Byline: Tom Dawson, an expert world traveler and tube feed user, has contributed blog posts to the NFOSD to raise awareness about traveling with a feeding tube. His prior posts include: A Moveable Feast (11/25/16) and Traveling Space Available II (6/20/17), Report from Old Greenwich (9/10/17).
October 10, 2018
I’m in the capital of Croatia today. Zagreb is a very cool, remarkably clean (especially compared to my home town of San Francisco) capital city. Yesterday, my wife and brother-in-law engaged in a genealogical quest for their roots here. I’m on my own and find myself surrounded by wonderful, enticing sidewalk cafés and restaurants. Dozens of them, crowded and good-spirited people from all over . . . several languages and the universal expressions of laughter and delight at this fine array of purveyors of food and drink on a beautiful sunny day; a wonderful aroma throughout.
I have a feeding tube and haven’t had a bite to eat or anything to drink, at all, for three years or so. Am I then foreclosed from participating in this movement and resigned to an afternoon of silly commiseration? Certainly not!!!
I have a Tubenmann shirt and access to my tube and a trustee syringe in my jacket pocket and I can score a corner outside table and order a coffee (requesting a pitcher-like container) and join right in. And so can you!
But first, you have to get here. My supply of formula, carried on the plane with the help of a TSA access card, is running low. You can’t order Jevity on Amazon from the States for delivery here, but you can order once here in Europe from Amazon for delivery in E.U. countries. My good friend in Prague tried to order some formula for me shipped directly to Belgrade Law Faculty at the University (where I’m teaching) and to the German Language School in Berlin (where I’m a student). We’ve done this in the past and hoped it would work again.
No such luck in non-E.U. countries such as Croatia and Serbia. Indeed, Abbot Pharmaceutical Products (such as Jevity) can’t even be shipped here at all. I’m out of formula now and resorting to an Ensure like local product called “Nutridrink.” It takes three bottles for a “serving” to equal my normal Jevity input, but I’m concerned (for good reason, it turns out) that I’m not getting enough nutrition and may be getting in trouble.
Anyway – we’re soon off to Belgrade, Serbia where I’m teaching for two weeks and where I’m lucky enough to find a great local doctor at a very sophisticated clinic here. The doctor tells me that overuse of the “Nutridrink” product can cause a serious metabolic imbalance. A few phone calls from the doctor to local suppliers finally score a very similar Jevity product . . . “Nutrison.” The label says, in English among several languages, “for patients requiring enteral nutrition . . . suitable as a sole source of nutrition . . .” It might sound funny, but this is truly music to my ears. I score three boxes of 24 units each over two trips (on the far side of town) to a manufacturer outlet. 500 dinar or about E 100,000 per box – cash. Credit cards (ours, at least) don’t work in this part of town.
The purpose of this little narrative, with a couple of pictures, is to demonstrate two things:
First, with the proper access (and attitude) all you need is a regular syringe to access your feeding tube, to relax, and participate with your friends in cafés and restaurants.
Secondly, and of real importance, don’t run out of formula. I carry a fair amount on the planes and trains with me and try to have some delivered to hotels pending my arrival.
This accommodation was available in the E.U., but not so much elsewhere. And, the “Ensure”-like products which may be locally available probably won’t do the trick and could even be dangerous to me, causing a metabolic imbalance.
This is a problem and I will be getting in touch with various suppliers to research solutions.
In any event, don’t let a feeding tube hold you back. Enjoy and remember: it’s not just the shirt, it’s the attitude.