Tuesday, February 12, 2013

Feeding Tube Awareness Day Three: Tube Types and Tubie Life

You are in a children's hospital, occupying your bed, when your roommate returns. She looks pale, but is smiling anyway. She pulls the curtain back, excited to have a roomie, someone else to talk to. All seems normal on the surface, except there is a thin yellow tube hanging out of her nose. You are dying to ask what it is, as you've never seen this before -- but you don't want to appear rude...

...you should have asked. She would have told you. It isn't as scary as it looks.

* * *

There are several different types of feeding tubes, that serve for several different functions. The tube described in the story above is a type of naso (passed through the nose) enteric (terminates somewhere in the gut) tube. It was probably an NG (naso-gastric) tube.

Let's take a look at the different types of tubes, and I will briefly describe them from my understanding. I am no medical professional, merely a tubie who has been all around all types of tubes and lines (more on that later...)

Nasoenteral Tubes

nasogastric: This tube is probably the most common tube used for short term feeding (as in weeks or months, as opposed to years). The tube enters through the nose and terminates in the stomach. From there, an adapter fom a feeding bag or a syringe is attatched and the feeding solution ("formula"), water, or meds can be administered. This type of tube can ONLY be used in persons with a functioning stomach -- those with motility disorders (disorders of how materials move throughout the digestive system) should not use any type of tube that terminates in the stomach unless the prescribing physician has a reason that is sensible to the individual patient's treatment. A huge advantage to those who have a functioning stomach is that the opportunity for bolus feeds can be achievable. Bolus feeds refers to a set amount of formula in a relatively short period of time.

nasoduodenal/nasojejunal these are tubes that enter through the nose and surpass the stomach. These tubes are indicated when a person has a motility disorder, or severe enough reflux that a tube that goes beyond the stomach is necessary. The difference between an ND and an NJ tube aren't really significant, other than NJ tubes are better tolerated, and there aren't any surgical ND tube options as of the typing of this blog post. Again, the passage of and use of these tubes are meant to be short term. Long term use (as in, years) can lead to sinus issues, plus they are just REALLY uncomfortable. TUBES THAT TERMINATE PAST THE STOMACH CANNOT BE USED IN A BOLUS METHOD. Using a bolus method past the stomach can lead to severe pain and damage.

...a word about TPN (Total Parenteral Nutrition): this is the form of IV nutrition when a person's GI tract does not work in any functional manner. It can be used short or long term. TPN is administered through a central line (which I have a consult for tomorrow...), which is a long term IV access. This is a risky option, but is a God send for those who need it. I am grateful for it, as it is keeping several friends of mine to a thriving level...as well as knowing I will need it myself eventually due to mito progression as my gut continues to shut down.

Surgical Tubes

When tube feeding is indicated for longer periods (months, years) a surgically placed tube can be considered and is actually more comfortable for the patient.

Gastrostomy/PEG/G Tube  these tubes are placed directly through the abdominal wall. The "G" indicates the tube is a "gastric" tube, or a tube in the stomach. "PEG" is a method of placement (percutaneous endoscopic gastrostomy) and does not actually refer to the tube itself...and yet even doctors and nurses don't understand this concept. But just go with the flow. They will get irritated if you try to correct them. Or they will forget the very second after you remind them (old dogs can't learn new tricks...)

Gastro-Jejunostomy aka G/J Tube  here you are, ladies and gentlemen...a two in one tube! This type of tube is useful if a patient had previously had a G tube and it has been decided to try or move completely to J tube (jenunal) feeds. The beauty of this tube is that it allows for stomach decompression/drainage. This is useful in children and adults who vomit bile frequently (like me...). The process of decompressing the stomach during or after feeds is called "venting". The drawbacks to this tube:

- The jejunal "tail" can flip back into the stomach, which means the tube must be replaced in interventional radiology (IR)

- There are three "ports" (G, J, and balloon to hold the tube in place). A caregiver can easily administer the wrong solution to the wrong port (Carafate should go in the G, formula and other meds in the J, etc). Errors happen more frequently than most people will 'fess up to.

There are more, I am sure. I actually used to have a G/J tube and really had a lot of atypical problems I'm not going to list here, as they may never happen to most people who use G/J's. The last straw? The jejunal "tail" traveled all the way up and out of my esophagus. Dangerous for me. So I kept my G tube for 24/7 venting and got a separate

Jejunostomy or "J" Tube.  there are many methods of placement of J tubes, as well as many types. This procedure is very delicate, and recovery can be quite painful. Some J tubes have internal retention devices, while others don't due to reducing risk of obstruction. My J tube has no internal retention device (no balloon or bumper holding it in). Since I have a connective tissue disorder called Ehlers-Danlos, my J tube routinely falls out...over and over again. I have to use tape to keep it in place, and it is causing skin breakdown as a result. This tube would be appropriate for some, but not for me. (As a matter of fact, tomorrow I have a surgery consult to discuss port placement, as well as converting my "long" tubes into...)

BUTTONS!!!!

"Button" style tubes are low profile, and are accessed via compatible extensions, which are disposable. Button tubes can either have a balloon retention device or bumper style (that won't pop and typically lasts longer). Extensions can lock or not, and leading manufacturers are Kimberly Clark's MIC-KEY, Applied Medical Technology's (AMT's) Mini classic or Mini ONE (available with both types of retention devices) and BARD Medical's Low Profile Gastrostomy Tube (extensions DON'T LOCK. I hated this button. Others love it.)

Now...on to my FAVORITE PART of this post.

How does this type of feeding interact with the outside world?

Here is a lovely description from a fellow tubie friend that I just found so poignant:

"At first I was terrified how others were going to react to me when I got my NJ. Despite my friends and fellow University students knowing I was sick, I was worried that seeing my tube - the physical representation of my illness - would put them off being my friend. However, since getting a tube, it's been a positive experience. Yes, people stare. There will ALWAYS be people who stare. But through tube feedings, I know have energy and can cope with the questions and stares. Tube feedings has given me my life back. I feel more like ME and even though I'd do anything to be healthy, I can't change the illnesses that I have. My tube gave me back my life."

The tubes and/or lines only limit a patient as much as they allow it to. The DISEASE PROCESS is what is limiting. The tubes? The possibilities are ENDLESS. HOWEVER, those with lines may be slightly more limited, but not by much at all.

I know people who work a desk job
I know children who go camping and tumble through jungle gyms
I know women who huff through Pilates classes
I know groups of tubies who come together to improve products
I know parents of tubies who offer their services to provide stuffed animals with button tubes in them to make the process less scary
I know organizations just for people LIKE ME to offer and recieve support and do amazing things

This is Feeding Tube Awareness Week.

My tubes and soon to be my line don't stop me from my desire to encourage and build others up.

Parents of children with tubes don't stop them from reducing stigma, spreading awareness, and making sure their children's experiences through early life are just as wonderful as possible.

A gentleman I know in a housing unit doesn't allow his tube to bring him shame as I listen to his travels as a soldier in Vietnam...he even does so on warm summer evenings without a shirt on, and he doesn't even have an attractive "button" style tube.

You must remember, we have these things because of a disease process. These are not elective surgeries. We are not infallible. We go through some hard times with the "illnesses" we deal with.

But the tube?

That ain't nothing but a thang ;)

Tomorrow's Topic: Meet Nancy Cruzan and Terri Schiavo

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