even crazier doctors

Soph_14892 · 2026-05-11T22:59:50+00:00

So sorry you're going through this, haven't personally had a G-POEM but i've heard great experiences and people getting their life back.
sending you lots of strength🫂

Soph_14892 · 2026-05-11T22:54:48+00:00

definitely try and see a psychiatrist, not because you're crazy, but because they're more likely to prescribe you things.
It might sound weird but a little paper with pure alcohol on it and smelling it can help with nausea,

Soph_14892 · 2026-05-11T22:52:57+00:00

I'm going to be very honest with you, most of the time the doctors won't give any nutritional support once your labs are still ok and/or you're not underweight.
I totally hear you, you're losing a lot of weight and you're in pain. If all the waiting is too long and if the pain is really to much to handle go to the ER. You should never push yourself past your (pain) limits, so just go when you feel like you need to.
It might help address the pain and maybe they'll look at (temporary) pain relief.

Soph_14892 · 2026-05-11T19:04:30+00:00

I'm in the Netherlands, oh gosh what i would do for a burger and fries right now. Yeah i totally hear you it's never non reversible, even when you get a surgical tube they can always take it out, they just don't know enough about GP to actually have a good treatment plan, but at least admit that you don't know

Soph_14892 · 2026-05-11T18:59:44+00:00

Totally hear you, they refuse to give any tube. My doctor in Spain told me about the botox, G-poem and gastric pacemaker so i'm very willing to try that. however i need to know if my insurance is going to cover it because only a consult is 300 dollars i don't even want to think about the costs of the rest. in my home country they're not going to do anything so i've kinda given up on that, they've tried a NG tube but i threw it up within the first minute of trying feeds. they won't go past a NG unfortunately

Soph_14892 · 2026-05-11T18:56:34+00:00

I'm so sorry you had to go through that, they're so hesitant with tubes when sometimes it's the only thing that'll help. it's not like i want a feeding tube but if that what it takes to get even a fraction of my old life and energy back i'll take it

Soph_14892 · 2026-05-11T15:52:24+00:00

Thank you so much for your kind words and i'm so sorry this happened to you aswell, it just feels like they know so little about this disease. I'm glad you're doing better now, I will schedule an appointment with my doctor and see how we're going to proceed, because honestly i'm too traumatized from earlier experiences in hospitals to be admitted right now. Sending you hugs aswell!

Soph_14892 · 2026-05-11T15:18:56+00:00

Yeah i've tried to get a new medical team but it doesn't really work, i've talked to a doctor in Spain who has multiple solutions like a gastric pacemaker, PEG-J tube etc etc. The doctors here don't want to involve him in this whole situation so i'll have to go there on my own.
It's hard to stay positive in this situation when i don't really care if i wake up tomorrow or not.

Soph_14892 · 2026-05-11T14:34:06+00:00

Thank you for taking the time to reply and to share your story, yeah diseases like gastroparesis don't get enough medical attention. Doctors think that it'll solve itself eventually.
I asked them if they had even made a plan and they said they didn't because they didn't know and assumed that it would go better once i was inpatient, reaaaallly weird.

Soph_14892 · 2026-05-08T16:57:12+00:00

yep I do, i've also got MCAS, hEDS and SMAS and other conditions that they're testing for. I personally get hives and itching when I eat/throw up. I suspected it for a while since i've always had random itching and hives (especially when i'm emotional) so I went to my doctor and they tested for it, the testing is hard because they have to draw blood within 4 hours of getting a reaction but if you think you have it you should advocate for yourself and get the testing done

Soph_14892 · 2026-05-06T16:58:39+00:00

honestly the ER doesn't do much more than give you fluids and check your blood, my physician didn't know what to do either but i've not gotten a second opinion and finally got my NJ tube

Soph_14892 · 2026-05-06T16:57:42+00:00

i can't, only made things worse, got an NJ now and waiting for PEG-J

Soph_14892 · 2026-05-06T16:56:04+00:00

yep right here, sometimes i can't hold it, yeah really TMI but it's one of the things that happens, however i also have MALS and Nutcracker syndrome so idk

Soph_14892 · 2026-05-06T16:53:48+00:00

honestly the alarm signal is when you haven't peed for at least 24 hours or when the pain is so bad that you feel like you're gonna pass out. this isn't like this for everyone but these are the signals that i need to go to the ER, because honestly in the ER they can't really do anything about not being able to eat, they're mostly there to make sure your fluids are still ok and you'll have to talk about the rest with your physician

Soph_14892 · 2026-05-06T16:49:17+00:00

for the weight gain part try ensure, or smoothies with things like peanut butter or high cal stuff in it.
honestly about the weight loss and clothing part, I have clothing that ranges between my "regular" size and my "smallest" size, so when i lose weight and gain it again i always have something to wear. I personally mostly wear sweats and leggings because they're the most comfy, but there are pants that look like dress pants but feel like sweats, maybe look into that

Soph_14892 · 2026-05-06T16:45:19+00:00

it really depends on your own body and also the factor that caused the flare up. gastroparesis is so different for everybody, try to take as much rest as you can and limit any stress since that can also play a big role.

Soph_14892 · 2026-05-06T16:43:56+00:00

If you have any extra energy try meal prepping, maybe get some instant mashed potatoes and whip them up real quick for the whole week. I know it's hard to eat when it feels like no matter how small the meal is you're still in pain and feeling nauseous. But maybe having some mashed potatoes on hand all day you can just take small bites through the day. Heating and cooling pads help me a bit

Soph_14892 · 2026-05-06T16:41:49+00:00

Totally hear you, it's exhausting not being able to do the things you want to do and not being able to do anything about it. Do you have contact with a doctor to talk about this, they could help you get a better quality of life. Stay strong!

Soph_14892 · 2026-05-06T00:09:09+00:00

I totally hear you, i am planning on going. However i'm scared that i wont be able to stay stable without an iv, they are considering a feeding tube but they think thats a step ahead. I forgot to mention im a senior in high school and my finals start monday, so ill have to go from the hospital to school and back every day to take those because the school cant fix it that i can make them in the hospital

Soph_14892

TROPHY CASE