#gastroparesis awarness month

[yaminahsaini]

Nouvelle vidéo YouTube en ligne !

[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?

[thebeesbox]

Day 49 of Pride Flags Drawn as Foxes: Gastroparesis flag

[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.

[chronicillnesscaneffoffplease]

Bringing this back bc it is once again august, gastroparesis awareness month, and I am once again not having a fun time with my GI tract and am in a flare :((((((

When you forget it’s currently a “your condition” awareness month (first one diagnosed!!!) and you’re actively in a flare up,,, there is just too much happening I can’t keep up.

[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

[yellow-dress-basil]

I see all these joke posts about Dysautonomia Awareness month, which I think is coming up, like “I’m very aware of Dysautonomia”

And I 100% get the joke and think its actually super funny - and this is in no way trying to dunk on anyone

I WAS UNAWARE OF DYSAUTONOMIA

And when someone finally told me it existed 2 days ago, I realized all the different medical issues I’ve been going to doctors for and getting tests for for YEARS (literally I’m 28 and this is since I was 16) may actually be all connected and it might not be just in my head or just that I’m lazy and don’t like to stand or move.

Like my gastroparesis, GERD, Cyclic vomiting syndrome, migraines, dizziness, chronic fatigue, hormone imbalances, etc etc etc might all be one, explainable phenomena??

Like every random illness and new symptom that has popped up since I was a child might be real and connected?

So jokes aside - awareness campaigns are important!!!

[multiplicity-positivity]

Here’s some positivity for systems with gastroparesis!

Disability pride month may be over, but it’s always a good time to uplift and celebrate disabled systems within the plural community! Systems with gastroparesis may find that it’s difficult to speak up about their condition or have their voices heard and acknowledged in our spaces. This post aims to bring joy, hope, and awareness to systems with gastroparesis out there!

Shoutout to systems whose gastroparesis causes them to struggle to stay fed or get enough to eat!

Shoutout to systems who feel nauseous often or all the time!

Shoutout to systems who deal with chronic pain or discomfort in their tummy or abdomen!

Shoutout to systems whose gastroparesis has traumatized them or led them to develop their system!

Shoutout to systems who struggle to have their symptoms heard and taken seriously by their doctors and healthcare professionals!

Shoutout to systems whose gastroparesis developed suddenly and unexpectedly, and to those whose condition developed as a result or complication of another illness!

Shoutout to systems who need special diets, ample breaks in school and work, or other accommodations in order to live happy, healthy lives!

Shoutout to systems who advocate for themselves and others and try to educate others about gastroparesis, its prevalence, and how to be a good ally to those who struggle with it!

Shoutout to systems with gastroparesis who have had to manage their symptoms on their own due to being unable to afford quality healthcare!

Shoutout to headmates in systems with gastroparesis who are symptom holders for nausea, pain, discomfort, or other challenging symptoms!

Shoutout to systems with gastroparesis who are learning more about themselves and their bodies and are taking steps towards living full and happy lives!

For those who live with gastroparesis, we want to uplift you and support you however we can! Please don’t be afraid to talk about your experiences here - we care about you and we wish the very best for you in all that you do! We want to support you to the very best of our abilities!

Know that you will always belong in and be an important part of the plural community! We sincerely hope that you can find the accommodations you need, a healthcare team who understands you and takes you seriously, medications that improve your quality of life, or anything else that’s necessary for your system to thrive and flourish! Please don’t be too hard on yourself or your system, try to take it easy, and have a wonderful day!

(Image ID:) A pale orange userbox with a cluster of multicolored flowers for the userbox image. The border and text are both dark orange, and the text reads “all plurals can interact with this post!” (End ID.)

[takami-takami]

Trigger warning: restrictive eating (medical), calorie numbers, weight, emeto. LONG SRY

I will say though. Now that it's gastroparesis awareness month! My story with gastroparesis.

Today, I ate a meal with my family. I ate rice, chicken without oil, and baked empanadas with ground chicken in them. And even though my mom had to cook me a separate plate that wasn't deep fried like everyone else's, I feel so at peace.

Today when I was at the doctor's office getting a physical form signed for school, my doctor turned to me and smiled and said, "I'm not telling them about your gastroparesis for stomach issues. You know where you are. Stable!" And I genuinely lit up and nodded.

There was a good period of my life where I was only eating 600-800 calories a day. I slept propped up to aid motility, I woke up every morning with pain and would wake up in the middle of the night. I had shakes and tremors when I took my medicine. I was tired, cold, underweight. I developed agoraphobia because I was so terrified of getting sick outside and not having my room to go run and hide in.

I had anxiety attacks about my food getting contaminated, and I yelled at people who touched or moved my food like a starved animal. Like, I genuinely felt like one.

I remember when I found the first nutrition shake I could keep down. After drinking one per day, I noticed I didn't drag my feet down the steps anymore. I actually did a little skip. And I felt so much joy and told everybody I knew, I can skip again! I could dance to music for a short amount of time again!

I remember how devastated and scared I was when Orgain changed the recipe to appeal to diet culture instead of health. I went right back to that dark place.

But I pushed myself, and once I noticed my volume intake limit increasing, I knew I had to start varying my diet because my gp was improving. So I dealt with refeeding, and it was hard. But I did it!

Over the past three years, I have slowly gotten better and better, more able to tolerate more volume and more foods. I stopped my SSRI antidepressant at the advice of my GI, and that definitely helped over the past year and a half. I also healed more from my trauma, which I do genuinely think helped me as well.

Now I weigh enough to donate blood again! I went to Japan and ate at restaurants! I get crepes with my sibling and the blueberries make me a little sick but I eat them anyway because I'm not so afraid anymore! I can go out with people to eat! I can eat with my family!!!!!!

Now, I just avoid high fat, high fiber foods and don't eat raw, unblended veggies/fruit. And I'm genuinely fine. I can literally check the nutrition label and EAT THAT NEW FOOD? RIGHT THERE? AS LONG AS IT'S LOW FAT/FIBER? THAT'S CRAZY!!!!! THAT'S CRAZY.

I'm just so happy. I have no idea how I managed back then, because I'm so fucking happy now. I'm genuinely happy, and I'm not in pain every day. Now I only experience pain if I eat something I'm not supposed to. That's so crazy. Genuinely.

I am very grateful. I have never felt something more soul-crushing than gastroparesis. It's a terrible diagnosis, and no one wants to study it because it's rare and a cure isn't "profitable". But it is a very, very painful diagnosis, and the suffering is real.

I'm just happy to be okay again. We genuinely need to find a cure because no one should have to live like that.

[plague-parade]

the second august hit (gastroparesis awareness month) gp declared war on me

[exlibrisfangirl]

Surgery is scheduled for February 6th!

My neurosurgeon believes I have a condition called occult tethered cord syndrome. A tethered cord occurs when the spinal cord gets stuck - or "tethered" - somewhere within the spinal column, causing the cord to pull taut and stretch, which then causes neuropathy and nerve damage (tethered cord syndrome). Sometimes, spinal cord "tethering" can be caused by scar tissue, bone spurs, tumors, or other structural obstructions that are easy to see on an X-ray/MRI/CT scan. "Occult" tethered cord is the name for a tethered cord that doesn't have a clear cause/tether point visible on imaging... but an experienced neurosurgeon will know what to look for (e.g. a spine that is being pulled too straight, thickening of the connective tissue at the bottom of the spine, etc.). To fix occult tethered cord, the surgeon must go in and look for areas where the connective tissue holding the bottom of the spinal cord in place (called the "filum terminosum") is pulling it tight, then cut the offending strands. My neurosurgeon told me that, because I've had chronic sciatica (which was originally triggered by two herniated discs in my lumbar spine) since 2009, as well as a handful of other neuropathies affecting my legs and lower organs, it's possible I've had a tethered cord for a very long time.

My neurosurgeon has performed this specific procedure 300 times, and only 2 of those times haven't been as successful as she'd hoped (but there was still some improvement). I like those odds! Patients have traveled from 11 states - and counting - to see her... and she just so happens to: a) practice in my hometown, and b) specialize in working with patients with connective tissue disorders. 😳 I am KEENLY aware of how fortunate I am, and SO very thankful!

That being said, recovery is going to be a long road. In my neurosurgeon's words, the first couple months can be "pretty gnarly", which is expected for such a major surgery. I essentially have a functional spinal cord injury from this issue going untreated for so long, so the post-op pain is going to be intense, as all of the damaged nerves below the tether point will start to "wake up" and heal. (Think... random electric shocks down your legs, whilst constantly feeling like you're on fire from the waist down. 😬) We're hopeful that the damage to my left leg, bladder, and bowels can be reversed, at least for the most part. (My left foot has been numb for several years now, so that may be beyond fixing... but I should be able to walk without a mobility aid - when my joints are behaving, at least - within a few months after surgery!) It is also possible (but not guaranteed) that, in the long-term, some or all of my other neurological conditions (e.g. POTS, gastroparesis, peripheral neuropathy, Raynaud's Syndrome, etc.) could see some degree of improvement as a result of this surgery. I am (cautiously) optimistic!

Because recovery is going to take an undetermined number of months, and there are a jumble of other health-related and personal things going on as well, I am not going back to my job after surgery. Instead, I plan to find work I can do from home for the foreseeable future. If any of you have experience with remote work, freelance or otherwise, I'd appreciate your tips!

Also, if you're the praying kind, please be praying that nothing gets worse/goes wrong between now and February, and that I am able to survive through the end of January at work! I feel like I am dangling over a crocodile pit, clinging for dear life to a dangerously fraying rope (which is, incidentally, my spinal cord 😅)... and I can't hold on much longer!

[kokemma]

GASTROPARESIS - Emma Kok

her Story👇🏻

„I have the chronic illness 'gastroparesis' which means that my stomach is paralyzed. It's a rare disease. Because my stomach is paralyzed I can't eat like normal people do. I can eat the tiniest bits just so that I can taste some stuff. But that's also why I have tube feeding. I have two feeding pumps since was a baby. 5 years ago I got diagnosed with gastroparesis. And all those years I had tube feeding but no diagnosis. This month is extra special to me because it's 'GASTROPARESIS AWARNESS MONTH'. Because it's a rare disease there's also no attention to it. And I don't think that's fair. Because of that I started my own Foundation called 'Gastrostars. You can donate money and you can find more info about gastroparesis. I wanna get better, I don't know if I will get better. But I wanna keep faith and hope and that's why I started Gastrostars. I would appreciate if you took you're time to look at my foundation and hopefully one day we can find a solution🤍“

Her Foundation 👇🏻👇🏻👇🏻

https://www.gastrostars.nl/?fbclid=PAAab22IwrdAD8Hqz9iXktRo0sA63QexyWZmiFxVhDYmlILh8r3f4lByY48UY_aem_AdbxIVNo_bmI3_qeNGR36yIrTUARMGToS53ER4ysr2gCUXCOKhFRvyO5erBFrjEdYwc

[pinkplasticprincess]

IT'S IDIOPATHIC INTRACRANIAL HYPERTENSION AWARENESS MONTH

This is a condition that I still suffer from to this day and have to be on meds for until I die. I've found that when my medication DOES work, I have a much better quality of life, because the IIH exacerbates all of my other chronic illnesses for some reason, including Ehlers Danlos Syndrome, general chronic pain, etc. It even caused me gastroparesis-like symptoms that went away after I went on the medication the first time. I was actually able to work an 8 hour job with proper treatment, but currently my meds need an adjustment and I am unfit to work again in the meantime. That's how big of a difference this condition makes for me! The only way to diagnose it for CERTAIN is with a spinal tap, of which I've had two. Because I also have Ehlers Danlos Syndrome, both of my spinal taps had complications resulting in cerebrospinal fluid leaks. I also requested bupivacaine instead of lidocaine since studies show it's more effective on EDS patients than lidocaine, which is notorious for not working on us.

The day I got diagnosed was actually one of the happiest days of my life because I had indisputable proof that something was wrong. The opening pressure in my skull was 37. THAT'S BAD. Around 20 is normal.

More recently I suspected my pressure was rising again and my doctor was in denial and wanted to take me off of my medication entirely because he thought I didn't need it anymore. So I opted for a spinal tap to prove him wrong. My opening pressure was 35. I was right again.

Now I have to wait until the end of the month for him to even consider increasing my medication because he decided to put me back on the old dose that isn't working well enough.

Because of this condition, there are times I can't even play video games with my friends because of severe motion sickness. We're warriors fr

[cannabiscomrade]

It’s Gastroparesis Awareness Month, my birthday is on the third, and I have to pay $802 to COBRA so I can’t afford to celebrate my birthday *sad clown noises*

$forcewielder if anyone wants to help get me a lil birthday treat

[nursingassistantsrock]

Gastroparesis Awareness Month: Shedding Light on a Misunderstood Digestive Disorder

Title: Gastroparesis Awareness Month: Shedding Light on a Misunderstood Digestive Disorder August marks Gastroparesis Awareness Month, an important time to focus on a chronic digestive condition that affects millions worldwide yet remains largely misunderstood. Gastroparesis, often referred to as delayed gastric emptying, is a complex disorder that impacts the normal functioning of the stomach…

[mososimos]

Observing Gastroparesis Awareness Month in August

Gastroparesis Awareness Month aims to educate people about the symptoms, causes, and treatment options about gastroparesis. Gastroenterologists and specialists can rely on outsourced medical coding services for claim submission.  https://www.outsourcestrategies.com/blog/august-is-gastroparesis-awareness-month/