Feeding Tube Awareness Week Features-Mellie+Allie+Kate

Hello! Happy last day of Feeding Tube Awareness Week! We are finishing off this week with three lovely tubie ladies who have shared amazing insights into their lives as humans with feeding tubes! Let’s not waste any time, welcome Miss Millie! You can find her on Instagram @thegirlwhocanteat where she shares more of her adventure!10

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

A: Gastroparesis

Q: How long have you been on tube feeds?

A: Around 5 years in total, I had to be on TPN for 2 years and even though at times it is a struggle with pain from the J feeds, I would much rather be a little more uncomfortable than to have to worry about infection constantly.

Q: What type of tube do you have?

A: I have a straight J-tube and also a G-tube that allows me to decompress air, etc.

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

A: That no matter how hard things may be, remember the importance of your feeding-tube, being different isn’t bad.

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

A: I do have a G-tube which is used for venting and recently was a huge help when I got an infection and lost the site of my straight J-tube, so we had to temporarily turn the G into a J until I was able to have surgery.

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

A: In many ways, it allows me to live free of getting sick constantly from food, so in the long run that allows me to have a much better quality of life, I can hang out with friends and while yes I still have my down days, my feeding tube is probably the thing that has given me the most relief.

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

A: The piece that goes in to close the tube port actually tore off and got stuck in the feeding-tube. It was the floppy kind. And can I just say, whoever made that thing used such crap material. Also, the time I was throwing up and the end of my J-tube started to come out nearly choking me.. it was not fun.

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

A: Waking up to intestinal bile all over the place, my intestine is very sluggish and so sometimes it builds up pressure and disgusting bile will be everywhere! It has happened to me at modeling castings before too.

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

A: I think the assumption that life must be horrible because I live with a feeding-tube. I always get asked if I think I’ll ever get better and it’s just not something I know. I used to be on TPN, and have worked hard to even get to this point. So I guess in a way, sometimes it feels like even though this is an improvement and what I consider to be my best, people still don’t think it’s enough. Acceptance, in general, would help. I think advocacy and educating others about feeding tubes makes a difference.

Q: What is your favorite tubie product?

A: Okay it’s not necessarily a tubie product, but I got a natural nontoxic barrier cream from Edible Beauty Australia it’s called “Mum and Bub barrier cream” and is only $11.52 USD (plus 20% off with code thegirlwhocanteat) it instantly relieves the pain I get when my tube site is super angry. Also the new Mighty Well backpack is just amazing so much better than what the pharmacy provides.

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

A: I recently started using syringes to compound my medications that are pill form you just fill it with some water put the pill in have the cap on and pull back, it’s like magic! I was going through like 2x pill crushers a month before!

Q: What does your feeding tube mean to you?

A: To have quality of life, my feeding tube to me is something that has allowed me 5 longer years I wouldn’t have had without it. I’m thankful for my feeding-tube and have been on a journey to have a better relationship with my view of my feeding tube. It’s beautiful really, when you think about it like a tiny little super hero. I didn’t know much about feeding tubes before needing one, I remember the resent I had towards mine in the beginning and now I just want to share awareness for the fact that a feeding tube saved my life and many others as well.

Thank you for those beautiful answers Millie!

Now let’s meet Allie! You can find her on Instagram @alliesjourneyofhope!Allie new insta size.png

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

A: Superior Mesenteric Artery Syndrome and Median Arcuate Ligament Syndrome

Q: How long have you been on tube feeds?

A: 1.5 years

Q: What type of tube do you have?

A: I had NG and NJ tubes for the first year, and recently got a GJ tube. Initially I had a long GJ but a few months ago I switched to a Mic-Key Button GJ

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

A: Feeding tubes seem scary at first, but they’re lifesavers. I was terrified before my first tube was placed, but now I love my tube for what it has done for me. My tube literally saved my life and I’m so thankful for it.

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

A: I use my tube for feeds, venting, and meds! Since mine is a GJ I use my g port for venting and medication and my j port for feeds.

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

A: Prior to having a tube, I was malnourished, exhausted, and weak. My tube has allowed me to get a lot of my life back and heal.

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

A: NJ and GJ tubes flip SO easily! My doctors told me that there was a possibility of that happening, but I never expected it to happen so quickly. For the first year I was getting my tubes replaced at least twice a month and up to 5 times a month. Each time it had to be under sedation since my SMAS causes placement to be really difficult so it was a major annoyance but nutrition was worth it!

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

A: I run my feeds 20-24 hours a day, which means I’ve been connected to a backpack almost constantly for over a year and a half. It gets frustrating to constantly have a reminder that I can’t eat like a healthy person and leaks are the worst. Waking up in a huge puddle of smelly formula is never fun.

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

A: It’s not really a question but I hate when people say that it’s gross. Sometimes I’ll have to adjust the gauze around my tube, or flush it in public and people always decide that it’s their place to comment and say how gross it is that I’m doing it in front of them. This tube is my lifeline and I’m not ashamed of it, so I will do what makes me comfortable wherever I’m comfortable. I honestly love when people ask questions, because it’s so much better to me than stares or rude comments. I understand that people are curious because I know feeding tubes aren’t something they come across often, so I love to educate them!

Q: What is your favorite tubie product? 

A: I LOVE Grip-Loks! They help keep my tube from tugging which is a lifesaver since I have a tendency to get my tube caught on everything from doorknobs to other people’s bags, and getting your tube pulled is never comfortable. I just wish home care companies would send more than one per week!

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

A: If your long GJ tube is having problems, see if they can switch if out for a Mic-Key or AMT Button! With my long tubes I had tons of issues with them clogging and flipping but I haven’t had a single issue since I switched to my button!

Q: What does your feeding tube mean to you?

A: My feeding tube means life and freedom. I literally would not be here without my tube, and I’m so thankful for it. My tube has given me so many opportunities to have a life again and as awful as it is to have to need a tube, I love mine. Yes, I wish I could just eat and not need a tube, but since I can’t my tube has become my lifeline and I love all it has done for me.

These answers are all so great! Thank you so much for sharing Allie!

Last, but certainly not least, my friend Kate! You can find Kate on Instagram @lemon.lyme.soda!11

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

A: Gastroparesis

Q: How long have you been on tube feeds?

A: 3 years previously as a child, 2 months currently

Q: What type of tube do you have?

A: My current tube is a GJ dangler.

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

A: If you’re planning on using the J part of a G/J for meds, you may want to get as many meds as you can switched to liquids. I ended up crushing lots of pills and clogging my brand new tube. The J portion tends to be much narrower and easier to clog than the G. Make sure you talk to your doctor about your meds and which route you should take them by before you go home from the hospital.

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

A: Yes, I can’t keep meds down so I use IV and sublingual meds sometimes, but most of my meds go in my J tube.

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

A: Before getting this tube I was on TPN for 3.5 months. This tube has been quite difficult to adjust to, but I’m grateful every day that it’s keeping me off TPN. 100 annoyances is nothing compared to the pain of sepsis and the fear of contracting it. Without TPN or this tube, I would have no way to sustain myself nutritionally. I can’t keep down sufficient oral nutrition so I would still be starving. Starvation feels empty and gnawing and terrifying. Getting nutrition back in my body has brought the color back to my cheeks and more energy back to my body and soul.

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

A: I so did not expect it to clog right away, and need to be changed quickly before it was done healing. That was really awful. I didn’t get much education about putting meds in it besides “crush the pills, put them in water, and push them in.” Now most of my meds are liquid and we’re very careful about dissolving the necessary pills in warm water.

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

A: Right now it’s the granulation tissue growing around my stoma. It’s been cauterized so many times, and it’s still growing back worse than ever. The tissue itself is uncomfortable but the cauterization can be downright painful.

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

A: “So you can’t eat anything? Do you eat pizza? I could never live that way.” Yeah, you could. You could if your stomach stopped working properly and you threw up everything you swallowed. You wouldn’t just keep eating pizza and throwing it up over and over indefinitely. Eventually you would understand that you have a limitation and can no longer do that. It sucks but you learn to adapt.

I much prefer inquisitive questions like “tell me more about your illness? What is that like for you?” But honestly I’m only okay with even those questions in certain, comfortable situations. Like my friends and family and doctors and nurses are welcome to ask me respectful medical questions. But personally (and others may feel differently than me), when I’m just at the hospital getting a scan or my blood drawn or something simple, and the tech starts asking me lots of questions about my illnesses or tubes, I get really uncomfortable. I don’t think it’s their right to know personal details of my life that aren’t relevant to their procedure. When you’re laying on an exam table and a tech is asking you a bunch of probing questions it can be unclear which ones they need to know for the procedure and which ones are them just being curious about your personal info. So you don’t know if you really need to answer or not. I’m often way too tired/stressed in those situations to want to answer more than the bare minimum of questions actually needed for my procedure.

Q: What is your favorite tubie product? 

A: I just got a product called “Granulotion.” I’m really excited that it might get my granulation tissue under control more gently than cauterization. I’ve only been using it a few days, so I’m not sure how effective it will be, but I have high hopes!

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

A: So this isn’t that creative but it’s hella practical. Baby wipes. Baby wipes everywhere. In your nightstand, in your car, in your bag. Things are gonna spill, leak, and get messy from time to time. I get the “gentle/fragrance free” ones so  I can use them to clean my tube site without irritation. I also use them to clean gunk off of my hands or clothes or really anything in an emergency.

Q: What does your feeding tube mean to you?

A: First and foremost, it means life. It means not starving. It means not constantly trying to force myself to eat and getting violently ill. It means not swallowing my meds and throwing them right back up (it’s both miserable, and makes your meds ineffective.) That’s been one of the biggest reliefs, not having to puke up pills all the time!

It also is a glaring reminder that I’m sick. It still hasn’t healed quite properly so everytime I move or breathe it twinges or stabs which means I can’t pretend it’s not there for even a second.

A huge huge huge thank you to all of the ladies (where the tubie men at for next year?!) for sharing these amazing insights to what it’s like to being a tubie, and giving tips to those who are already living the life! You have been absolutely amazing and I’ve loved getting to hear more of each of your stories!

Happy Feeding Tube Awareness Week everyone, until next year!

 

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