#gastroparesis awareness

[theresstillgrowinghere]

I don’t often find I have much to say during chronic illness awareness months anymore. I’m tired. My words feel tired. I don’t feel like I have anything new to add. Sometimes I worry though that that in part comes from my having been in various digital chronic illness spaces for almost a decade. Of course it feels tired to me. There are things that rattle around my brain that feel so obvious and commonplace (and that have been said much more eloquently by others before me) but may still be worth expressing, just judging by the ways people in my life haven’t been able to understand

So for gastroparesis awareness month this year, there are a few things I want to note from my experiences (tw for food/eating, weight without numbers, medical trauma)

1) My relationship with food is so scarred and multifaceted. It is messy and thorny, conflicting and complicated

(I am scared of food. I miss food. I hate food. I want to eat so badly. I never want to think about eating again. Tell me in detail about how it tasted. I love food. Please don’t ask me to join you for a meal. I don’t want to miss the communal aspects of eating. I feel so disconnected and other and separate just because I don’t eat. Sometimes I do try to eat and it makes me sick. Don’t comment on it, please; it’s not helpful to scold or encourage - I feel shame either way)

2) There is no cure. There is only management. I think people understand this in theory more than actuality, because when I say this I mean please, please stop expecting any management option to be The Thing. Please don’t expect something to offer substantial improvement, even if it is a life-saving dramatic change. As I have tried to explain to people in my life, those types of interventions are often complicated and risky and, in our broken healthcare system, very difficult to access until the situation truly is dire and life-threatening. Which can mean that the body takes significant damage before getting there. Sometimes by the time you access the intervention, that damage is irreversible and the goal is just to stop further decline. It’s not making me better; it’s keeping me from getting worse. For some reason that’s difficult for people to understand

(But sometimes people do find what for them is The Thing or are The Things, and that’s an important piece of the whole picture. The problem is the persistence of unrealistic expectations among people around us)

3) My relationship with healthcare is vital but fraught and heavy. I rely on it tremendously just to stay alive. It is also my only in-person access to the world and to people, which is a weird kind of mindfuck. But I am also deeply afraid of it after so many years of trauma. I am terrified of hospitals and medical professionals. I’m sorry for the way that fear makes me irrational, makes me assume, makes me protect myself. I know so many medical professionals are so caring and kind, but it is very, very hard to go into a medical setting trusting that that will be the case

4) There are some things I wish truly were obvious. Like don’t comment on someone’s weight, ever. Don’t say you wish you could “have a little of that” to change your appearance. Don’t try to convince me to “just try to eat a little.” Trust that I know my body best. Don’t offer me unsolicited advice or recommendations. Don’t say “when you get to be my age…” because I will point out that, based on the amount of damage to my body already, it is very possible I will never reach your age. But more to the point, I am not too young to be this sick. It happens

Anyway, these are my 3am-notes-app, camped-out-on-the-bathroom-floor thoughts. It is also important to note that they exist in the context of my gastroparesis being born of and coexisting with my other chronic illnesses, and they all become so deeply entangled

Wishing everyone well. Hoping your August is kind and gentle

To everyone with gastroparesis (and other digestive disorders, really), I’m sorry your tummy hurts, and no, you actually don’t need to be very brave about it. As I heard someone say recently in a different context but definitely applies here as well, “We weren’t born to be fighters. I don’t want to be brave. I want to be okay.” I just want all of us to be okay

[thebeesbox]

Day 49 of Pride Flags Drawn as Foxes: Gastroparesis flag

[chronicallydragons]

could someone pretty please explain to my autonomic nervous system that we are not actually under attack or being chased by tigers when we...*checks notes*...are sitting up?

[mandana-the-service-pup]

Sometimes when my low blood pressure or low heart rate is flaring up I get this overwhelming urge to go on a ridiculous adventure.

Like I’m barely able to walk and yet it sounds like the most wonderful thing in the world to cook a feast from scratch, drive an hour to the aquarium or volunteer at an animal shelter for a day. Of course I’m not able to do any of this but it’s tricked me in the past and I’ve ended up in some sticky situations. Now I’m able to recognize when it happens by writing it out or texting Hubbins about it bc it really does sound absurd given my current state. Now when I get the sudden urge to do something that is a lot more intensive than my regular activities I immediately “hit the breaks” and evaluate why I feel that way (and it’s never bc I’m actually feeling better). I think my brain is just desperate for a dopamine hit when it’s not getting enough blood flow.

[chicago-geniza]

My brain was like "I want a drink" but I examined the impulse and I do not actually want a drink. What I want is for my STOMACH to stop HURTING

[noagskryf]

I don't know who needs to hear this* but a reminder that having lots of support needs, having a carer/helper, or having to do "embarassing" stuff to literally be alive, and setting boundaries don't take anything from your self worth.

*it's me. i need to hear this.

[aelianated-star]

Being loaded into an ambulance: Sorry am I ruining the vibe?

[skellysstruggles]

My Battle With Connective Tissue Disease

Hi, my name's Alex, and this is my blog on Ehlers-Danlos Syndrome, and the life I live with it. I explain all types of procedures, treatments, problems, and woes of life with a connective tissue disease. If you or a loved one have any experience with a chronic illness, or if you are simply interested in the workings of an EDSer, follow me!

[themermaidpirate]

I lived bitch

[skellysedsbattle]

Welcome to my Blog!

Hi! I'm so happy to have all of you here. On this blog, I will document my experiences, troubles, treatments, interventions, and life with Ehlers Danlos Syndrome. Secondary to my EDS I have gastroparesis, dysautonomia, ASD, hip dysplasia, OSA, Iron Deficiency Anemia, POTS/OH, and more. I display my life with these disorders in order to raise awareness for EDS in the public eye AND in the medical feild!

[dissociacrip]

shrimp has protein

eat shrimp alfredo

like 1hr later i feel like i'm fucking starving. which is a new thing

excess acid could be irritating stomach lining so i may not even be actually hungry

or i might have undiagnosed diabetes or something

which would be worse than just gastroparesis for me

but there would be something uniquely fucked about either diabetes or gastroparesis while i'm food insecure

[sashabunnie]

TW: mentions of medical trauma and images of medical items(needles primarily)

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*GASP* sashabunnie posting a piece of art that isn't an original character? That has deep themes and dark images without using dark humor? What has this page come too? 🙀

In all seriousness though, I thought I'd create an art piece that speaks to me. An art piece that I hope speaks to others.

The art piece in question is about chronic illness, how draining it is while those around you(specifically doctors, nurses, and other medical professionals), talk about different treatments, medications, etc. and how much it'll help. But in the long run, this is your life. It is what it is and what it will be.

Diseases with no cure, but not deadly enough to find one.

Diseases that are rare enough that you get told that it's "not real" or that it's "too rare to happen to you", but just common enough that people start saying it's a "fad" or "trend".

While treatments may be given, doctors appointments are attended too, and ER staff get "used" to you coming in, you yourself are beginning to feel sick and tired of being sick and tired.

But this is your life. You can't escape it. There's no way out.

Guys, gals, and nonbinary pals, I present to you:

"Sick and tired of Sick and tired"

(progress proof since I can't figure out how to get a time lapse on Krita):

Sketch: Before details/shading:

I hope you enjoy this piece. It took me around 5-6 hours to complete. I hope someone will see this and feel seen by it.

[yaminahsaini]

Nouvelle vidéo YouTube en ligne !

[cannabiscomrade]

hi there, i want to thank you for talking about gastroparesis and sharing your experiences with tube feeding. i may or may not have gastroparesis as well, my gastric emptying test was inconclusive, but my stomach issues are pretty disabling and i have wondered if tube feeding might someday be necessary for me. hearing about your experience makes it a lot less scary sounding! i wonder if you would be comfortable sharing a little more about how tube feeding has improved your health, and impacted your daily life (for better or worse)? are there things you can do now that you couldn’t have done before tube feeding, or vice versa? feel free to take your time answering, or not answer at all if it’s too personal. either way, i appreciate you!

I'd love to talk more about it!

I can empathize with your GES results. They can just end up being just a snapshot of your entire experience, and unfortunately they can just catch you on a "good" day where your emptying times are better. I know some people will intentionally trigger flares to get more accurate numbers on their study.

I'll preface with a little more information about me. I was misdiagnosed for 16 years with Cyclic Vomiting Syndrome and dealt with that and other vague GI diagnoses like GERD and IBS-D episodically and it gradually got worse over time. I was never given a GES until 2022. After I got pregnant and gave birth in 2020 I drifted into this pattern of daily morning vomiting, then I went into a flare last August that I never left. I was diagnosed with gastroparesis in Nov 2022, caught covid for the first time at the end of Nov, and got my tube Jan 2023.

Tube feeding has significantly improved by health. I was slowly dying from starvation ketoacidosis in December 2022. But even when I was eating orally I struggled with severe gastric malabsorption for years and often felt symptoms of malnutrition and saw minor malnutrition on labs and never understood why because I was eating, but because of fatphobia I was never given a GES and I was never taken seriously until I lost a significant amount of weight. In the most severe moments I was having constant diarrhea and vomiting and I've had so many hospitalizations due to dehydration and vomiting alone when I was eating orally.

I'm about 7 months in and I'm getting about 1300-1500ish calories a day, which is not my goal and it needs to be increased. But the difference with it being in my jejunum is that I'm absorbing 100% of those calories and it has helped my energy and my immune system so much. I've been able to significantly slow the weight loss while we investigate the root cause of my gastroparesis, as well as test for intestinal dysmotility. My hair is growing back, my nails are stronger, and I'm having general improvement of my IBS-D.

That being said, being on feeds and fluids, especially continuous feeds, it does impact my lifestyle a lot. I need accommodations at work. I can't let my feeds get over room temp or fluctuate temp too much. When my bags are full and it's in my backpack I'm carrying 2L of liquid and a pump, plus an additional medical bag with supplies. I even have to sleep at an angle to prevent aspiration. And the fun of stoma care. Cats also seem to have a taste for formula and tubing, which has banished my fur children from our bedroom at night. My medical supplies take up half of my dining room. It's certainly a major life change.

But without all of that, I would be dead. For a lot of us, being without alternate nutrition means either death or severe suffering from symptoms of gastroparesis. This is my symptom tracker for vomiting over the past year. You can see the stark difference between July-December and January-now.

This alone was enough for me to justify for myself that a medical device was necessary. Even without the starvation, I still have two hernias from vomiting and developed chronic gastritis secondary to the GP.

The one thing with tube feeding is that your digestive system is like a muscle. If you don't use it, you lose it. And I've definitely noticed a decline in my capacity to tolerate anything in my stomach for long, even liquids. I'm grieving this and learning how to live with this because there isn't an alternative for me at this moment. I'm still trying, I use the gastric port to drain a lot just to keep what little of my stomach's function it still has.

[mandana-the-service-pup]

Resting up for a whole week of appointments. Nothing makes me feel more disabled than having scheduled appointments I have to keep no matter how tired or painful I feel.

[autistic-shaiapouf]

Spinach, kale, lentils, probiotic yogurt, less fried foods, fruits full of water

Hm fascinating <- he is eating a pastry and drinking lemonade