Feeding Tube Awareness Week Feature-Rose+Sam+Ansley

Welcome back! Let’s dive right back in with day two of Feeding Tube Awareness week with my friend Rose! You can find her on Instagram @my.eds!14

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

A: Gastoparesis, ntestinal dysmotility, MALS

Q: How long have you had your tubes?

A: Six months.

Q: What type of tube do you have?

A: An NJ tube and an NG tube.

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

A: If tube feeds work for you it can be a complete life changer! It seems scary but if it can drastically improve your life try to be open to it.

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

A: I use my NG for venting and my NJ for meds! I cannot use my tubes for the traditional nutrition route due to my worsening motility. However, they are just as essential to my care as someone who used them for feeds!

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

A: My tubes have brought me symptom control. I cannot do feeds right now (I am dependent on TPN) but they have helped keep my vomiting and GI symptoms at bay. It changed my life! I was throwing up one or two tubes a week. Since getting my NG to drain, i haven’t thrown up a tube in three months!

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

A: Throwing up tubes. My vomiting was so severe but I assumed the tubes would stay in. I started throwing up tubes the night I got an NJ. This is not the case for everyone!

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

A: The tape on my face. It is so easy to pull on your tube and rip the tape off. Since my skin is so sensitive it often takes a lot of skin with it. It’s so frustrating because it’s impossible to avoid!

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

A: What’s that thing on your face? I hate that question. It makes me more self conscious about my tubes when I am already worried about them enough. If someone would say it in a kinder way such as, do you mind if i ask what those tubes are, i would be happy to answer.

Q: What is your favorite tubie product?

A: I love tubie clips! Craftingforacureco makes the cutest clips ever! (Link opens to their Etsy shop!)

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

A: I found that taping my tubes lower stops them from pulling on my nose and I can do more of my makeup! When I taped my tube on my cheek bone it really pulled on my nose and caused worse pressure sores. By taping them below my cheek bone it helped avoid that! And i can do highlight and blush now with no problems!

Q: What does your feeding tube mean to you?

A: They mean the difference between a miserable life and a more comfortable life. Without my tubes I would be vomiting constantly and my meds would get stuck in my throat, cause severe GI symptoms, and take hours upon hours to absorb. Although my tubes are a pain at times, they have improved my life so much. And hopefully soon my NJ will mean nutrition again!

Thanks so much for sharing, Rose! Next up, we hear from the lovely Sam! You can find her on Instagram @ibelieve693!3

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

A: Gastroparesis/malnutrition

Q: How long have you been tube fed?

A: Will be one year on February 12th, 2019.

Q: What type of tube do you have?

A: A MIC-KEY GJ-button

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

A: It’s not as scary as it may seem. It’ll take some getting used to, and it’ll take some time feeling comfortable with it but it’s not a death sentence!

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

A: I use the G for venting when needed!

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

A: It literally gave me my life back. Within a few months of proper nutrition, I was able to start running again, and felt stable enough to continue to do so! My hair and nails improved, I gained weight back, and began to feel stronger!

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

A: A few days after a tube change, I was really sick and vomiting, and ended up vomiting up my feeding tube. The part that was supposed to be in my small intestines was in the back of my throat. Super scary, and wouldn’t wish it on anyone! My doc got me into his office ASAP and I had it fixed within a few hours.

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

A: Being prepared, and always being attached to a backpack. I forget sometimes and just get up from wherever I am, and end up pulling on my tube. It’s annoying and heavy.

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

A: I haven’t come across too many problems or issues. The only uncomfortable situation I had was a women telling me I needed to go to the bathroom when I was discreetly attaching the tubing to my extension. You couldn’t see anything, my shirt wasn’t even lifted to see my stomach, all you saw was tubing. Her ignorance really bothered me, but otherwise, I haven’t had many issues.

Q: What is your favorite tubie product? Or a product you’re interested in?

A: TUBIE CLIPS. SO IMPORTANT. And port connection covers. They keep things from disconnecting!

Q: What does your feeding tube mean to you?

A: It gave me strength and freedom. I hope eventually I won’t need it anymore, but it gave me the chance to thrive, and allowed me to prove to myself that I’m capable of anything. Having a tube doesn’t stop you from living, it helps you find a way to live again.

Thank you so much for sharing Sam! Now let’s hear from Ansley! You can find her on Instagram @ansleymmccormick!4

Intro: When I was four I had a button style G-tube placed for an elemental diet to manage my eosinophilic disorders. At age 15 I started dealing with some significant motility issues so we attempted to swap my G-tube for a Mickey GJ button. We discovered that my anatomy is just as unique as me, and I can’t have GJ tubes. At that time I had an NJ placed, and had those on and off until fall of 2015 when we placed a straight J-tube. In Spring 2017 I developed a severe bleeding stomach ulcer that landed me in the ICU getting blood transfusions. My medical team thought my G-tube was worsening the ulcer, and their solution was to pull the tube. That led me back to using a NG tube for draining until Winter 2017 when they put the G-tube back after my MALS surgery.

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

A: Feeding tubes aren’t scary. They can be extremely intimidating at first, but they are there to help you flourish! They are not at all life limiting, but they are incredibly life changing in all good ways.

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

A: My G-tube is in me for the solid single purpose of venting and draining my stomach. My J-tube is really only being used for medications and hydration with very very minimal feeds. That’s because, well, I live the TPN life.

Q: Has your feeding tube helped to improve your life?

A: Yes! Simply because I would not be alive without my feeding tubes! I go to school, have friends, travel, and do so many amazing things because my tubes helped sustain me for such a long time.

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

A: Buried bumper syndrome!! Nobody ever could prepare me for that, and nobody did prepare me for it! It is a type of pain and annoyance that I had never felt before, I had BBS twelve times in three months before my surgeon finally relocated my G-tube stoma for the third time.

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

A: I still struggle with my outward appearance. It is really hard to love and care about your self image with multiple tubes coming out of me. I just have to remind myself how far I have come thanks to the two tiny tubes on my stomach.

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

A: I hate when people ask me when will I get to remove the tube. A much better question would be “How long do they estimate you will have a tube?”. Or “How long have you had your tube?”

Q: What is your favorite tubie product? Or a product you’re interested in?

A: I will forever love and appreciate tube pads. They are pretty, soft, earth friendly, and most importantly Ansley sensitive stoma friendly!

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

A: My favorite trick is flipping a infinity feeding bag upside down and pushing all the air out with the hand prime on the cassette. That removes ALL the air so I can throw it in any cute fashion friendly bag of my choice.

Q: What does your feeding tube mean to you?

A: My feeding tube means life and freedom for me. With it I can live just like anyone else!

I am loving reading and sharing these answers so much! I hope they are helpful to those of you with tubes whether you’ve had your tube two days or twenty years! So thankful for these ladies who volunteered to share their experiences!

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