I am so happy to have Hannah Setzer share her story on the Natural Tube Feeding Blog! She is an incredible person and I’m so grateful to count her as a friend. Hannah has an inspiring instagram account called "feedingtube.fitness" where she shares her fitness journey and gives an honest account of life with a tracheostomy and feeding tube. Hannah works as a Disability Rights Advocate and seeks to make the world a more inclusive place for all. ~Claire
My name is Hannah and I am 28 years old and have been fed exclusively by a G-tube feeding tube nearly every day of those 28 years. I got my G-tube placed when I was just 1 or 2 weeks old in the NICU. I started off eating my mom’s breast milk and pretty quickly transitioned over to PediaSure. I was on PediaSure, six cans a day, for 18 years. There was nothing else in my diet. Solely PediaSure, two cans three times a day for 18 years. It didn’t stop there though, when I was 18, which is five years past the recommended age for PediaSure, I transitioned to Ensure, the adult version of PediaSure.
For 24 years my ENTIRE nutrition came from 6 aluminum cans of artificial food a day. I’m here today, 5 years later writing this blog so it did sustain me. I gained weight and was never labeled ‘failure to thrive’. I am naturally a smaller framed person and have always been slightly underweight but I was able to go to school, participate in extracurricular activities, and have a fairly normal childhood aside from other medical issues. I have a medical condition that affects my lymphatic system and have many cysts in my head and my neck. These cysts are through all layers of tissue, muscle, and fat in my head and neck and are unable to be easily removed. There are probably thousands in total. These cysts would often get infected and my cheeks or neck would swell up, become very painful, hot to the touch and red and shiny. I would have to have intense antibiotics via shots in my butt or IV. These infections happened often in my childhood. There didn’t seem to be any rhyme or reason why. Now that I’m older I can pinpoint some triggers such as stress, extreme overexertion, my menstrual cycle, or blunt force trauma (which clearly doesn’t happen often but kids will be kids and sometimes accidents happen!) I have very vivid memories of having to get 2 shots in my butt several times a week when I had an infection or having to sit in doctors offices waiting to get antibiotics because another infection flared up. Feeling bad about once a month became the norm for me, I didn’t even think that there could be anything else out there. I was on Ensure until age 24 when some knowledgeable health and wellness friends sat me down and told me there had to be another way.
With the help of three friends and a chiropractor I slowly transitioned to blended food. Let me stop here and say that working with smart, wise, and experienced people like Claire is a MUCH better approach than what I did. I worked with a chiropractor, who was well respected and trusted, but had no experience working with clients with feeding tubes or blended diets. He was misguided, misinformed, and honestly very reckless with the care he provided me and it came with a cost. I went from about 1,500 calories a day via six cans of Ensure, to about 400 calories a day because he put me on protein powder and coconut milk. Literally. That was the thing I was told to eat to get off Ensure. Here is an entry from my blog on October 31, 2013 “I've started making my own food. Specifically, I've stopped eating sugar. I started three weeks ago and I've replaced 4/6 cans of ensure daily from my diet. I had really bad sugar withdrawal headaches. I was grouchy as crap. I demanded more from the people I love than I ever should. I'm mostly past that point but it is hard”.
The sugar withdrawal was real. It was HARD. At the time I blamed everything on going through sugar withdrawal but now I can clearly see that I was also INSANELY malnourished and the brain fog, exhaustion, and mood swings were due to starvation, not sugar withdraw. In that two month time period I stopped seeing the insane chiropractor and my three great friends and I literally spent HOURS plugging things into MyFitnessPal app to try to create recipes for me. I scoured the internet and there was no options. No one was creating real food for people with feeding tubes. There weren’t resources so it was literally just a shot in the dark every day to try to blend things that would give me protein, fat, and carbs to sustain my body and help me thrive. I was committed to not going back to Ensure. We sat in coffee shops, cars, parks, kitchen tables, and spent many tear-filled days trying to create recipes that would work for me. Five years later I still use the basis of that recipe we created to eat every day.
Five years later I can confidently say I am healthier than I have ever been. I sleep well, I have mental clarity, I can move my body every single day, I am able to gain muscle and eat more calories than I ever have. I eat real, organic foods, and in the past 5 years I have gotten infections in my cysts four times. Not four times a year, four times total in five years.
Real food is best ya’ll. I know it’s scary to make the transition but it’s worth it. There is nothing more important than how we fuel our bodies and what we use to fuel them is so important. I hope my story helps you see how much what we put in our bodies affects us. For me it was the difference between 12 infections a year for 24 years to four infections in five years. I am so grateful that PediaSure and Ensure kept me alive for 24 years to realize that there was more for me.