Anyone who has had to rely on feeding using a PEG or nasal feeder (nasogastric tube feeding) will know how boring and down right frustrating it can be, not to mention anti social and very time consuming. There is no preparation for getting a PEG or tube feeder, you either need one or you don’t. Once in, it’s sink or swim, in fact I was told I couldn’t swim with it, but later to find I could have if I’d been very brave.
I hated it, hate is a strong word, but I hated it. I did everything in my power to get rid of it. To be fair, part of the hate was the “food” or EN products I had to administer with regular monotony. Eight bottles a day (200 mils)
An elemental formula (nutritionally complete) which is standard world-wide , contains the following ingredients, along with “nutrients” :-Corn syrup, maltodextrin, hydrolyse corn starch, glucose, fructose, sucrose, corn oil, soybean oil, palm oil, casein, milk protein concentrate, sodium, magnesium caseinates, medium chain tryglycerides oil, fish oil, soy lecithin. I researched for a very long time to find those listed ingredients, that’s just what I could find out, no doubt there are other secret ingredients that may never see the light of day. So, to that end I thought I never use to put those things knowingly in my body and I am going to start the long journey back to eating by mouth.
The other issue with EN formulas is that if you have allergies to ingredients such as cows milk, soy proteins, corn or simply wanting a diet low in sugar you are in no mans land unless you blend your own. There are packet “real foods” you can purchase on line but when I crunched the numbers, you could pay your mortgage off with the amount you would need to spend on these “real food packets”. As an example 24 bottles of “real food” came in at $AUD228.00 that’s $9.50 for 250mls. No wonder (if you are fortunate) medical insurance covers the cost. Personally I would not have been able to afford it.
This brings me back to blenderised diet. I never use to eat that much sugar and I understand it is there for a purpose but 12 months in, I had had enough. I wanted and craved more variety, fibre and phytonutrients. I also wanted some freedom from syringes, bottles, privacy to eat. First I had to teach myself to swallow again and I had to have a plan of how I was going to get the PEG out.
I wrote a book about my journey and how I transitioned from PEG back to oral eating, what I cooked or blended, how long it took me, how I covered the nutritional requirements with little to no guidance. Maybe I wasn’t a special case, and I’d advise you get the ok from a registered dietitian before you embark on the PEG less journey. Transitioning is not easy and it’s not quick. There are such things as ‘transitional ‘ foods (who would have thought!) I discovered these on my own and still use them to present day.
Below are some notes I received from my care team. I only just noticed this advice as circled. I think there needs to be more or better information about how and what your tube feed can encompass, although I didn’t add any other liquids and really pushed on eating orally, for long term tube feeders despite not being able to “taste” I think having fresh food is particularly good for your mental health as much as everything else.
I can’t describe how much better I felt after a few days of eating ( think smoothies) fresh blended food. For those that need a refresher here is the link to the Australian dietary requirements. Pretty much everything on the “naughty” list is out for me, the trick is working out a sustainable and easy way to get these groups in your diet. I can help you there, I worked up a course to help you transition from PEG to mouth. Contact me to find out more. Contact Form