Blenderized Tube Feeding by J Tube: Nic’s Story

Blenderized Tube Feeding by J Tube: Nic’s Story

woman standing outside surrounded by chickens

I’m an urban hippie on wheels. I live on a small piece of paradise on the west coast of the North Island in New Zealand. I’m happiest in gumboots in my garden, hanging out with the Backyard Hooligans (chickens) or racing down the road in my power wheelchair with my dogs.

I like to keep my footprint light, and I’m at my best in nature. I make all my own household cleaning products, body care, apple cider vinegar and toothpaste. I always have something fermenting and my kitchen table is always covered in new seedlings. I don’t think it was a surprise to anyone that I decided to make my own tube feeds too!!

I have a plethora of health issues that stem from Musculocontractural Ehlers-Danlos Syndrome and in 2015 gastroparesis was added to my diagnosis list. It hit me hard and I lost 25kg in a few months, leading me to get my first PEG-J tube in 2015.

When I first got my tube I used both standard and peptide formula but it made me feel gross. It caused pain and increased nausea, and I was tired and lethargic. I made noises back then about using real food, but was told I couldn‘t do it.

Thanks to a new medicine I started, I did better for a couple of years and was able to eat and drink more. I didn’t need my J tube and just used my PEG as background hydration. However, I was slowly declining and around 2020 I needed to start jejunal feeding again.

I was REALLY hesitant to use the formula, but I was extremely underweight and needed those calories. I told my team that I was going to use it temporarily to get my weight up and then go on a blended diet. They gave me all sorts of reasons why it wasn’t possible. I used to be a RN and had lots of background knowledge so I did my own research and found there were no valid reasons why I couldn’t use a blended diet in my J tube safely.

The tube is just a tool.

Like anything, it requires looking after but really isn’t some high-tech device. It’s just a conduit to get nutrition in, and using formula isn’t always necessary.

woman blending at kitchen counter

I initially started with formula, but struggled to get consistent nutrition. My tube constantly migrated back into my stomach, and each time I would commence feeding with the formula I would get refeeding issues. It was really unpleasant so I read about the chemical changes that happen during refeeding, and how I could make it better by blending meals with less sugar and decided to start blending earlier than anticipated.

I told the dietitian that the formula was good for my garden, and my Backyard Hooligans and dogs loved it, but it wasn’t working for me. She told me that blending wasn’t something they could be seen to be supporting and that I was going against medical advice, so I was discharged from the dietetic service.

Growing up with disabilities can be a real super power. Lots of conventional ways of doing things don’t always fit me, and I have become a bit of a trailblazer, looking outside the box for ways around an issue. In this case, I wasn’t willing to live suboptimally, on ‘food’ that made me feel gross, so I worked out alternative methods and I haven’t looked back.

Although starting out wasn’t easy with absolutely no support, I knew I had the know-how to figure it out. I started with easy to digest vegetables like cooked zucchini, silverbeet and pumpkin mixed with soy milk. My tube kept flipping so my nutrition was quite inconsistent, but I settled into a routine of blending when I could.

It wasn’t until my whole tube was repositioned in October 2021 directly next to the pylorus, that I really got into a groove. I’ve had 18 months of solid nutrition, which consists entirely of blended whole foods and nothing artificial. It took me longer to gain weight due to the low carb blends, but I’ve not had refeeding issues since and have gained 17kg of gorgeousness!

woman holding eggs

Over time I have become a self-confessed tubie foodie. If it’s edible, it’s tubable, and my jejunum has become an extension of my stomach and I blend anything I would consume orally.

I love learning how whole food can support and fuel my body, and I’ve done a lot of research on how to consume foods that may not typically be eaten orally but are full of nutrition.

I blend up edible weeds such as purple dead nettle, dandelion, chickweed, plantain, fresh aloe vera and kumara (sweet potato) leaves. I’ve learned eating orally has certain protective mechanisms, for example you wouldn’t necessarily eat a whole cup of dandelion leaves, so I wouldn’t tube that much either!

My diet is far superior to anything you would even eat orally. I blend mostly wholefoods but have recently started using Wholesome Blends for when I’m on the go or don’t have the energy to do an extravagant blend. 

I think about tomorrow’s blend like you would tomorrow night’s dinner. I blend daily and store in glass jars in the fridge, topping up my flocare container as needed throughout the day. I try to keep my feeds balanced like you would orally, using carbs, fats and protein. I use lots of herbs and spices for different antioxidants (NOT for taste!!).

I have to structure my meals a bit differently with the J tube, as I’m unable to bolus the volume of what you would eat orally. This also makes using set meal recipes more difficult, so in the beginning I used chronometer and MyFitnessPal apps to make sure I was getting enough of the right nutrients, as I’m blending for nutrition, not taste.

My feeds run 24/7 and I keep the container in an insulated lunchbox that has two ice pockets on both sides. This goes inside my backpack that I haul around with me everywhere I go! I’ve never had an issue with foodborne illness. I change the ice packs every few hours and the sniff test is good. The flocare container smells the same as it did when I pour directly out of the fridge.

woman with blender

My biggest challenge has been getting the consistency right, and still making sure I get what I need. The blend will always thicken in the fridge and it also has to go through a pump so I have to be really careful that it’s thin enough.

In the beginning, I didn’t always think it through and I would blend way more than I should, and it would end up a big gloopy mess! I would have to add extra milk to thin it out which isn’t ideal as watering it down too much means I get less nutrition in a day. Now that my weight is stable, I can handle a day or two of thinned out feeds. But I have learned to be more organised and careful with what I blend!

It would’ve been AMAZING to have had support in the beginning, as it was a huge learning curve and I’d be lying if I said I didn’t struggle at times! Having recipes to follow would have been really helpful. But I have it all figured out now and it’s genuinely a breeze and a process I enjoy!

I am obsessed with the colour of my fruit and veggies, and will usually have a bite or two before throwing in my amazing Optimum G2.6 blender. Home grown produce always tastes so good and I’m stoked I get to reap the benefits, both orally and through my J tube. It also keeps me connected to my community, as I’m always sharing my produce with my neighbours!

My blends are completely customised and I can concentrate nutrients depending on what I need at the time. If I feel a bit sniffly I will make my blend really high in whole food vitamin c to support my body, and I haven’t been ‘normie’ sick in years, with no colds or flu. I have been able to navigate severe malabsorption by modifying my blends in ways you wouldn’t be able to solely on commercial formula. 

I’m not anti formula. Fed is always best, but I do believe the quality of nutrients matters. That will always be real food (also acknowledging here that I have access to all the best resources), but I don’t believe we can optimally survive on the sticky brown liquid long term. Our bodies are incredibly complex and the role of nutrition is paramount in maintaining good health.

Tube fed or not, we can all get sucked into a suboptimal diet and therefore accept suboptimal health, not realising that things could be better. Often too, we are so malnourished by the time we get a feeding tube that anything is better than nothing.

woman in garden

Food is way more than just fuel and it doesn’t always have to be medicalised. It’s more than counting calories. Food is love and connection. My blends mean the same to me as a home cooked meal!

There aren’t any negatives, except that it takes longer than hanging a bag of formula. But there is so much beauty in the process of planting the seed, nurturing my garden and ultimately blending what I grow. Formula would be much easier for sure, it would meet my exact nutritional requirements but not actually feed ALL of me, like my blends do. 

Going to the supermarket, preparing and cooking food is a normal activity that is often missed when using just formula. Blending has given me a joy for food again. It’s medicine and love, and I get to experience it all through my j tube.

Written by: Nic
Instagram: poweredbyplantsandplasmalyte

If you are considering trying a real food, blended diet for yourself or your tube fed loved one, you won’t want to miss out on these 5 steps for getting started to eliminate the learning curve.

Have questions? Let’s connect on Instagram! Send me a message to get in touch and follow along for weekly tips, tricks, and a supportive network that will make your journey easier.

*Disclaimer: The information and education provided here is not intended or implied to supplement or replace professional medical advice. Always check with your own medical professional before trying to implement any information provided here. 

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