Join the Conversation on
29 people
0 stories
4 posts
  • Explore Our Newsletters
  • What's New in

    Can you ask for a feeding tube? #Gastroparesis #FeedingTube #njtube

    After six months of stomach pains, nausea and throwing up, I’m honestly done with it. I still eat, but it’s getting harder and harder and I don’t know if I can do this on my own for much longer. I’m not yet diagnosed with gastroparesis, but in a month I will finally get tested and I hope to have answers.
    Due to a lot of allergies I have always lacked nutrients, but doctors didn’t want to give me more.

    My question: Is it odd to ask for a feeding tube and do you need to be underweighted? (I know they can be really painful and I don’t want it but I feel like it’s my only choice right now).
    And can you get one without being in hospital?


    NJ Tube Fears

    Hey guys :)

    I have moderate-to-severe intestinal dysmotility, and mild Gastroparesis. After months of weight loss and pain and discomfort, my team has decided the time has come for a feeding tube to be placed. I'll also be starting a motility med, but that may make my heart condition (Long QT Syndrome) worse so I'll be in the CICU for a bit as well while we watch that. I'm also apparently an "ideal candidate" for refeeding syndrome, so watching that as well. The idea is that the med combined with pre-digested food will be something my body can handle, and that I'll get off the tube within a few months and go back to my liquid diet sans feeding tube.

    Frankly, I'm scared. Terrified. I've never had a feeding tube before, never had a central line or anything like that, and I have no idea what to expect. I know it'll suck during placement and the first few days, but according to the internet the discomfort will pass relatively quickly. I'm much more concerned with the public's perceptions. As a 15-year-old ambulatory wheelchair user, I'm used to stares, but I know they'll only get worse when I have a tube clearly pasted on my face. I'm also worried about feeding in public, flushing, delivering meds, everything that's going to be a new part of my life. I have an invisible illness, and I'd like it to remain that way. This changes that drastically.

    I'm at the point that I need to be admitted now. However, my hospital is currently overrun and having a Flu outbreak, so I got deferred for a few days. I go in on December 30th for placement. It's better than Christmas inpatient anyways.

    I guess I'm posting here in the hopes that someone else will get it. I'm scared, and I don't know what to expect. If anyone has any tips/advice they'd be much appreciated.

    #EhlersDanlosSyndrome  #PosturalOrthostaticTachycardiaSyndrome  #dysmotility  #ChronicIllness  #ChronicIllnessEDS  #Fear  #njtube   #tubie   #InvisibleDisability   #InvisibleIllness   #LongQTsyndrome

    See full photo

    Any tube feed people out there? #TubeFeeding

    I'm currently sporting the NJtube and am awaiting surgery to have a peg and a pej placed as separate tubes and am wondering who is out there with either of these or both or the combined peg-j. My mental health is suffering significantly as I smile for my daughter and carry on just trying to make it through as my current tube is a dud and I'm not receiving any nutrition. Life is so up and down for all chronically ill so sending spoons and love to yall.
    #Tubies #Tubiestrong #TubeFeed #njtube #PegTubes #pej #Depression #MentalHealth #ChronicIllness #fighting


    Is this normal?

    I have a Nj tube, and I keep tasting my formula in the back of my mouth. Is this a thing I should be considered about?
    #Gastroparesis #FeedingTube   #njtube   #FeedingTubes   #Tubies   #nasojejunal