rheumatologist started me on Methotrexate, and that’s when things took a turn for the worse.

I was prescribed 6 tablets once a week and took them for 6 weeks. But I started getting extremely sick with flu-like symptoms, worsened gastroparesis, painful sores all over my body, and more. When we looked up Methotrexate side effects, I had around 20 of the ones that say to seek medical attention immediately.

We later found out that, due to my other health conditions, I should never have been prescribed Methotrexate in the first place. I also should’ve been monitored weekly, which wasn’t happening. Things got so bad we nearly went to the hospital several times, but since I’m immunocompromised and Methotrexate suppresses the immune system, we were afraid I’d catch something in the ER.

We tried contacting my doctors, but no one responded. So we stopped the medication ourselves. It’s been about 3 weeks since I stopped, and I’m still recovering, but I’m slowly getting stronger. Unfortunately, my RA is flaring badly in my hands and feet since it’s currently untreated.

A few days ago, I did end up going to the hospital because I wasn’t improving. They found my blood sugar was dangerously high, diagnosed me with diabetes, gave me fluids, and discharged me. Ironically, I started feeling better the next day. Now we’re unsure if I truly have diabetes or if it’s a lingering effect of the Methotrexate, which can mess with blood levels.

I was so sick I had to take a C in my theology course because I couldn’t finish the final paper, and I had to drop the next class I was supposed to start. My next course begins August 25, and I’m doing everything I can to be well enough to take it.

This whole experience showed me how broken my care coordination is. My primary care doctor didn’t know what was happening and wasn’t communicating with my other specialists. No one was checking my chart to make sure treatments wouldn’t conflict with my other conditions. I have a meeting next week with my Medicaid service coordinator to talk about better coordinated care and possibly enrolling in dual Medicare/Medicaid, which I’ve been told I qualify for.

This could have killed me. I’m grateful to be alive and slowly healing, but I’m also angry and frustrated that this happened at all.

Thanks for reading. I appreciate all of you.

#ChronicIllness #disability #RheumatoidArthritis #Methotrexate #Gastroparesis #Diabetes #Medicaid #Medicare #HealthcareSystem #PatientSafety #CareCoordination #Immunocompromised #DisabledAndProud #Survivor #Spoonie #SpoonieLife #HealthUpdate #ChristianSpoonie

I deviated from my usual eating patterns for my birthday party on Sunday and am still dealing with the repercussions today. I love birthday cake, strawberry daiquiris, and snacking all day, but my GI tract does not. It went on strike.

I was so bloated last night that I looked third-trimester pregnant. I'm considerably smaller today after deplorable bathroom shenanigans taking place throughout the night courtesy of a teeny weeny pill, but I have no appetite. I have been sipping on tea and avoiding the gym. Hopefully I'll be recovered enough for @Knightky 's work party tomorrow. Phew! #IBS #Diverticulosis #Gastroparesis #Dyspepsia #ChronicIllness

Gastroparesen skenar just nu. Har fortfarande fett att ta av men märker hur utmattad jag lätt blir. Hur hjärtat skenar. Hur jag är konstant illamående och kräks. Att det gör ont efter att ha ätit.

Och det jobbigaste, att jag får små blackouts när jag försöker pressa kroppen. Tänk som flimrande lysrör.

Jag är mer aktiv än på många år men det kräver en hel del för att kunna hålla tempot uppe.
#gastroparesis #disability #funkisliv

Young woman with Ehlers-Danlos discusses her experience with gastroparesis -

What made my GASTROPARESIS better?!
https://youtu.be/ujtdwrGvne0?si=7dCWlo23xRCnNYdc

#Gastroparesis #vomiting #nausea #EhlersDanlos #hEDS

Honestly, this night was horrific. I woke up with an oxygen saturation of 89% and a heart rate for 150 as I had badly aspirated. It was quite frightening, but with my inhaler and oxygen, I could stabilise myself. I got back to sleep only to wake up an hour later with severe pain. I took some pain killers and anti nausea meds and waited for the worst pain to pass. About an hour later I could go back to sleep. During the day, I've just been resting and trying to recover.

#mecfs #gastroparesis

Gastroparesis Awareness Month. Gastroparesis is often associated with Ehlers-Danlos syndrome, EDS, and ME/CFS.
https://www.thecanary.co/uk/news/2024/08/13/gastroparesis/?__s=9bm2sty5aen2kqh2i4ez

#Gastroparesis
#EhlersDanlosSyndromes
#EDS
#ME
#CFS

Currently debating if I should spend $250 on trying acotiamide, a medication that is approved for postprandial distress syndrome in Japan and India.

Not that it will help with blood pooling into my stomach due to #POTS or avoid post-exertional malaise from eating more than I can tolerate, but if it can make digestion somewhat less painful…

😮‍💨

#MECFS #NEISvoid #gastroparesis

Quick update (TW: severe #MECFS, eating / weight loss / #gastroparesis issues, hospital)

I’ve been mostly stable since I started being tube fed last year. I haven’t lost more weight but haven’t put any back on either (IMC still ~14.0).

This week I had a surgery for my gastroparesis (G-POEM). It was quick and painless but I inevitably crashed. I’m slowly recovering at home now. Unfortunately, it hasn’t helped with my gastroparesis even though the results should have been immediate.

#NEISvoid

Wife developed #gastroparesis really bad & saw many specialists over the past several years & it just got worse. So bad that they were talking about options like a stimulator or a drain tube, which would be ironic because I have a feeding tube. We joked, "I would have one for input, she would have one for output."

A new #nurse practitioner determined it was her #Trulicity causing it, took her off of it &added mealtime insulin

Gastroparesis mostly gone; glucose numbers much better than ever now

15 Year Old Emma Kok Sings Voilà
https://youtu.be/KdIhq1tb8Co?si=hgF2YnhqNvvthVNX&t=33

Powerful performance by
Emma Kok, who has #gastroparesis .

#NEISvoid #EmmaKok

📢New article!

"A Systematic Review of Exocrine Pancreatic Insufficiency Prevalence and Treatment in Type 1 and Type 2 Diabetes"

https://doi.org/10.1089/dia.2023.0157

(Find an author copy + access all of my research at DIYPS.org/research!)

Or read my summary here: https://bit.ly/46OpN4J

#diabetes #type1diabetes #type2diabetes #EPI #PEI #exocrinepancreaticinsufficiency #gastrodon #gastroparesis #celiac

How unpleasant is a gastric emptying study? My GI wants me to have one.

My only frame of reference is that I've had CT scans, MRIs, and an endoscopy w/biopsies for the celiac dx.

#gastroparesis (possibly)

But of course good news can’t come without bad news, can they?

The #gastroparesis gastroenterologist reviewed the X-ray scan that the nutrition department had me do last week at the hospital, to check that my nasojejunal tube is correctly placed in my small intestine. He saw that it’s crawled back into my stomach.

That explains why I’ve been struggling lately, but also, the nutrition doctor who follows me discharged me while knowing that my tube is out of place. I’m genuinely angry.

The phone appointment with the #gastroparesis expert was postponed to today after I called his secretary back yesterday.

It went very well! He knows #POTS and agrees that #Dysautonomia is probably the underlying cause of my gastroparesis. He talked me through the potential treatments (both pharmacological and surgical) and will review my case with my #MECFS & #POTS neurologist.

What a change to be listened to, for once.

#NEISvoid #pwME #ChronicIllness #Disability