#gastroparesis awareness

[thebeesbox]

Day 49 of Pride Flags Drawn as Foxes: Gastroparesis flag

[cfs-crohns-colitis-warrior]

August is Gastroparesis Awareness Month.

I don’t have Gastroparesis myself, but I met a couple of girls in the hospital when I was there for my Crohn’s. They are such nice people, and they are the strongest and toughest people I know with having to put up with this awful illness.

Gastroparesis is an invisible illness that doesn’t have much awareness. Please help make more people aware of it and support those who have it!

Much love to my girls with Gastroparesis and love to anyone else who has this awful invisible illness 💚💚

[mandana-the-service-pup]

One of my biggest tips for people with chronic illness…get yourself a nurse practitioner.

I told my nurse practitioner what happened at the ER and she immediately got ahold of her hospitals Cardiology department and bumped my appointment up three weeks so I could get in tomorrow.

I hear all the time from both doctors and patients that some how nurse practitioners are able to hang on to their compassion & empathy and believe me when I say that’s exactly the type of person you need fighting for you in the medical community.

[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

[chronicbethany]

[aelianated-star]

SOMEONE TELL ME WHY LIQUID NUTRITION/TUBE FORMULA AND HOMEHEALTH COMPANIES MAKE THEIR PACKAGES/BOXES SO DAMN HARD TO OPEN?? Like your customer base is malnourished /chronically ill/disabled people and y’all had the AUDACITY to make the boxes so hard to open that even my able bodied, male family members struggle to open it?? I know it’s expensive (god bless insurance actually paying for something for once bc there’s no way I could afford over 9 boxes a month at 72 dollars a box) and they’re trying to prevent theft, but I can guarantee that nobody who sees these shipments of giant liquid nutrition boxes is going to try and nab it.

[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.

[spooniestrongart]

[theatre-avengers]

Hiya

I’m doing my EPQ project on ‘The Unspoken Truths of Chronic Illness’, as a chronically ill teenager.

As part of my primary research, I am conducting a survey - to be completed by both able bodied people and people with chronic illnesses.

It would be very helpful for me if you could complete and share the survey, and I would be endlessly grateful.

The survey is completely anonymous, all you need is a Microsoft account, but I will not see who you are in your response.

Thank you so much :)

https://forms.office.com/Pages/ResponsePage.aspx?id=KbjZ4RaYVEydnK3i2OOqbtgQ7n_Hu4BEmwZJDCRgIO1UQ00zV0NPOVJSMVRGVkU2MDRLRFhZNzIzVC4u

[autistic-shaiapouf]

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

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

[chronicillnesscaneffoffplease]

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.

[spoonful116]

Dear ER doctors (in general),

Please learn more about us

- Disabled and chronically ill people

(Shoutout to those who have/are)

[mandana-the-service-pup]

My health has been declining rapidly, so I’ve got a lot of appointments to schedule today.

I’ve got two ultrasounds and a biopsy to schedule all to check different organs that have been concerns in the past.

I’m titrating down 1/8 dose per month on an important medication and the withdrawal is still kicking my butt.

My autoimmune hypothyroid has gotten worse for the first time in many years and requires a dose change.

My pain is back to where it was before I started taking my immune regulator back in like 2015. ((Washing my hands feels like pouring a bucket of sharp rocks on them 😖))

My joints (especially in my fingers & back) are swelling up and aching often enough to concern me.

My daily heart rate usually caps out around 140s-150s but just recently it’s been getting to 170-180s. When that’s not happening then it’s my systolic blood pressure that’s hitting 150-160s

I feel like my body is failing me and all I can do is live life from one doctor appointment to the next. It’s hard being chronically ill. If an average person felt the way I do they would go to the emergency room and be taken seriously, but bc I deal with this every day I’m expected to just manage it myself?

[simplelittlebrowngirljae]

Dating with a chronic illness....

I've said it once and I'll say it again, date with chronic illnesses is almost impossible. I decided to try again and well, my results have been the same....either being completely disrespected or totally ghosted. I don't think my plus one is out there. And I'll be honest, it breaks my heart.

Once upon a time, dating used to be kind of easy. I was thin and pretty and the right type of man actually came around me. I had meaningful conversations and things kind of went somewhere. But after my divorce things got harder. And I got older and sicker things progressively got harder and well let's just say the pool of men was infested with algae and piss. Like I just can't believe what is coming my way now.

I get men with hundreds of kids or who don't have goals or careers or who are abusive( verbally and mentally), or who are very judgemental or who just ghost me. And well I will be honest, it hurts. It has made me question who I am amd what I am doing.

Allow me to explain. I know I'm not as thin as I used to be, I'm working on that, but I still have a great personality and many things to bring to the table. But apparently that's not good enough. The constant rejection has made me question my essential being and things like my approach to conversation, my reactions to certain things and what I reveal in conversation. I just don't understand anymore. I try and try and no matter what I get ghosted or rejected, most often times after they find out about my chronic illnesses or they when they find out I have a career ( which is quite odd). I have tried many ways to present it all and well each time it just doesn't work out.

At first it didn't hurt too bad but now the pain is deep. Some days I want to cry. I just want a fair chance like anyone else. I want a chance for that first date, a chance for good conversation and magic. But sadly I'll never get it. My guy friends try to make me feel better by saying it's not me it's them but I know the reality...it is me.

I try to paint a brave face like it's okay but I realize that I do deserve love and special things. I do deserve someone to go out to dinner with and to special events with. But, alas I guess I won't have that. It's just me, myself and I. I guess I've met my match. It's over now.

So what now? I'll wipe my tears, hold my head up high and find a new path. I'm sure there is some greater calling and purpose out there for me. One that doesn't require a mate. So here's to the new journey and the success it will bring.

[chronicbethany]

With my love seeing The Lion Kin

[aelianated-star]

The fact that I passed out while working, had a low blood sugar episode, got a 72 hour video EEG placed, and then reached close to a HR of 200bpm from CRAWLING up the stairs and just walking to the bathroom? Foul.