12 invaluable tips and tricks for NJ tubes (and plans for surgery!)

I am saying goodbye to my NJ in one week after over EIGHT months with NJs. I will be getting a GJ tube on the 21st. I think I am excited. I mean, the recovery is going to be no fun, but the overall benefit is pretty high! I am going to take a minute to write a little list of upsides:

  • Gastric decompression
  • More discreet; less stares
  • Less frequent replacements
  • Not in my nose
  • Not as easy to displace
  • No tape on my face
  • Once healed, it’s easier to swim with (tangled in goggles, swim cap, hair; much worry about it getting caught)
  • Not so bad with colds

Because I have had a very long run with NJs, I thought I’d write about some tips and tricks I have to make the ‘nose hose’ more comfortable!

  • When you are getting it placed, always soak your nose with saline spray first and ask them to use the lubricant on the whole tube instead of just the tip. This helps massively!
  • After a few weeks, my ear was getting floppy and sore from always holding a heavy tube up. Now I always wear cloth headbands to hold the tube up. Before you connect the tubing, put the headband on. The tube should go behind the headband and then when you connect the bag’s tubing the headband will hold it up instead of your ear.
  • Always keep everything in the backpack. It is just so much easier! I have command hooks hung up everywhere to put my backpack on, and of course I can hang it on the IV pole. I spent the first month or two hauling an IV pole around everywhere I went. It was grueling.
  • The infinity pump is one hundred thousand times nicer than the kangaroo pump. Specifically request it right away. It is practically silent and it is incredibly lightweight.
  • There is a type of tape called mepitac and it is super soft. I almost always put it under my tube and I fully believe that is why all of my face skin hasn’t just fallen off. I also put tegaderm on top, and it works really well, though it is really annoying to remove. I have done some IV3000 and it is fine, just not waterproof. I don’t recommend transpore, because it is really itchy.
  • Never put durapore on your face.
  • Your nose and throat will hurt and be congested and make colds twice as miserable. Put antibiotic cream (neosporin, mupirocin) in your nose to prevent infection. Use nasal saline spray to keep it moist. If you are able, drink warm drinks (even warm water). This helps because you have mucus going down your throat because of the cold. It likes to stick to the tube and harden onto it. The warm drink helps it soften and come off. Cold liquids, ice, and popsicles help with throat pain a lot too.
  • If you have POTS, put your salt down the tube. It makes it so easy!
  • Get a routine. I always mix up my tube food in the same way, or otherwise I mess up. I always flush it at certain times (like after brushing my teeth) or otherwise I forget. It helps to write these routines down.
  • When people stare at you, stare at them right back. Hard. They then realize how rude they were being, get uncomfortable, and look away. After that, sometimes they say something weird about it. It’s kinda funny. You have to make the staring somewhat funny, because otherwise it makes you SO uncomfortable to be out in public.
  • Appreciate all that the tube does for you and be at peace with it. The first 3-4 months I hated it with a PASSION. Hating it just makes it harder to deal with. After I hated it, I developed a love-hate relationship with it and that wasn’t much easier. Now I am at peace with it, and it is so much easier to cope with. With that said, I am very excited for it to be off my face!
  • If you run stuff at night, you want the tubing parallel to your body, not perpendicular. When I first got the tube, I put the IV pole right by my head. I would frequently wake up with tubing wound around my neck from tossing and turning. If you put it near the foot of the bed, it can’t get wrapped around you.
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#annoying, #calorie, #calories, #chronic, #chronic-illness, #enfit, #feeding-tube, #feedingtubeawareness, #gastroparesis, #mast-cells, #medical, #nj-tube, #pots, #rare-disease

How to add 500 calories to your day… easily!


pictured is vanilla chocolate

I call it my ‘oral supplement’. I have tons of different variations that I will post here today. My current favorite is PB chocolate. They are all vegan.

 

PB Chocolate:

1 carton: Kate Farms Core Essentials/Standard/Komplete Chocolate
4 ounces: Original Ripple Pea Protein milk
1 tablespoon: Unsweetened natural peanut butter

Place ingredients in small blender and blend well.
Recipe makes 460 ml.
Calories: 475

 

Double chocolate:

1 carton: Kate Farms Core Essentials/Standard/Komplete Chocolate
8 ounces: Chocolate Ripple Pea Protein milk
3 ounces: Water

Stir all ingredients together.
Recipe makes 655 ml
Calories: 475

 

Chocolate Vanilla:

1 carton: Kate Farms Core Essentials/Standard/Komplete Vanilla
8 ounces: Chocolate Ripple Pea Protein milk
3 ounces: Water

Stir all ingredients together.
Recipe makes 655 ml
Calories: 475

 

Chocolate:

1 carton: Kate Farms Core Essentials/Standard/Komplete Chocolate
8 ounces: Original Ripple Pea Protein milk
3 ounces: Water

Stir all ingredients together.
Recipe makes 655 ml
Calories: 425

 

Double Vanilla:

1 carton: Kate Farms Core Essentials/Standard/Komplete Vanilla
8 ounces: Vanilla Ripple Pea Protein milk
3 ounces: Water

Stir all ingredients together.
Recipe makes 655 ml
Calories: 455

 

What I do is take the number of mls and divide it by 10. Then I drink that many mls an hour from 9 AM to 6 PM. I drink them out of a 60 ml syringe because I find it easiest to do this way.Now, there is some slightly more exotic products here, so following is some more info:

Kate Farms is a vegan real foods nutrition shake. I put the vanilla one down my NJ tube. Their Standard/Core Essentials has all the necessary nutrition you need. The Komplete is like a protein shake. Standard/Core Essentials is available on their website as well as through home health. Komplete can be purchased on amazon as well as their website. Here are some links:

Kate Farms’ site:
https://www.katefarms.com/

Kate Farms Komplete on Amazon:
https://www.amazon.com/Vanilla-Replacement-Kate-Farms-Organic/dp/B06XNPQ83T/ref=sr_1_1_a_it?ie=UTF8&qid=1518468831&sr=8-1&keywords=kate%2Bfarms%2Bkomplete&th=1

Ripple is an awesome nondairy milk with tons of protein, calories, and calcium. It actually tastes like dairy milk! It can be purchased at Whole Foods, Target, and sometimes Fred Meyer. Here is their website:
https://www.ripplefoods.com/

#calorie, #calories, #chronic, #cooking, #dairy-free, #gastroparesis, #gluten-free, #recipe, #recipes, #shake, #vegan