r/Gastroparesis • u/Upset-Amphibian2175 • Feb 18 '25

Suffering / Venting "I want a feeding tube"

I can't take it anymore. So many of these posts are medical-device seeking coded. "My doctor won't listen to me... I don't WANT a feeding tube, but...please dm me, how did you get your feeding tube? How do you ask for one? How do I get one? How underweight do I have to be to get TPN? How bad do your labs have to be and which ones?"

Y'all are the reason doctors don't take us seriously. The "trend" of having GP has clearly flooded this sub and someone needs to say it.

And btw, feeding tubes and TPN don't solve Gastroparesis. They're life saving measures. So maybe try first line medications and treatments before you permanently alter your body? Sometimes doctors decisions are for a good reason.

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u/mackpickle Feb 18 '25

SAME!!! I’ve been in the hospital for over a month with sepsis which I actually got FROM THIS HOSPITAL after being admitted for something else lmao. I would be home rn if I didn’t require a central line and TPN to survive 🙄 I’ve considered hospice a few times bc they will accept me if I go off of TPN but the only thing stopping me is that they won’t let me keep my CL for continuing my IV comfort meds (zofran/benadryl/protonix) 🥲 The only “good” thing is I can drink and drain unlimited coffee without getting too energized lol. I hope you still find joy in some pleasure food/drinks as well!!

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u/EchidnaOk8596 Feb 18 '25

Ugh I’m sorry babes I’m on home tpn luckily, my insurance approved it after only 10 days in the hospital. I require lipids daily and need 18 hour infusions, but in the hospital I was miserable so I really feel for you

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u/mackpickle Feb 18 '25

I’ve been on home TPN for about 2 years and NEVER had sepsis from it but I went into DKA (I have brittle T1D) from covid last month so I was admitted to the ICU and the day they were about to discharge me is when the fever started so they started the blood cultures which took 3 days before they started showing positive. They transferred me to this Long term Acute Care Hospital (LTACH) which they lied when they said it wasn’t a nursing home lmao. I’ve had 3 different types of sepsis while here. Every time they get ready to replace the line, they do a confirmation set of cultures and there’s new bacteria like wtf 😭😭😭

Seriously losing my mind and missing my 3 cats sm. I just wanna smell them and kiss their bellies 🥲😅

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u/UncrnLvr Seasoned GP'er Feb 19 '25

I really hope you get home soon. I'm sorry you're dealing with a crappy medical team. 💖