Thursday, December 12, 2013

Button v. Long Tube For Dysmotility

This is a topic I personally have circled more than once, and it is also a challenge for many who use tube around the clock: should I use the button tube (MIC-KEY or AMT buttons) which lay flush with the skin without an extension put in or the long tube that some have a hard time concealing...plugged in all the time or not.

There are legitimate arguments for either side. I wanted to take the time to explain my own circumstance, experiences, and opinion. The operative word being opinion. I have been tube fed since I was 19, and now at the age of 26 do believe I have been through enough experiences with both that could help a caretaker or consumer an informed choice with a fair balance between the positives and the negatives.

Shall we begin?

Button Style Tubes


The buttons now are by far the preferred tube by parents, children, and adults. I mean, look at it. That's pretty harmless looking when one thinks of implanted medical devices, right? Add in that little tubie pad and I daresay it's pretty stylish...when not in use.

In order to use the button, you must have either an extension set


Or a luer slip syringe to access it. Otherwise...it's just a cute little piece of equipment. Cute is not conducive to function. I don't know about many others, but I forget extension sets all the time an usually use a syringe I can just dunk in the ports which is very, very frustrating.

Buttons have some cool qualities to them. I love to see pictures of kids and adults alike enjoying nice weather in a pool or better yet a salt water ocean (very soothing to the entry way of the tube, called a stoma) and the button is somewhat of a fashion statement. It yells "I may have some limitations, but I can still live a great life despite it!". And many do! I think it's great. 

Buttons are practical for those who do not use their tube all day every day. This is not just because it is very easy to conceal and less likely to catch on things, but also because the extension sets get pretty gross when not washed and dried properly. If they are in use ALL the time they wear out...and depending on your insurance, that may hurt the wallet a bit if you are in need of more than what is allowed by your individual plan.

There are many brands of buttons, and not all of the extensions are compatible with others. If you or a loved one is placed in a hospital, and there is not extensions even there and the tube needs to be accessed...that's a bit of a quandary. Never underestimate the resourcefulness of nurses, but sometimes it may end up with extra IV lines and unnecessary medical intervention that could have been averted. No one ever plans an emergency, and I have been caught in that situation many times...usually ends in my getting nutrition via IV which isn't optimal at all.

Then there is a technique called "venting", and I have to do this pretty regularly. "Venting" is letting trapped air escape the stomach because for some reason most with motility issues have this problem. In my experience buttons work just as well as long tubes for releasing air...

But not for bad motility days, where it is far preferable to actually drain the stomach of contents instead of vomiting. Poor motility makes a person feel as if they have an awful case of stomach flu...often. At one point when I had two tubes I felt this all the time. I still have these days, the I hate to say, but the button doesn't do the trick as well as a long tube.

Button Tubes are wonderful for intermittent feeding, for a schedule that doesn't require constant access, and also is aesthetically pleasing. However, they are not always practical, and at times practicality means more than something you can show someone just to make them laugh or even start a more casual conversation. I have loved buttons for may reasons including that they are less likely to get caught on items. As with anything, both sides of the story are important in making a decision, so here is another look at the seemingly less popular long tube

Long G Tube


This was taken just before I started writing this post. As you can see, I have switched back to a long tube. 

Now, why would I want to do this? I am young, if not taped well it does stick out quite a bit, and it isn't at all attractive.

I take care of most of my own home medical needs on my own. I am connected to my G tube all day, every day (I was on another food trial that was stopped again. Denial isn't just a river in Egypt...). I am bound in a wheelchair and am incontinent as well. That keeps me busy between the bits of normalcy I get to enjoy as well! I have found the buttons to be more temperamental and high maintenance. These are not bad things in and of themselves...but the extension sets wear out due to the fact I do feed, vent, and drain from this as needed (they take some equal turns at times.

These last for a long time. My insurance covers a new one every three months, and since they aren't in such high demand I can get them for fairly cheap if I need a new one due to a balloon popping (which doesn't happen too often).

A LOT of people who have to deal with enteral feedings (most do not like it...there are some kookie people that seem to enjoy having friends in their body but I don't know too many) feel disfigured by the tube. I struggled with this as well for quite a bit as well.

As my care has evolved we do not feed into the small intestine due to spacisity, pain involved, and all of the side effectts that I experience. I use a G tube to feed at a slow drip of a specialized formula for GI compromised patients. Over the years I have grown to learn to not hate myself for needing this, and not feeling ashamed. I like the long tube because the disk can slide higher or lower depending on bloat, which is common for digestive distress. Buttons do not give this option, so it does add to pain issues if you are prone to feeling distended and sick at times.

These can be easier to catch on door knobs and other items that stick out all over the place. I tape mine down not so much it kinks the tube (these are MUCH more flexible than button extensions), but in a way that it is non obtrusive.
Draining from this on bad days is a no brainer. Hook it to drain, lay down, and just relax. It can be overwhelming to feel sea sick and you don't even get to ride in a boat to feel that way!

These are more practicle in my opinion. 

There is a fair argument to this...and that is in clamping the tube for medications. Extensions for buttons have clamps which is so helpful. However, there are ways to get around this.

The Y site connector made by Kangaroo. Purple tips, I didn't upload the picture properly so I cannot show you. But these do have clamps that when you need to, you can unplug from the feeding bag to te extension. Has two ports like extensions do and work just as well.

Long Tubes are easier for self care, busier schedules, and around the clock access if one is comfortable with it. Active children tend to be able to move more freely with buttons, but by trial and error, if draining is needed due to illness, these are going to give the best result.

Any further questions feel free to email me <3






2 comments:

  1. Excellent post my friend...I have struggled with medical device hatred and even feeling shamed by my family for having to have it. We tried a button years ago and it just wasn't a good fit with my feeding needs. I will say that having a toddler does add a little bit of stress with the long tubes because, though he knows he isn't suppose to touch mommy's tubie when he is angry he sometimes tries. I love the way you spread awareness about this stuff because we shouldn't be ashamed for having to have tubes or IV lines. We are still just people like everyone else.

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    1. I really tried to like having a button. For the G/J, it seemed a better fit...sort of. Problem is that my stoma for the G tube is so high in the fundus (stupid...stupid move Dr. R from radiology...) that it was to make sure the Nissen wouldn't be needed. It will not aspirate content, just flow the overflow to gravity. Ergo, long G/J was a bust for feeding and draining concurrently. All have different needs, so different strokes, right? ;) The cool thing is that now in pseudo-obstructive episodes I don't need to worry about buried bumper, and I don't have to worry about being chastised for have a 1.0cm stem length (they put those in infants) again UNLESS OF COURSE I can ever move to supplemental feedings only.

      One can hope, aye?

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