TPN and Tube Feeding: care, tips, and more

by Mighty Well

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We often think of eating as an integral part of human existence. But for many people with GI challenges, eating and drinking may not be the best way to get nutrition. If you find yourself facing alternative nutritional support, it can feel overwhelming! There are many resources available, however, and many other people going through the same challenges. Here are some tips to get you started.


Before needing a feeding tube, you may not have known that there are several different types! Each one is used for different purposes. To understand the different names, here’s what you need to know.


No one expects to end up with a feeding tube, and your first experience can come with a large learning curve. We know the feeling, and want to help lower these barriers! Here is what we wish we knew going in.


Feeding tubes can be a lifesaver – literally. They enable our bodies to absorb the nutrients we need to heal. While tubes are wonderful interventions, they can also come with a risk of complications. So if you are going down the enteral nutrition road, here are a few complications to look out for and tips for avoiding them.


Organizing and carrying around medical supplies, including IV bags, pumps, diabetic supplies, and extra tubing, can add unnecessary stress to patient lives. That’s why we designed the Mighty Pack, the first medical backpack designed for patients, by patients. It’s the perfect versatile solution for patients looking for an IV infusion or feed backpack that can hold everything you need for a day on the go!


Getting a feeding tube comes with a lot of baggage — literally!

Administering feeds requires a lot of gear. There are the staples – feeds, pump, skin barrier and cleaner – that are crucial to tube feeds. But there are many other products that can make life so much easier! We’ve asked our tubie friends what gear made a difference for them, and compiled this list of recommendations.

With any chronic illness, going out can feel daunting. What if something happens that triggers my symptoms? What if I encounter people who don’t understand or who actively make me feel worse about being sick or disabled?

The sticking point for me is typically the gear – there is so much STUFF involved in keeping my body functioning, that it’s overwhelming to try to bring it all with me.

Navigating tube feeds on the go is tricky, especially for first-timers. We chatted with Erica, one of our Friends in the Fight, about her experiences getting out with a tube:

 


My name is Gracie Gardner, and I’m 16 years old, living with Idiopathic Gastroparesis. One of the most difficult aspects of having life-sustaining tubes stuck to your face is that it comes with a constant fear of judgment. Instead, they did the exact opposite. After my first day out and about with my tubes in, I quickly learned that the most important part of accepting my illness was for me to have confidence in myself— and that’s exactly what I did.


A feeding tube isn’t a tool of convenience nor is it a sure sign that someone is terminally ill. A child doesn’t get a feeding tube because he or she is a picky eater, either, there are many underling factors.

A feeding tube is a life-saving medical device that tends to make others uneasy. It’s OK to be curious about it, though, because when you ask questions, you help raise awareness. Consider a few truths people with feeding tubes would like you to know.


Whatever your body’s journey has been, whatever visible reminders linger on your skin, don’t forget to love yourself for who you are today!

We all have heard of the iconic fashion event, the “New York Fashion Week”. Held twice a year; models, designers, hair and make up artists, and photographers flock to the Big Apple to showcase their talents. This overflow of art and talent is such a spectacle to watch.

So many spend their life dreaming of even witnessing NYFW. As a model myself, it has been a huge goal for me to have the opportunity to bring diversity in such a prestigious event.


We first connected with Kayla after our 2019 Mighty Pack giveaway with our friends at Kitchen Blends. Kayla lives with a feeding tube, and completed this interview from the ICU last week, so we are extra grateful to her for sharing her story with our community!


Swapna Kakani was diagnosed at birth with a rare chronic disease, Short Bowel Syndrome. For 27 years, Swapna has lived with supplemental intravenous nutrition and a feeding tube (from 0-24 she had a gastrostomy tube and from 24 onwards she has had an ileostomy).

This lifelong battle with chronic illness has also led Swapna to become a passionate advocate and public speaker, raising awareness about the experience of life as a patient and overcoming personal adversity.


I’ve suffered from a chronic illness my whole life. I have Gastroparesis, which causes the muscles and nerves in the stomach to not function properly, causing my stomach to not empty properly. I have had numerous NG tubes, NJ tubes, a GJ tube and I have had my second J-tube for almost two years. On top of my feeding tubes I have had PICC lines, and I am currently on my fourth PICC line. Due to my chronic illness, I am currently NPO (nothing by mouth) and have been since November 2014.


I have worn a backpack for my nutritional needs since I was a child. My backpack always was a part of me, but it never defined me. Wearing a backpack all day everyday was my normal.  

I went to school from Kindergarten through college with 2 backpacks. One for my school books and one for my enteral feeds. I was known as the backpack girl or the girl with the backpack.


At Mighty Well, every one of our models has had personal-lived experience with chronic illness. By sharing their stories, we hope you will see how each and every Mighty Model is working to turn their sickness into strength.

Today, we are excited to feature the story of Shannon Maguire: Mighty Model and Gatroparesis warrior, who has not let her illness slow her down.

Learning to thrive with a chronic illness is a team effort. You may need specialists, non-traditional or non-medical practitioners, a PCP to see the big picture, and then everyone (medical or not) who cares for you at home. And yet telling you to just build a team of providers and caregivers is not so simple. Care teams work best when each member is a good fit and addresses a specific part of your journey.

Interested in building a care team for yourself? Here are some tips to get you started on the right foot:


I was diagnosed with Chronic Neurological Lyme Disease during my sophomore year of college. I needed a long-term IV PICC line that a lot of people get either for antibiotic use, chemotherapy, or nutritional support. I was just told to wear a cut sock on my arm, and I was like, “This is crazy!”

My dad, who is in the surfing industry, told me I should put a rashguard over it. So that’s how we got the idea to apply athletic fabric to the medical industry. That’s how Mighty Well started. It was an answer to my needs as a patient.


Being immunocompromised during cold and flu season is already stressful enough, and the global spread of a highly infectious virus adds significant anxiety as well as the need for further precaution.

If you are feeling additional stress during this uncertain time, Mighty Well and your Friends in the Fight are here to support you as you make decisions about how to best manage your health and wellbeing.

Here are five chronic illness specific tips for navigating the COVID-19 outbreak.


Living with chronic illness can significantly impact your confidence levels and change how you look at yourself. It’s common to feel as though your body has ‘let you down’ or ‘is broken’. These beliefs understandably make you feel less confident within yourself.


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Got more questions about TPN and Tube Feeding?

Join us in our Friends in the Fight Group to connect with our community.

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