Feeding Tube Awareness Week Feature-Ally+Breanne+Mandi

Day three of spreading some Feeding Tube Awareness up in here! Let’s jump to it, as we have three precious humans to hear from today! First up, Ally! You can find her on Instagram @myhealthquirks!5

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

A: Gastroparesis due to Elher’s Danlos Syndrome

Q: How long have you had your tube/been tube fed?

A: 3 months

Q: What type of tube do you have?

A: A J-tube, I just switched from a dangler to an AMT mini one button!

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

A: First of all, your life is about to get so much better. Whether you realize it or not, you’ve been spending every ounce of energy you had on surviving, and now you’re about to have the chance to truly live again. You will have the huge burden of keeping yourself alive taken off of your chest, and you’ll have the energy to focus on things you love again. Second, I know it feels like you’ll never get used to carrying around a backpack all the time or being attached to something 24/7, but I promise it’ll be second nature before you know it.

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

A: My tube has given me my life back. I went from force feeding myself protein shakes and soup just to stay alive while being bedridden, to being able to go the places I want to go and spend cherished time with family and friends without having to worry about keeping my body nourished. I no longer spend hours of the day vomiting, I no longer have to watch myself decay, I no longer am riddled with anxiety about my rapidly declining health, I no longer cry when I see myself in the mirror. This tube has given me more freedom than I ever imagined.

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

A: “How long do you have to have that thing?” This is my absolute #1 pet peeve and my least favorite question for two reasons. One; I have a genetic disease that causes my stomach to be partially paralyzed. I have no idea what the future will hold, but it is possible that I will never be able to nourish myself orally again. So basically, my answer to this is usually “about as long as I intend to stay alive.” Another thing I want to address regarding this question is that this tube is the best thing that could have happened to me, it is not a burden. There is a lot of implicit ableism in the idea that those of us with feeding tubes are somehow inhibited by having this medical device, or that our quality of life is in any way decreased because of it.

Q: What is your favorite tubie product?

A: GRIP-LOCS! These are incredibly useful for taping down my tubing so it doesn’t tug at my stoma if I get it caught.

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

A: Any backpack can be used to carry feeds! Just use a tubie clip to attach the feed bag to the seam of the backpack and you can convert anything!

Q: What does your feeding tube mean to you?

A: In a word; freedom. It gives me a second chance at life, every day. Today, I got to go hang out on the roof of a building and listen to my favorite country music as I watched the sun set. This tube gave me that, and it means everything.

I was so excited to hear these beautiful answers! It makes my heart sing to hear that Ally’s life is so much more full with her feeding tube along for the ride!

Next up, Breanne! You can find her on Instagram @breanne_dalton!6

Intro: The diagnosis that led me to a feeding tube was the diagnosis of gastroparesis as well as intestinal dysmotility. When my journey began, we tried everything to keep me at a stable weight and reduce my refractory nausea and vomiting and failed miserably. I had no energy to do any of the basic, life sustaining functions, which left me virtually bed bound for a year as my body waged a war against itself, and I lost almost half of my body weight. My labs kept returning with results that were continually worsening, and I was getting increasingly frustrated and upset by my worsening state of health. My gastroenterologist and I set a specific weight that if I dropped below, I would need a feeding tube. Since my vomiting was so severe, a nasojejunal tube was not a viable option by my gastroenterologist, and because of that, a surgical J tube would be needed. I have a j tube that was placed first initially in May of 2018; the tube I had to begin was a red catheter stitched to hold the tube in place. Since my body hated the stitches, we switched the tube to one that uses a balloon to hold it in place, which is much more comfortable! In November of 2018, I had my G tube placed, and it was an incredibly easy surgery with me going home the same day. I use my J tube for both my feeds and my medications while I use my G tube to vent and drain; both tubes have improved my quality of life tremendously!

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

A: For someone new to tube feeding, I would love to share that it gets easier; tube feeding and caring for your tube becomes a part of routine as you adjust to the new medical device. Do not be discouraged if you have difficulties at the beginning – I can’t tell you how many times my feeds leaked on my bed, on my clothes, on the floor as I figured out how to navigate this new world! Also, surround yourself with positive people that will look past your tube and see you as the person you are, for you are much more than just a person with a feeding tube!

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

A: I had my G tube placed to vent and drain the stomach contents/bile accumulation that was making me vomit excessively every day. With this new tube, I went from vomiting upwards of 20-30 times a day to having some days with no vomiting or very little vomiting! As we work to figure out my situation with nausea/vomiting, my G tube is almost constantly venting/draining, and while having a drainage bag for bile can be a bit cumbersome, it has given me my quality of life back! I can finally sit through an entire one of my classes in college without having to leave in the middle due to my nausea – it’s honestly amazing!

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

A: Before I had my feeding tube, I was just existing in life, unable to get out of bed and being robbed of the ability to live a life of any kind. I had to take a year off from my studies at college, where I was on a full academic scholarship, and move back home to be cared for by my mom. Since getting the feeding tube, I have gotten so much of my freedom and ability to live back. I have been able to return to college full time, where this first semester back I made a 4.0, and I have been able to volunteer at the early intervention speech therapy clinic, working with children with feeding tubes in feeding therapy, where I one day aspire to work. By giving me the ability to live, my feeding tube has allowed me to return to doing many things a healthy 22 year old can do and to give me a bright future.

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

A: A complication I never expected to happen with my tube is the fact that they cause massive skin irritation around the stoma from a leakage of bodily fluids around my J tube. My skin is consistently raw, and I deal with painful granulation tissue and subcutaneous infections as well. Keeping my stoma and the surrounding skin healthy is a difficult task, and I am still trying to find which products work best to help keep my tube site healthy and functional.

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

A: The most frustrating thing for me to deal with when having a tube is being constantly tethered to my feeding tube pump which, in turn, has my lines getting caught on many different objects. I get caught on everything from doorknobs to drawer handles to even the pews in church! It’s frustrating in the sense that every time I get caught on something, the pull on my stoma is painful. Otherwise, it can be hilarious – imagine, seeing someone walking and getting caught on a doorknob and being jerked back comically; in essence, that’s life with a tube for a clumsy person!

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

A: The question I hate the most is “How could you just go from a normal person to needing a feeding tube? You don’t even look sick; you look so good now that you’ve lost weight!” This question bothers me since it doesn’t look at the medical journey one has to take from the image of “normalcy” to needing a life saving medical device, and it looks at being skinny as being positive, not as a sign of needing medical help. To ask the question in a nicer way, someone could ask about me about my medical journey and how that journey led me to need that tube, and they could take the time to understand that not all weightloss is good in a situation when one cannot control their circumstances or their body fighting back against them.

Q: What is your favorite tubie product?

A: My favorite tubie products are tubie pads, specifically tubie pads from Turkey Tot Customs and the barrier cream calmoseptine. The tubie pads are the softest I have found so far, and they are incredibly gentle on my sensitive skin. I appreciate the fact that these tubie pads have a ribbon at the snaps which makes them easier to un-snap when changing the pads. They have been amazing in helping my skin heal and return to a state where it’s no longer raw!

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

A: My top tubie trick is to use tegaderm to secure the tube to the skin so it doesn’t pull on the stoma and keep it safe – I leave some slack in the tube when I tape it so if the tube gets tugged on, which mine always does since I am incredibly clumsy, the stoma is not injured or hurt in any way! Keeping the tube stable and secure with the tape and a tubie pad helps keep granulation tissue to a minimal level, and if granulation tissue does occur, a mix of calmoseptine and the spice alum can help decrease it without cauterizing it with silver nitrate!

Q: What does your feeding tube mean to you?

A: My feeding tube means a second chance at life for me – going from being bedridden to returning to school has been made possible due to this life-saving device. My tube has given the ability to have some peace of mind in the face of an unrelenting, chronic condition by giving me the life-sustaining nutrition I went without for so long. It has given me the ability to enjoy once again the small moments with my family and the strength to push through the difficult times. I never thought that I would be so grateful for a silicone tube that is placed in my intestines, but yet, everyday I wake up and am thankful for the advancements in medical science that created this technology and saved my life!

Thank you so much for sharing these amazing answers, Breanne! I’m so glad your tube has given you your life back!

And for the grand finale on this Wednesday, here’s Mandi! You can find her on Instagram @a_salzman!7

Q: What diagnosis led to you needing feeding tube?

A: Mast Cell Activation Syndrome

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

A: Almost 2 years (May of 2019 will be 2 years.)

Q: What type of tube do you have?

A: I first got an NG tube and had it for 3 months, I then had surgery to place a PEG tube, this was then replaced with a G-tube button after 4 months.

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

A: You can still do all the things you loved to do before you got a tube, having a feeding tube doesn’t hinder you from activities, in fact it may help you to do more things!

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

A: I use my tube for medications in liquid form to help with absorption.

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

A: My feeding tube has improved my life drastically, it gave me the ability to finish high school, and is now keeping me stable enough to go to college. Having a stable source of nutrition also makes it so I can do the things I enjoy such as going on trips with my family.

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

A: The random pain that doesn’t seem to have a reason as to why it’s happening.

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

A: The constant drainage and granulation tissue that never seems to stay away.

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

A: When people ask, “Well why can’t you just drink the formula?” The way this is worded makes it sound accusatory even if its not meant to be. Instead of asking the question in that way, someone could ask, “What makes it so you can’t drink the formula?” That way it sounds more like you are taking an interest in the subject and not just asking accusatory questions.

Q:  What is your favorite tubie product? 

A: Little Len Creations tubie pads are my favorite!

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

A: Using Velcro strips made for managing cords to wind up the extra tubing so its not so long and doesn’t get caught as easily!

A huge thank you to each one of you ladies! I so appreciate your willingness to share!

Tune back in tomorrow to hear from some more fabulous tubies!

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