My First Feeding Tube

I guess I’ll start off by telling you that my name is Michael Woodbury.  When I was asked to contribute I was more than happy to help out, especially because I dream of being an author someday.  I have Myotonic Muscular Dystrophy type I and have known this since I was 14 years of age.  This is primarily a feeding tube primer based on my experiences of having one since the summer of 2008.

So you’re thinking of getting a feeding tube

Before you get a feeding tube you need to ask yourself why you are getting one.  If you are getting one because you think it will make you cooler, don’t get one.  If you are getting one because you want to know what it’s like, don’t get one.  If you are getting one because you think it would be more enjoyable to put food directly into your stomach, don’t get one.

Doctors can tell you how they will put the feeding tube into you, how it works and all that technical info.  But, unless you’re extremely lucky, I doubt they actually have one in themselves.  I do, I have now had a feeding tube for twelve years plus.  I can tell you the pros and cons and what you may experience while getting used to it.

There is only one reason that I would recommend, and even encourage your decision to get a feeding tube: if eating food through your mouth is hazardous to your health.  I got a feeding tube because I had experienced some choking incidents in the past and my swallowing muscles were decreasing.  There was worry that without a feeding tube I might choke and die.  (I have not died before, but I assume death by suffocation is not an enjoyable experience, there must be a much more pleasant way to die.)

Getting a Feeding Tube Installed

The first step in getting a feeding tube involves going to the hospital.  STOP!  Don’t head out the door yet.  You need to set up an appointment.  Whether you are going for a swallow test or to bypass the swallow test you will want to set up an appointment with the hospital’s nutritionist.  After getting an appointment with them you can go out the door and head to the hospital but only on the appropriate date.  The date the appointment is set for.  Of course, then you have to make sure you will arrive at the appropriate time.  If you get there at the appropriate time and the nutritionist is not ready for you yet, do not throw a fit.  They will get to you as soon as they can.

CHOOSING YOUR FEEDING TUBE

I don’t know if this is regular procedure, but when I first got a feeding tube it was not permanent or even meant to be.  They took a thin tube and put it through my nose and down my throat.  If you are sure you want a feeding tube and the doctor gives you the option to skip this step I would.  It severely decreases your appetite and it hurts your throat for quite a while after it’s removed and it will be removed.  After that they gave me a feeding tube that stuck out from my body about 1-1 ½ inches.  This did not work well for me.  With this option it is much easier to bump your feeding tube against something and it is also a kind of annoying to have another appendage, no matter the length.  Finally I got what is called a G-tube or a Mic-key button.  This feeding tube is set right against your stomach and only sticks out very slightly, if at all.  Overall, this is the one I would recommend, but you may want to talk with your doctor and discuss the pros and cons of the different kinds of feeding tubes.

There are two kinds of tubes that go against your stomach: a balloon tube and a non-balloon (makes sense, right?).  The balloon tube is easier to remove, in my experience, but it doesn’t last as long and I had difficulties where it would come against my stomach, go in further and then, pop, my stomach would resume it’s normal shape.  The balloon didn’t pop, my stomach would pucker and then resume its normal shape. I began to notice that this happened most frequently when I was hungry.

The non-balloon or disk tube last longer, but I’ve had it deteriorate on me twice.  That is not the case with everyone, but when it deteriorates it is harder to remove.  Discuss all the options with your doctor/nutritionist though, you never know if the technology might change or improve.

MY STORY

Above, I explained my reason for getting a feeding tube, but that’s not the whole story.  Your doctor might recommend putting Ensuretm  through the tube, but my mother and I found that was a very easy way to gain weight and my weight became normal, so we realized that we had to do something different so I would, hopefully, not become overweight. Then someone, I think it was my mom, had the realization that it’s always during the summer when I have problems with choking.  The hot summer when it’s much easier to get dehydrated, something I’ve had the (dis)pleasure of experiencing once or twice.   Maybe I would be fine if I used the tube purely for hydration.  This seemed like a great experiment to me, after all, I do like eating food.

We gave it a shot and it worked.  I only use the tube for water, prune juice, and other unpleasant tasting stuff, IF it can be put into liquid form. I have three cups of water morning and night with a scoop of Miralaxtm, both morning and night, and 1/3 cup of prune juice, mornings only.   I’ve noticed that some things don’t get through the tube the best, but half of LIFE is experimentation.  I can take the pills I need to take just fine.  Ever since then I have used my tube purely for hydration. And I always have some form of liquid nearby when eating, just in case.

It’s not the story you usually hear, but everyone has to find what works for them. Plus I’m sure those with ANY form of a disability can talk about different ways they have adjusted their lifestyle so it works for THEM. I hope this paper helps you with your adjustment process.