I am so grateful to Nic and Rachel for sharing their experience using homemade blended food for J-tube feeding. Nic and Rachel live in the beautiful Taranaki region of New Zealand and have a passion for animals, nature and sustainable living. They met through the New Zealand Ehlers-Danlos Syndrome Support Group and coincidently both have J-tubes. Ehlers-Danlos Syndrome is a complex connective tissue disease with a wide range of symptoms including digestive problems.
Nic and I got in touch through Instagram when she asked me a general question about the need for food to be sterile (therefore only formula) in order to be fed through a J-tube. I responded with something along the lines of - Well, feeding tubes themselves aren't sterile, so nothing you put through it can actually be sterile, and our small bowel isn't sterile (we are inhabited by vast numbers of microorganisms) so in my opinion, food should not have to be sterile to be fed through a jejunostomy. More on that, is my recent blog post "Blended Food & J-Tubes". For some time now, Nic and Rachel have been using homemade blended food for their tube feeding...using sustainably sourced vegan staples, and produce grown in their own garden. I certainly appreciate their environmentally conscious approach to tube feeding and their enthusiasm for animals and nature in their every day life.
Thank you so much to Nic and Rachel for your contribution to the Natural Tube Feeding Blog!
Claire
Nic & Rachel's Story
Written by Nic
"Let food be thy medicine and medicine be thy food" Hippocrates
I’ve always been very conscious of what I put into and on my body and have always seen food as medicine, so it is not surprising that I would choose to continue nourishing my body with real food, regardless of whether a fork or tube is used.
I was born with arthrogryposis and was tube fed as a baby but then enjoyed food with little consequence until the age of 34 (2014) when I developed gastroparesis. That diagnosis was the cascade that led to the ultimate diagnosis of Musculocontractural Ehlers Danlos Syndrome. I live with a number of serious comorbidities, including Digestive Tract Paralysis from oesophagus to colon. Thankfully I can eat very small amounts of foods mainly consisting of rice crackers, sometimes potatoes and toast, but this doesn’t give me the nutrients my body needs. I have been told I need an ileostomy, and my entire intestine does not move without significant intervention, and this makes me really sick.
I got my first GJ tube in 2015 and did not tolerate the feeds. I didn't like the ingredients either, but didn't realise I had a choice, as I was told that blending into the J couldn't be done. That led to massive hesitance for using formula because I felt so gross on it. I ended up living on toast for a couple of years before things became much worse and I needed proper J feeding again. I knew I was going to blend, and managed to get a brand new Optimum G2.6 blender through my disability funding. The blender sat there for ages though, as my tube continually flipped out of position and/or I had multiple failed placements leaving me without nutrition for months.
In Jan 2021 I was at my lowest all-time weight. I felt revolting. I agreed to go on formula just to get my weight up and stable, telling my dietitian that once I was better I would go to a blended diet. However I was having major issues with my GJ tube. I was in and out of hospital and feeding was really inconsistent as the tube just didn’t want to stay in the right place. I didn’t feel great on the formula. I was irritable, what I can only describe as ‘jittery’ and had lots of refeeding issues. It also caused a lot of pain and just generally didn’t make me feel like food should make me feel. I ended up in hospital with an ileus and knew I couldn’t go back to formula, so I decided to bite the bullet and start blending early.
I received no support from any health professional. I was told it could not be done and that it was “against best practice”. They would only help me if I decided to feed myself with something that made me feel gross, but not if I was going to use real food into my jejunum. I was discharged from the dietetic service very underweight. I really wanted help and was desperate to feel better but had absolutely no idea where to start, but I am resourceful and used my knowledge as a nurse as the basis to devour everything I could about digestion and tube feeding. I had to trust that my body could thrive on real food, albeit with a bit of alteration in the delivery!
I spent all my time lying on the couch, hooked up to my IV fluids, researching recipes, blogs, and watching YouTube videos. I read about enzymes, absorption, anatomy, motility, gut bacteria (absolutely fascinating) and delved into dietetics. I read about macros and micros, minerals and phytonutrients and the foods rich in these nutrients. There was almost no information on the actual blending, but enough to get me started. I cooked some zucchini and blended it with water. It went through well. I started adding more and more, experimenting with random ingredients, writing down what I blended and how it made me feel. I used the My Fitness Pal app to gauge nutrients and keep records of my blends. I don’t need to use this app anymore as we're in a groove now.
I had been blending for about a month when Rachel got her first GJ tube for gastroparesis. She was put on the same stock standard formula and did not feel good, so I suggested she try some blended feeds. I made her the same zucchini and water blend which she tolerated well.
We are now exclusively blending vegan wholefoods, administering via our J-tubes and THRIVING.
As we’ve become more comfortable with blending, we’re far more adventurous with the ingredients, and there isn’t much that we don’t tube. We’ve discovered that about 60ml wine down the j tube has the equivalent effect as 2 glasses of wine orally. Fun experiment to do but be careful not to overdo it!
A big positive of blending is the ability to customize our diet. This means LOADs of variety and dietary intolerances can be dealt with (vegan, gluten free, low sugar, no refined ingredients). We belong to an organic food co-op where we get our bulk ingredients such as lentils, soy milk, hemp protein powder, peanut butter, quinoa, nutritional yeast and seeds, and we either grow or source locally most other ingredients.
We source lots from our own organic garden. We thoroughly wash and spin dry leafy greens, dehydrate and make a powder out of silverbeet, spinach, kale, plantain, dandelion, kumara (sweet potato) greens, cleavers, nasturtium, mint, chickweed and parsley, kawakawa (this changes all the time). Alternatively, we cook, blend and freeze produce in glass jars, and defrost when we want it. The blends are thicker than formula but smooth. We collect every drop of the leftovers from the feed bottles and blender and give either to the dogs on their dinner or feed it back to the garden (this way everything thrives!).
The fats we use include EVOO, avocado, full fat soy milk, peanut butter, soaked seeds, coconut milk. Fruits such as canned peaches/pears, fresh pineapple, cooked homegrown apple and rhubarb, feijoas, bananas and watermelon are also on the menu depending on season.
We add herbs and spices in each blend (using each for their medicinal qualities), along with spirulina and have only recently discovered several ayurvedic supplements to improve mental health, bowel function and overall vitality – so far, the mix of triphala, ashwagandha, neem, moringa, shilajit and fresh homegrown aloe vera in each feed have been fantastic. There is a fair amount of preparation time when making our blends (compared to just hanging a bag of formula, however it takes no longer than cooking a basic meal for us. About 25-30 min daily for us both. Quicker than the drivethru!
We have both had our GJ tubes resited laparoscopically in the last few months to ensure the tube is as close to the pylorus as possible, as we’ve both had major issues with our tubes migrating back into the stomach. Since the surgeries our tubes have remained in place and our food intake has been the most consistent it’s been in years! We have a Cook PEG J size 24 but we’ve both fed blended feeds through button, dangler and NJ tubes of various sizes with no issues. Due to our bowel motility issues, we have difficulty tolerating high rates of infusion (whether it's blended food or just water) so we run our pumps are 50 mL per hour. Compared to formula, hang time is greatly reduced, so we always keep our feeds on ice, or refill the bottle every 2 hours.
As time goes on, we just feel better and better. With the sustained feeding, we’ve both gained much needed weight, with no infections or issues at all except good health, glowing skin, improved gut function and mental health. I clogged my tube for the first time ever just two weeks ago when I used a Ninja bullet blender instead of my Optimum blender and didn’t strain it. I learned my lesson. If using anything other than the Optimum blender, everything needs to be strained!
It’s been hard figuring this out with no help. I would have gotten a lot out of having dietitian input in the beginning, but in the end it’s worked out well. We don’t count calories anymore or track our weight. Our improved lab readings, visible weight gain and overall vitality is enough proof that feeding a blended diet into the jejunum is possible!
Our bodies are incredible machines and Ehlers-Danlos Syndrome comorbidities can really knock us around. There's lots we can't control with chronic illness, but this is something we can! The basis of good health is nutrition and we're going to give our bodies the best fuel there is. REAL FOOD.
Written by: Nic Smith
Connect with Nic and Rachel:
Instagram @wheelywives
Email wheelywives@outlook.com