Kenna

“Never be afraid to ask questions, connect with other Tubies and don’t be ashamed of your tube! Your tube is helping you and nourishing you! ”

I first got an NJ tube in December 2019 as a result of me being unable to maintain nutrition due to my gastroparesis. I only had the tube for a few weeks, as I had it taken out so I could finish my last semester of nursing school. I then had surgery for my gastroparesis in February of 2020 that helped me maintain nutrition for a while. However, my symptoms returned and started to worsen, I eventually became unable to maintain nutrition again and got a GJ tube in February of 2021 and I’ve had that tube ever since. 

For me, unfortunately there weren’t many positives for me during that time. I hadn’t gotten used to the tube since I had it for a short time and I never found the rate and formula that was right for me so the whole experience was very uncomfortable. However with my GJ tube things went better! Recovery was rough and long but eventually I got in a groove. Four formulas later and a bunch of trial and error, I found my “golden” formula and rate that worked so well for me. I found a formula that my body was able to tolerate, digest and absorb without causing too many symptoms. I eventually learned how my stoma preferred to be cleaned, what creams it liked, how it liked to be secured etc. There are so many different things out there to help make tubie life easier, you just have to find what works best for your body! When it came to my tube feeding journey, I have always felt lucky because for the most part things have gone smoothly without complications and with my nursing background, I always felt comfortable and knowledgeable about the operation and use of the tube. For those that don’t have a background with feeding tubes, never be afraid to ask your doctor, dietitian, or even your supply company questions! There are tons of videos and facebook groups out there as well that offer support. I also personally decided to share my journey about living with a feeding tube on YouTube as well, just in case it would help anyone!

When I first learned I would need a feeding tube, I was scared but also relieved. I was terrified over the thought of having a tube surgically placed in my abdomen. I was scared of the surgery, of the pain and the alteration to my body. It all felt so permanent and like this is what my life would be like forever. Another part of me felt relieved because I was trying so hard to fuel my body the best I could but the condition of my GI tract was making that so difficult. I was so exhausted from trying to force feed myself and deal with the awful symptoms that came along with it. I was perpetually exhausted and felt my body slowly being drained of everything. I knew I needed help but didn’t know exactly what I needed so when my doctor came in and told me that I was getting a GJ placed with a one day warning, while scared, I was also relieved to start feeling a little more alive again.

While I definitely still get frustrated with my feeding tube, I truly do see how much of my life I have gotten back because of it. I have energy to do stuff I love again and I am not nearly as exhausted and run down as I used to be. My feeding tube has also led me to one of my biggest passions, which is my business. While I wish I didn’t need a feeding tube to discover my passion, I can’t help but be thankful about where my feeding tube journey has taken me. My dream is to one day continue that journey and passion of helping other tubies as a tubie graduate, but for now, I am going to learn to embrace my tube, and my story as much as I can for what it is right now. 

If I could give my past self some advice, I would tell myself that there is no reason to fear the tube as my doctor knew that based on all my circumstances and past treatments I have tried, that this was truly the best option for me and my health and it was the best chance at giving me my quality of life back. A tube is not the end of the world. It also doesn’t have to be permanent and it has the opportunity to help so so much.

Advice I have for a newbie tubie is to take things one step at a time! Adjusting to a tube, whether it is surgical or nasal is so hard. It is uncomfortable and it is a visible change to your body other people will notice and likely comment on, which can be so scary. Never be afraid to ask questions, connect with other tubies and don’t be ashamed of your tube! Your tube is helping you and nourishing you! Getting additional help even if it may look different than someone else is something that you should never ever be ashamed of. Also, connecting with other tubies helps some of the loneliness and isolation that can come along with getting a tube! Sharing your story and listening to other peoples’ stories helps you feel like there are other people who understand the trials and tribulations of being a tubie. Making connections with others who have a similar story as me helped me more than I ever thought. 

Other thoughts for fellow tubies are that formula and rate can make a big difference!! For the longest time, I thought my body just could not handle any tube feeds. I felt so defeated because tube feeds would make me feel almost just as bad as regular food. I tried two different “regular” formulas and two different peptide formulas, and out of those four, my body only liked one of the peptide formulas, but finding that formula and the rate to run that formula truly saved me! I have been on the same formula and rate for a year now and my weight is back to where it was before I got sick again, and my labs have all consistently looked good. If you aren’t tolerating feeds well and haven’t tried other formulas, definitely reach out to your doctor and/or dietitian to ask about that!

Being a tubie is hard and frustrating a lot of the time but it is not all bad! I am personally on continuous feeds and I often find myself frustrated that I am constantly attached to a “leash.” I feel like I can’t just roam free and live my life but then I have to stop and remind myself that this “leash” IS the reason I am living my life. I really wish I didn’t have to have it to fully live my life, but at the stage of life that I’m in right now, I do need it. It brought back the ability to have joy and passion in my life again. I was able to get off of “survival mode” which is so exhausting to be in. 

My favorite place to use the FreeArm has been when I am traveling! I recently brought it on a little weekend trip and it was so helpful. I didn’t have to lug around an IV pole and was able to just set up the FreeArm on the bedside table as I ran my feeds overnight. It was so stable and easy to set up and my pump didn’t beep once overnight! I love that it is portable and light and so easy to bring anywhere! Especially while you are out and about and need a place to prop up your pump and feeds!

Kenna is the owner and creator of Threads of Kindness, a shop with the mission to spread kindness and joy and help others feel confident, beautiful, and less alone in the world!

My business actually started by accident! I first bought tubie pads as a way to cope with my recent life changes. I got my first sewing machine in the summer of 2020 but never did too much with it, so I really wasn’t good at sewing. However, due to having to quit my job for health reasons I had more time to learn to sew. My fiance actually encouraged me to try to learn how to sew my own tubie pads as he saw how excited they made me. I always loved fashion and putting outfits together so incorporating that passion into living with my tube helped me cope. So my fiance took me to the craft store one day to get all of the supplies and I spent a ton of time teaching myself how to make tubie pads. Eventually I was able to figure it out and made some for myself. I decided to share that I was able to make them for myself on TikTok and a few people actually expressed interest and were wondering if I would ever sell them. I immediately thought to myself, no way, I am not good enough for that. I could never do that. But with more practice and a ton of encouragement from family and friends I finally took the leap and started my business in May of 2021 not knowing where it would lead me. Over time I improved my skills and slowly started working on new things and growing! One of my favorite things I started making was matching three piece tubie sets! They include a tubie pad, a tubie clip and a connection cover. Not only are they useful but they help me feel so much more confident in my tube and I have an option to match every outfit, and even have holiday ones! My fiance has been my biggest supporter and was always the person encouraging me to try new things in my business. Eventually he gifted me a Cricut and I learned how to make stickers. So I started making fun stickers related to my chronic illness and personalized pump stickers for the infinity and kangaroo pumps! I then got a heat press and learned how to make tubie tape and heat pressed sweatshirts and now the latest thing I got was an embroidery machine to make cute embroidered t-shirts and sweatshirts! I never imagined this is where my business would end up when I started it almost a year and a half ago. I am so thankful for all the support I have and for all the connections I made as a result of it. I have never felt so passionate about something and it is truly something I love doing every single day. I feel so so lucky that this business and everyone who supports my business is a part of my life.

You can watch for exclusive shop drops on Kenna’s instagram and her website.