Before I got sick I barely knew anything about feeding tubes and what I did know was from films, TV, magazine articles and pictures and I thought there was just one type of feeding tube (NG tube) but I was very wrong there are different types and so many reasons for needing one .
I have NG feeding tube (Naso-Gastric tube) or my name for them is nose noodle . I have had an NG tubes in for 3 years and never been more than 4/5 hours without one .
I need my tube due to not being able to swallow properly and digestive issues. It’s my life line and is my only source for nutrition, hydration and medication and I wouldn’t be here without it .
My first NG tube
And I’m not going to lie it was extremely uncomfortable and it was quite painful. I was crying and retching and having a panic attack and it felt like it was taking forever when it only took about 5 minutes. Prior to being admitted I had watched lots of YouTube videos on NG tubes and thought I was ready but it is different watching then having it done. In my experience they do get a little easier each time and now I don’t get upset or panicky and I don’t retch anymore.
Getting used to feeding tubes
I thought it would be easy tube in pump on feeds go but it isn’t .
You have to start slow and work your way up. My first feed was 50 mls a hour over 20 hours and slowly we increased the rate. That first admission was 36 days to get my weight and levels up to a safe range.
I got “training" from a nurse from Nutricia to learn how to use the pump, set up the feed, put water and medication down so I could go home with it.
The plan was to get a PEG feeding tube (surgically placed tube in stomach) but for various reasons it keeps getting cancelled.
In 2017 while in hospital after another PEG tube cancellation they finally decided to teach me how to put my NG tubes in myself which is a lot better then having to go and get it changed*; now I change mine every 6-8 weeks or when it needs replacing and have 1 prescribed every other month with my tube feeding supplies.
Things dont always go right
- I spent a lot of time at A&E because I wasn’t trained or allowed to insert my own tube at that point, so everytime it blocked, accidently pulled out or if I threw it up I had to go to A&E to get a new one.
- Wanting to throw the pump out the window for alarming for no real reason (normally in the middle of the night when you’ve just got to sleep)
- Leaks happen, loose connectors, not putting the syringe in right. You do get wet and sometimes the feeds or Meds does not wash out.
- Sometimes you just can’t reach your feed target and shouldn’t be afraid to talk things over with the dietician.
The online tubie community is lovely and supportive and friendly whether your a newbie tubie or not and have tips and tricks that even the nurses don’t know.
If your wondering about my bear Jinx I got it from my brother when I first got my nose noodle from the lovely people at www.tubiefriends.com
A real good awareness website is www.feedingtubeawareness.org/
*It can be dangerous to insert a NG tube without being shown how to by a healthcare professional.