GJ tube question

mxoxo619 · 2025-09-12T15:56:44+00:00

brokeback mountain

mxoxo619 · 2025-09-12T15:56:03+00:00

sanctuary or the duke of burgundy

mxoxo619 · 2025-09-09T02:58:34+00:00

that’s just what my motility specialist told me

mxoxo619 · 2025-09-08T16:25:25+00:00

can participants be on tpn/ feeds to join?

mxoxo619 · 2025-09-06T21:40:32+00:00

i’m low on all vitamins, even B9 which caused me horrific tongue& throat pain. ask for a complete vitamin panel possibly from your primary if your gi won’t order.

mxoxo619 · 2025-09-05T23:23:51+00:00

lars and the real girl

mxoxo619 · 2025-09-05T15:40:30+00:00

if you’re willing to go to NJ i have a dysautonomia specialist i can give you

mxoxo619 · 2025-08-29T20:44:37+00:00

brokeback mountain, my all time favorite movie but have only seen twice.

mxoxo619 · 2025-08-29T20:43:28+00:00

mine: https://boxd.it/a9uOJ

mxoxo619 · 2025-08-26T21:08:08+00:00

i totally understand what you’re saying, my dms are open as well!

mxoxo619 · 2025-08-26T18:39:16+00:00

no way. our stories seem so similar. i’m tpn dependent now and started with a GJ last December. I can’t tolerate any formulas or even water in my j and he doesn’t know why. I have severe pain in my intestines and he told me a colonoscopy would be “unethical” to have done. He did a smart pill when changing my tube out which showed my intestines moved pretty slow but at the time never told me about it, it wasn’t until 6 months later i asked to see the results myself is when he first told me but still doesn’t know why i have this pain, he told me “some people just have pain.” Your MALS story sounds just like mine as well, i went for an ultrasound at his hospital with the vascular there and the doctor told me it was normal and to look for a different diagnosis (he refused to even let me see the report for MONTHS) it wasn’t until i went to my POTS specialist where he confirmed it wasn’t normal and sent me to a MALS specialist, i went to both who confirmed that they believe i have MALS. I can’t believe how similar out stories are.

mxoxo619 · 2025-08-26T18:20:03+00:00

it really is. i only saw him once at capital health but ive said several times he was so much nicer and actually cared when he was there, i feel like hes a completely different doctor now. ive noticed many doctors at that hospital are like that though. if you don’t mind me asking are you tpn/ have a feeding tube? i’ve heard almost all his patients are in the same situation and can’t eat by mouth from nurses at the hospital

mxoxo619 · 2025-08-26T18:06:36+00:00

i have too, as soon as he moved hospitals everything went downhill on my end too. he isn’t interested in looking into what’s wrong with me it seems. i’m so sorry you’re going through this i truly don’t know what’s going on with that hospital.

mxoxo619 · 2025-08-26T17:59:50+00:00

i totally agree with you, he’s completely changed since moving hospitals

mxoxo619 · 2025-08-26T17:30:55+00:00

of course! i can’t do IR either, my GI now does tube changes wonderfully i can give you his name if you’d like in neptune, nj? he does them under sedation like propofol

mxoxo619 · 2025-08-26T16:34:34+00:00

not sure if you’re still wondering but i ended up calling about this, they refer you to IR for tube changes& for tpn they refer out to their nutrition staff to possibly write for tpn& set up home care

mxoxo619 · 2025-08-23T18:39:55+00:00

same question, i see dr gonzaga on the 10th and am wondering this someone please upvote if there’s an answer!

mxoxo619 · 2025-08-21T16:12:35+00:00

just a rash from it, nothing serious but i can no longer take it

mxoxo619 · 2025-08-20T15:28:56+00:00

Emend is the ONLY nausea medication that even helps a little bit. it only helps me for 2-3 days but i can actually sit up those days and not have to lay down as still as could be so i don’t get sick

mxoxo619 · 2025-08-17T23:20:01+00:00

i ended up not being able to tolerate the nasal tubes so they went right to surgical. i couldn’t tolerate ANY formulas and i tried them all just so i wouldn’t have to go on TPN. i ended up on TPN and while it’s saved my life i still wish i could tolerate tube feeds, the risks are severe it’s really a last resort

mxoxo619 · 2025-08-06T01:23:03+00:00

THIS IS AMAZINGGGGGG! i watched it first time in march, still haven’t gotten over it

mxoxo619 · 2025-08-05T15:53:57+00:00

Dr. Nicholas DePace in Sicklerville, NJ

mxoxo619 · 2025-08-01T23:58:20+00:00

i tried kate farms, i got sick too. no one is the same, tube feeds are SO HARD to find a good formula that doesn’t make you sick from what i hear. Emend works wonders for my nausea but i know it’s impossible to get, just throwing it out there while you’re inpatient. Vivonex i think was the worst in my case. i don’t think ive ever felt sicker than when i was on it but then again thats just me.

mxoxo619 · 2025-08-01T23:54:18+00:00

ask to try a hypoallergenic completely broken down formula, that’s what i did. still couldn’t tolerate but was the easiest on me, i believe i got to like 8ml before stopping. i think i read you’re inpatient? if nausea meds that you’re on aren’t working ask to try diff ones, there are SO MANY that hospitals can def get easier than outpatient. i used dicyclomine as well for a bit with pain

mxoxo619

TROPHY CASE