Feeding Tube Awareness Week Feature-Liz+Lauren+Cat

Welcome to Feeding Tube Awareness Week-Pretty Couch Potato Style! Over the course of this week, I’ll be sharing fifteen of my tubie friends’ stories.

The range stories are all very different from each person. Some have been on tube feeds for nearly their entire lives, some just started on tube feeds, and some don’t even use their feeding tubes for feeding (HAYYYY, das me!)

Let’s start here with my friend Liz! You can find her on Instagram @liz_81712!1

Q: What diagnosis led to you needing a feeding tube?

A: The underlying diagnosis that caused me to require tube feeding is mitochondrial disease.

Q: How many years have you had a tube or been on tube feeds?

A: I have relied on tube feeds as 100% of my nutrition for 19 years now, since I was 18 months old. Anything I’ve been able to have orally has merely been for pleasure.

Q: What type of tube do you have?

A: I started off with a G-tube for malabsorption, and had that until we ran into some disease progression. My gut shut down, and I wassn’t able to tolerate G-tube feeds any longer, so we switched to an ND (naso-duodenal) tube for a week until we could switch out my G-tube button for a GJ-tube button.

Q: What would you love to share with someone new to tube feeding?

A: I would love to share that you are not less because of your feeding tube. You can and will still do amazing things. A feeding tube is a valuable tool to help you do that, not something that takes away from that. Fed is best, no matter what it may look like.

Q: Do you have a tube that you use for something other than feeds? (Venting, meds, etc.)

A: I use the G portion of my GJ-tube to vent at night and drain when needed. I also have a cecostomy tube which is a G-tube button that was surgically placed in my cecum so that I can administer large amounts of meds that help my intestines work since they shut down as well.

Q: How has your feeding tube helped to improve your life?

A: My feeding tube has not only allowed me to live, but to thrive and do the things I love. Everything I do is because of my feeding tube, not in spite of it.

Q: What is a complication you’ve had that you never expected to happen with your tube?

A: Well, the other day I woke up with my headphones entangled in my tube. Or the excess tubing has gotten shut in a car door before!

Q: What is something about having a tube that you find most frustrating to deal with?

A: One of the most frustrating things about living with a feeding tube, especially on continuous feeds, is that going anywhere requires lots of prep and planning. I always have to be conscious of how much formula I have left, and when it’ going to run out. Also, if I forget something or run out of formula, it is not like I can just go pick up some from the store.

Q: What question do you hate answering about your tube? How could someone ask it in a kinder way?

A: I am very open to answering questions- I understand people do not see this stuff every day. I would much rather answer questions than be stared at or someone making their own assumptions. However, the question I hate is, “What’s wrong with you?” or “What happened?” These questions always take me off guard- nothing “happened” to me, I was born! And there is nothing wrong with me! I am perfect the way I am. My feeding tube is just as much a part of me as your arm or leg is to you. A kinder way to get to know someone would be to simply say, “Hi” and introduce yourself. Then you could say, “Why do you have to carry a backpack?” Do not feel entitled to this information either, It is everyone’s choice whether they share their story with you or not.

Q: What is your favorite tubie product?

A: My favorite tubie products are tubie pads!!

Q: What’s your top tubie trick you’d like to share?

A: I love to draw with sharpies on my feeding bag, it gives me something to look forward to each night and it makes it more fun! I also tape a feed bag cap to my IV pole in case I need to unhook for a minute but want to keep the end clean. If you need a make-shift clamp for an extension, nasal tube, or long tube I have cut the Christmas tree end of off a feeding bag and threaded on a clamp I cut ff of an extension and voila!

Q: What does your feeding tube mean to you?

A: My feeding tube means life. I can honestly say I would not be here without it. It is my lifeline. My feeding tube means getting to watch my nieces grow. My feeding tube means being able to go to college and hang out with friends. My feeding tube is what allows me to thrive despite what the rest of my body goes through.

Thank you a million zillion times, Liz! I absolutely loved hearing from you on this!

Now the awkward moment where I share my answers to my own questions 🙂 If you’re new here, you can always find me on Instagram @prettycouchpotato!2

Q: What diagnosis led to you needing a tube?

A: Chronic Intestinal Pseudo-Obstruction. How rude.

Q: How many years have you had your tube or been on tube feeds?

A: I’ve had my J-tube since December of 2014 and my G-tube since September of 2014.

Q: What type of tube do you have?

A: I have 2 dangler (long) tubes, one G and one J.

Q: Do you have a tube you use for something other than feeds?

A: Sure do! Both of them actually, I don’t tolerate tube feeds, as I’m exclusively TPN (IV nutrition) dependent. I use my G tube exclusively for venting and draining. And my J-tube is also used for occasional venting, as well as medications. (I know it is not typical for a J-tube to be used for venting, but that is what it was placed for.)

Q: What would you love to share with someone getting a new tube?

A: I would love to share that it eventually becomes a part of your daily routine. It will begin to feel like a new normal. They might hurt, but be sure to speak up and figure out a plan with your doctor or a wound care nurse. A wound care nurse changed my life with my new tube pain!

Q: How has your tube helped to improve your life?

A: While I cannot speak to the life-saving qualities of tube feeding that many are able to, I am able to speak to the life-changing qualities of my tubes that allow me to get things out of my digestive tract that would otherwise make me feel miserable day in and day out. For many years of my life, I dealt with uncontrollable pain, discomfort, and lots of vomiting due to even the natural occurring digestive juices that accumulated in my stomach and intestines. Eliminating those parts of my day to day have been absolutely life changing. Since I got my G-tube, my frequency in hospital stays has decreased by a zillion percent (okay maybe that’s a little extra, but you know what I mean!)

Q: What is a complication you’ve had that you never expected to happen with your tube?

A: I’ve had one pulled out on accident. I’ve had one make its way into my skin tissue before (holy heck that was painful.) I’ve had many issues with hypo-granulation tissue. All are complications many tubies experience, so I wouldn’t say I never expected them to happen. But they are all very unpleasant and I would prefer to avoid them all in the future!

Q: What is something about having a tube that you find most frustrating to deal with?

A: Honestly, the limitations in clothing. Not because I don’t want my tubes to show, but more as a pain issue. Bras hurt my G-tube, and pants hurt my J-tube just because of where they’re placed. I just generally am frustrated by the pain and discomfort they cause.

Q: What is your favorite tubie product?

A: I just recently fell in love with tubie pads! They make me feel so much happier than plain ol’ gauze!

Q: What’s your top tubie trick you’d like to share? 

A: The way I’ve learned to tape my tube to my belly to anchor it down when I need to! I would love to share my method via video if you’d like to see it, just let me know!

Q: What does your tube mean to you?

A: My feeding tube means having two fairly uncomfortable tubes coming out of my belly that require quite a bit of responsibility and time.. But the benefits absolutely outweigh those things. Far less hospital stays, being able to eat snacks for pleasure that I was never able to eat before, being able to wear clothes I love and not feel uncontrollably uncomfortable for the most part.

Next up, meet the amazing Cat! You can find her on Instagram @imaginationbycat!

13

Q: What diagnosis led to you needing a feeding tube?

A: Crohn’s Disease, Malabsorption, Amplified Muscoskeletal Pain Syndrome, and Gastroparesis

Q: How long have you been on tube feeds?

A: 2 years

Q: What type of tube do you have?

A: A G-tube

Q: What would you love to share with someone new to tube feeding?

A: Having a feeding tube isn’t the end of the world, it’s the beginning of a beautiful new life!

Q: How has your feeding tube helped to improve your life?

A: Before my tube, I had zero energy. I was withering away, in pain all the time and unable to eat. My feeding tube has given me the energy to do what I love: travel. Since getting my feeding tube, I’ve already gone to five countries and modeled for several brands!

Q: What is a complication you’ve had that you never expected to happen with your tube?

A: Body dysmorphia. My confidence was shot when I first got my tube, but after a while, I realized that this is just another tool to live.

 Q: What is something about having a tube that you find most frustrating to deal with?

 A: The balloon pops every so often! It comes out of the blue and my insurance doesn’t provide a spare, so I have to go to the ER to get it fixed.

Q: What question do you hate answering about your tube?

A: The question I hate the most is, “What is that thing?” There are definitely nicer ways to phrase it.

 Q: What is your favorite tubie product? 

A: I love tubie pads! And Calmoseptine, which has been a life saver for granulated tissue. 

Q: What’s your top tubie trick you’d like to share? 

A: I was having a lot if issues with granulation tissue, so I taped it upwards and ran the line through my shirt. Combined with the calmoseptine, I haven’t had any problems since!

 Q: What does your feeding tube mean to you? 

A: To me, my feeding tube means freedom. It means getting who I want to be without sacrificing my health.

Such awesome answers, Cat!

That’s a wrap for today! Come back tomorrow for several more features!

 

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