StarrySouls

175d

at what point does someone with gastroparesis get a surgically placed feeding tube? used to have a NG a few times but due to it triggering severe nerve pain in the entire side of my face into my teeth and eye it was removed. i weighed more when i had the tubes originally placed (140-120lbs but i don't remember clearly, i used to be 200lbs around the time my GP started to show symptoms. im also 5'7/170cm) and now currently i'm 113lbs and losing. i'm always so exhausted and achy, i don't have a lot of energy to do much anymore and i think it's because im malnourished mainly and i cant stand the thought of having a tube in my nose again, i have medical ptsd from all those times getting NG tubes and i just don't know what to do anymore

Ehlers-Danlos Syndrome (EDS)

Loss of weight

Malaise & Fatigue

Gastroparesis

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  • inflamedfuturern

    175d

    You should ask for a referral to a general surgeon so they can do a consult appointment to discuss this

    • StarrySouls

      175d

      my mom said she's going to help me with that, i've been waiting for appointments for some things for months now, i wish waiting didn't take so long

  • katealexander

    174d

    i have a surgically placed j tube after several nj tubes and tpn. i would definitely recommend getting a consult with a surgeon to discuss your options. enteral and parenteral feeding is so complicated especially when you have other health conditions that make setting it all up more difficult. the only piece of advice i can really give is to advocate for what you think is best for yourself. at the end of the day we know ourselves and our bodies better than anyone else, medical degree or not. i know how frustrating and depressing it can be to not be able to get the nutrition you need and not have anyone actively looking for the best option. ive bern there and still am sometimes. sending you good energy🤍

    • StarrySouls

      174d

      hopefully i'll be able to get an appointment quickly, lack of nutrition has been taking its toll on me for too long now. thank you 💙

  • FancyFace1971

    172d

    U need a feeding tube in your stomach.

    • StarrySouls

      167d

      that's what my mom is thinking is gonna happen, i just hope the recovery is okay and i dont need to feel any worse before getting nutrition i need

      • FancyFace1971

        165d

        hello, with my experience have them check your pancreas too because my gastroparesis has caused me to have severe pancreatitis. And I didn’t even know I had it. Good luck to you sweetie

  • Slothgirl

    158d

    I have a g j tube surgically placed I love it that way I can do meds and tube feeds in my j tube but I can vent my g tube so grateful for my tube

    • StarrySouls

      147d

      i loved how i could drain extra bile or just gas when i had my NG it made my nausea stop almost right away when i got all the gas out, and i ran feeds slowly through the day so my stomach wouldn't get too full and i wouldn't feel as sick, i had a LOT more energy just even a week of having the NG, sadly my nerves are very sensitive and i couldn't have it in my nose any longer. my mom is going to mention a GJ at my next appointment

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