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

I’m nervvvous…

  • I’m going to a different hospital three hours away.
  • It’s going to be a new doctor.
  • I’m going to be admitted.
  • There is anesthesia.
  • There is a new tube placement.
  • There is a manometer placement.
  • I will not be allowed to move for 24 hours.
  • I have to consume 400+ calories in less than 30 mins.
  • I am going to be given medicine that I showed an allergy to.
  • If it’s normal than they probably won’t have much to help me.
  • If it’s abnormal, they don’t have great solutions either.
  • All of this in less than 48 hours…

I am going to be getting antroduodenal manometry on Wednesday. I will try to remember to take some pictures of the whole thing and write a post afterwards. Here’s the schedule:

Monday: Clears all day and drive to a hotel near the hospital for the night.
Tuesday: Get endoscopic placement of the manometry tube. Spend the day waking up. Be admitted. Try to sleep that night.
Wednesday: Bright and early they start recording. At 10 am I have to eat the 400 cals. At noon they give me a motility stimulant. At two they give me a different one. The test is over at four. The doc should tell us the results. Then they attempt to put my NJ back in. Then I get discharged. Go to the hotel and sleep overnight.
Thursday: Drive home. Be done.

Random thoughts:

A friend gave me a reusable tourniquet for starting the IV. It is pretty cool! I think these are similar: https://www.amazon.com/Hooshion%C2%AE-Emergency-Tourniquet-Activities-Multi-color/dp/B016B5QN0I/ref=sr_1_2_a_it?ie=UTF8&qid=1526170835&sr=8-2&keywords=reusable%2Btourniquet&th=1

I plan to run an odd mixture of bone broth, collagen, coconut water, and saline through my tube on Monday for some protein and to keep my sodium and fluids up. Here’s my recipe:

3 C bone broth
4 T collagen powder
1 C coconut water
1.5 C water
1 t Himalayan pink salt

That will provide me with:

300 calories
51  grams of protein
2.5 gr sodium
44 ounces of water

…which is pretty good considering the fact that they are clears! (You can tell I spent a lot of time coming up with that recipe.)

 

 

 

I have a really awesome suitcase that I am using to hold my stuff: https://www.amazon.com/dp/B016IO9O9O/ref=twister_B0779B999Z?_encoding=UTF8&psc=1

 

 

 

Of course I will use another one of my awesome enfit tubes! https://www.vitalitymedical.com/corflo-ultra-lite-ng-with-enfit.html It’s the 8 FR. 43 Inch Length 3G wt w/ Stylet.

 

 

 

The long and short of it is that I am just incredibly nervous. I have anestesthia, radiology, new doctor, and admittance, all mixed in to just two days. The good news is, this test could bring me some answers I really need, and help find some treatment to have me feel better! (And then my nervous brain says ‘What if I get a false negative?!?’)

 

 

(That post had no spine and probably didn’t make incredibly much sense, but it was helpful to write down what I am nervous about)

#chronic, #chronic-illness, #cooking, #dairy-free, #enfit, #feeding-tube, #gastroparesis, #gluten-free, #manometry, #medical, #medical-testing, #nj-tube, #orthostatic-hypotension, #pots, #rare-disease

DO NOT call it ‘formula’ and my other tubie pet peeves

I have no idea why, but I hate it when people call my tube food formula. I guess it’s probably because it sounds like it’s for babies. I know the word formula simply means a formulation of food, but it still really upsets me! Also, I don’t like when people say you are ‘feeding’, because it sounds very animalistic. What do dislike people saying about your tube?

Current running list  of what the tube itself has been called:

Line
Hose
Stick
Strap
Thingy
Yellow strip
Weird thing in your nose
String
Flotation device (no joke – I was in the pool and this older woman comes up to me and asks how it helps me float. I absolutely COULD NOT figure out what she was talking about until she finally said ‘the yellow cord on your face’. I explained to her that it doesn’t help me float, it’s not for swimming at all. She acted like she didn’t believe me.)

And my favorite:
Why do you have a pencil in your nose?

And some sweet little kid even told me:
That looks owy. 🙂

And then of course there is the stares…

#annoying, #chronic, #chronic-illness, #cool, #dairy-free, #enfit, #feeding-tube, #feedingtubeawareness, #gastroparesis, #gluten, #gluten-free, #mast-cells, #mcad, #mcas, #medical, #nj-tube, #orthostatic-hypotension, #pots, #rare-disease, #wheat

My crazy NJ month

So, about a month and a half ago, I passed out, and my NJ tube got caught on something and was pulled out of my intestine. We spent five days trying to push it back in, and it just Would. Not. Descend.

So I had to go to radiology to get it ‘fixed’. They couldn’t fit the wire in because it was too old of a tube, so they had to guide it without a wire. That didn’t work, of course, we had been doing that for five days! So I had to pull the tube all the way out, and they had me choose a new one. There was what I already had, and one other that didn’t have a medicine port (one of the banes of my existence), and it was ten cm. longer. So I chose that one. And let me mention that I was coming down with the flu that day, and I had a low grade fever, so my decision making might not have been the best. But anyway, this tube was PVC and super stiff. They guided it right into my intestine, which has never happened before!

The new tube worked great. (except for the fact that it was very uncomfortable)  But nine days after placement, the connector at the end popped off. We spent multiple days trying to find a replacement part to no avail. They literally do not fix nasal tubes.  So I pulled it out.

Before replacing it, we decided to research and find the best tube possible. We did. It is absolutely awesome. I have the CORFLO ULTRA Lite NG with ENFit 8 FR. 43 Inch Length 3G wt w/ Stylet. The part number is 40-7438. Getting ahold of this tube was a time consuming pain. First we asked my home health company to supply it. They said I needed a prescription so we wrote a prescription and got my doctor to sign it. They sent it to my home health company. My home health company had to order it. And… of course they sent the wrong tube. They sent the non enfit tube. I really didn’t like it. Home health informed us they can not get ahold of the tube requested. So my dad ordered it from vitality medical. They only sell TEN packs, so he ordered a ten pack. Unfortunately, we needed a prescription to buy it online as well. The prescription had to be changed, though, because we were ordering ten tubes. So the prescription had to be signed again. Then we waited for the tubes to come.

The day after they came, we went to radiology to get it put in under fluoroscopy. They absolutely could not get it into my intestine (because of my gastroparesis, nothing passes through my stomach without a fight), so they gave it some slack and asked me to come back the next day. The next day, it was still in my stomach (of course). They reinserted the wire and pushed it around a bunch. It finally went in, which was an unexpected surprise!

Later that SAME DAY, I went swimming. I dove into the pool (which I do all the time), and my goggles broke. They caught my tube and it got pulled about 5-8 cm. I didn’t get too worried, I thought it would definitely still be post pyloric, even if it wasn’t as far down. I pushed it back in and crossed my fingers.

When I got home and started using it, I started to get really full and nauseous, so I checked the placement by pulling some of the contents out of the tube and seeing what they were. I also did a whoosh test and a few very large water flushes. I concluded that it wasn’t fully where it needed to be, but that it was still post pyloric, just back flowing into my stomach a bit. I pushed it in another ten cm to help it get back down to my jejunum.

Now, after some research, I don’t think that was the best choice. If you have a tube in your duodenum, and you push on it, it hits a tight bend in the intestine. If you push it into this bend, the tube loops back around and goes into your stomach. I think this is what happened, but I can’t be sure. I now think the tube is fully in my stomach. So I am currently running tube feeds incredibly slowly into my it.

In normal circumstances, we would now go get it replaced AGAIN. But I am going to get antroduodenal manometry in less than a month, which entails pulling the tube out. It simply isn’t seeming worth the radiation/ anesthesia to have it only be used for 2-3 weeks.

And that brings you to where I am now. Crossing my fingers that it will descend into my intestine on its own (which it probably won’t, because it has never done that in the past.) Ug, it’s been a frustrating month!

#annoying, #chaotic, #chronic, #chronic-illness, #dairy-free, #enfit, #feeding-tube, #feedingtubeawareness, #gastroparesis, #gluten, #gluten-free, #mast-cells, #mcad, #mcas, #medical, #nj-tube, #rare-disease, #ug, #wheat