I am 100% anti-diet culture. Militantly. That is one of the many things that makes gastroparesis piss me off so much. Every time I have to buy something that is clearly marketed to dieters, a little piece of my soul dies.

#HAES #gastroparesis #chronicfatigue #disability #AntiDietCulture

I miss spoons almost as much as I miss having functional brain cells. Saving everything I have to hang with my niece in a bit. But it leaves me waiting unable to do anything lest I use of of my precious brain cells. Malnutrition truly sucks.
#gastroparesis #StarvingForACure #NEISvoid

Gizmodo: Makers of Ozempic and Mounjaro Sued Over Allegedly 'Downplaying' Severe Side Effects https://gizmodo.com/makers-ozempic-mounjaro-sued-downplay-side-effects-1850704899 #glucagonlikepeptide1receptoragonist #antiobesitymedication #glucagonlikepeptide1 #healthmedicalpharma #elilillyandcompany #jaclynbjorklund #peptidehormones #gastroparesis #tirzepatide #semaglutide #novonordisk #elililly #diabetes

📢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

I am looking for help specifically from my #chronicillness peeps here. I have #gastroparesis and don’t really eat by mouth. I also have no energy and we are super covid cautious. Our lives are very small these days.

And…my spouse and I will be celebrating 25 years together in a couple of weeks. And I want to commemorate with something special. Any thoughts on how to mark a special occasion when you can’t eat our go out?

#NEISvoid

I asked the radiology department of the hospital for a copy of the X-ray scans that were done to check the positioning of my nasojejunal tube.

The scan on the left was taken the day after it was placed, and the one on the right 2 weeks later when I had my follow-up appointment at the nutrition department.

It isn’t hard to see that the tube has moved back into my stomach, is it? They discharged me regardless.

#MECFS #pwME #Gastroparesis #POTS #Dysautonomia #NEISvoid #ChronicIllness #Disability

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)

Is there anything more #chronicillness than a thread devoted to everyone's least favorite symptom? It doesn't need to be your worst, just the one you like least.

Well, there just was such a thread in one of .y #gastroparesis groups.

I have been too quiet here. I am malnourished and feeling like just a shell of myself, so reading isn't easy. But I am tired of whining into the void, so I am trying to reconnect here.

#NEISvoid #chronicillness #gastroparesis

Isn’t it fantastic that, after having become severely malnourished from #gastroparesis, the weight that you put on from #refeeding is mostly fat mass stored in the abdomen* that is linked to obvious health risks, on top of those you have from being bedridden by #MECFS and #POTS?

(Of course, being malnourished is without a doubt much more of a concern and everything should be done to put enough weight back on. But still, it sucks to be sedentary…)

* https://pubmed.ncbi.nlm.nih.gov/30806320/

But of course good news have to come with bad news, don’t they?

The #gastroparesis GI doctor also reviewed the X-ray scan 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 doctor who follows (and gaslights) knowingly discharged me while she knew 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

I waited three months for a phone appointment with the top #gastroparesis expert / gastroenterologist in the country… but he forgot to call me.

I rang his secretary twice last week to confirm the appointment. I was supposed to see him at the hospital but I had to switch over to a phone call because none of the 25 ambulance companies I contacted would transport me there (too long of a trip).

Feeling gutted.

#MECFS #pwME #Dysautonomia #POTS #NEISvoid #ChronicIllness #disability

This feed formula really is annoying.

I have to flush my tube with water every 2 hours or so or it inevitably clogs. When it does, I have to keep a syringe of warm water attached to it for anywhere from 30 minutes to 2 hours until the clog softens up and breaks apart.

I can’t push hard on the syringe or the clog will implode and rupture my tube, like last time.

#MECFS #pwME #gastroparesis #POTS #NEISvoid #ChronicIllness #disability

Also, the doctor switched me from a feed formula with 1.5 kcal/mL to 2 kcal/mL. It’s denser so I struggle to digest it even more, my small intestine is working really hard to get it moving.

This is a repeat of what happened when they placed my tube in March, but they won’t listen.

And this thicker feed keeps clogging my tube because it has a fine gauge (the 1.5 kcal/mL formula was already problematic). 🙄

#MECFS #pwME #POTS #Dysautonomia #gastroparesis #NEISvoid #Disability #ChronicIllness

She hopes that the renowned gastroenterologist who specializes in gastrointestinal motility disorders (including #gastroparesis) whom I’ll have a phone call with next week will be helpful.

So it’s not just me thinking that I’m being gaslit…

#MECFS #pwME #POTS #Dysautonomia #NEISvoid

2/2

and that I’ll go back to losing weight (so, square zero) if I don’t have tube feeding to help prevent that. My GI tract isn’t going to magically reset itself…

Just frustrating and worrying all around.

#MECFS #pwME #POTS #Dysautonomia #gastroparesis #NEISvoid #ChronicIllness #disability

I’m at the hospital today for the nutrition follow-up that I was supposed to have 2 months ago.

They’re worried about my weight loss but still won’t do anything besides putting me on treatments I’ve already tried (erythromycin and Mestinon).

They’re also saying they’ll remove my nasojejunal tube once I’ve regained enough weight because that should improve my digestion. I’m so tired they don’t understand that my #gastroparesis is linked to #dysautonomia / #POTS, not weight loss (alone)

1/2

Right, I’m at the hospital. They weighed me in at 44.8 kg (BMI 14.0), which sucks.

They’ll install the nasojejunal tube today but the X-ray to check whether it’s correctly placed might be tomorrow. I’m getting out tomorrow anyway, thankfully.

#MECFS #pwME #NEISvoid #POTS #gastroparesis

It turns out that the nutrition unit doesn’t have any spare bed at the moment, even though the doctor told me one would be freed today, so they’re leaving me by the roadside. My only other option is to get my feeding tube replaced is to go to the ER / A&E.

#MECFS #pwME #NEISvoid #gastroparesis