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

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

Some really good motivational quotes :)

I really like these quotes. They are especially relevant to illness, but they can relate to anyone.

 

I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.

Whether you think you can or you think you can’t, you’re right.

The best revenge is massive success.

People often say that motivation doesn’t last. Well, neither does bathing.  That’s why we recommend it daily.

Never let the things you cannot do prevent you from doing the things you can

You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down.  The choice does not belong to fate, it belongs to you.

You are strong when you know your weaknesses. You are beautiful when you appreciate your flaws. You are wise when you learn from your mistakes.

Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.

We are stronger in the places we have been broken.

The reason why people give up so fast is because they tend to look at how far they still have to go, instead of how far they have gotten.

If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.

When you have exhausted all possibilities, remember this: you haven’t.

Maybe life isn’t about avoiding the bruises. Maybe it’s about collecting the scars to prove that we showed up for it.

Normality is a paved road. It’s comfortable to walk, but no flowers grow on it.

I can’t tell you when, but I can promise you it will get better, it will get easier, and it will all be worthwhile. Just promise me you won’t ever give up.

Live to inspire, and one day people will say, because of you, I didn’t give up.

Be soft. Do not let the world make you hard. Do not let pain make you hate. Do not let the bitterness steal sweetness. Take pride that even though the rest of the world may disagree, you still believe it to be a beautiful place.

She made broken look beautiful and strong look invincible. She walked with the universe on her shoulders and made it look like a pair of wings.

Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’

Regret for the things we have done will be tempered by time. It is regret for the things we did not do that is inconsolable.

Our greatest weakness lies in giving up. The most certain way to succeed is always to just try one more time.

It’s about the journey.

If you’re going through hell, keep going.

What doesn’t kill you makes you stronger.

You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.

The truth is we’re all a little bit broken. We must learn to love the broken pieces of ourselves – be gentle and empathetic with ourselves, and others.

Hope doesn’t require a massive chain where heavy links of logic hold it together. A thin wire will do…just strong enough to get us through the night until the winds die down.

Nothing is more beautiful than a real smile that has struggled through tears.

Don’t forget you’re human. It’s okay to have a meltdown, just don’t unpack and live there. Cry it out and then refocus on where you are headed.

Some days are better, some days are worse. Look for the blessing instead of the curse. Be positive, stay strong, and get enough rest. You can’t do it all, but you can do your best.

The strongest people I’ve met have not been given an easier life. They’ve learned to create strength and happiness from dark places.

We are stronger in the places we have been broken.

I don’t want my pain and struggle to make me a victim. I want my battle to make me someone else’s hero.

Maybe it’s not always about trying to fix something that is broken. Maybe it’s about starting over and creating something better.

Do not believe the things you tell yourself when you’re sad and alone.

If you stumble, make it part of the dance.

Never let the things you cannot do prevent you from doing the things you can.

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.

A woman is like a tea bag: You never know how strong it is until it’s in hot water.”

She believed she could so she did.

The secret of life, though, is to fall seven times and to get up eight times.

Time is priceless, but it’s free. You can’t own it, you can use it. You can spend it. But you can’t keep it. Once you’ve lost it you can never get it back.

Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.

Look at a stone cutter hammering away at his rock, perhaps a hundred times without as much as a crack showing in it. Yet at the hundred-and-first blow it will split in two, and I know it was not the last blow that did it, but all that had gone before.

Nothing is more destined to create deep-seated anxieties in people than the false assumption that life should be free of anxieties.

The truth that many people never understand is that the more you try to avoid suffering, the more you suffer, because smaller and more insignificant things begin to torture you, in proportion to your fear of being hurt.

The world is more magical, less predictable, more autonomous, less controllable, more varied, less simple, more infinite, less knowable, more wonderfully troubling than we can ever imagine.

Many of life’s failures are people who did not realize how close they were to success when they gave up.

Courage is not having the strength to go on; it is going on when you don’t have the strength.

Something will grow from all you are going through and it will be you.

Success is not final, failure is not fatal: It is the courage to continue that counts.

You may be the only person left who believes in you, but it’s enough. It takes just one star to pierce a universe of darkness. Never give up.

Health is like a crown the healthy wear, but only the sick can see it.

It’s like swimming upstream every moment you are awake.

She was always fighting a battle but her smile would never tell you so.

And here you are, living despite it all.

#allergy, #awesome, #chronic, #chronic-illness, #cool, #feedingtubeawareness, #gastroparesis, #gluten-free, #inspiration, #mast-cells, #mcad, #mcas, #medical, #motivation, #quote, #rare-disease, #wheat