PEG Tube 101

My wife is a Wound/Ostomy/Continence Nurse (WOCN), commonly referred to in my part of the country for whatever reason as an ET nurse. My doctors knew her well preceding my introduction to them, and took her advice regarding my wound care, and expected her to continue that care when I came home.

Me, I had a PEG tube for four years. I know a little about them and would like to share that with any who is new to the tube.

1. Someone asked in a recent thread how you can continue to lose weight while on the tube. I can offer a few reasons why this may happen. The first is that we are programmed to eat three times a day, for the most part, and so do not expect to have to fill ourselves with protein four, five, maybe even six times a day. And so we don't.

The second possible reason is that there are a number of possible protein 'doses', if you will. I, for example, started out with a 1200 calorie can (two cans each 'feeding', four times daily). This proved not to be enough, so they jacked me up to 2000 calories, and then down to 1,500, which seemed to work out nicely. (My nutritionist advised that the 2000 cal can did not have the sufficient additional nutrients that the 1200 and 1500 cal cans did).

The third potential reason is that we can feel full doing the deed three times a day, for example, especially if we are also working on eating orally, and thus, again, we skip one or more of our important 'meals' on a daily basis.

2. From my reading here, there are clearly a number of different types of tubes. Mine went into my stomach, had a plastic disk at point of entry that I called a bumper, and had some toggle switches at the point of protein entry, so that I could shut it off or shuttle off the liquid into the sink, for example, if the need arose. I mention the bumper because, when my bumper was not in place (after an emergency replacement for example) my stomach would suck the tube in, to the point that it would become very painful.

3. My tube was contained by a bubble, really. When they punched their hole in my stomach, when they inserted the tube, there was an empty balloon on the end inside of the stomach. A secondary 'port' on the tube allowed them to enter saline or whatever into the balloon, filling it up so that it could not come BACK through the hole they had carefully crafted. Maybe they have better designs now. In my case, the balloon would deflate at about 12-14 months, and come out, always a surprise, especially waking in the morning and discovering that something about you was not quite the way it was the night before and that your dog was chewing on a long white tube (okay I made that up, but it could happen).

4. If your tube falls out and you need a new one, you need to go to the ER immediately, so that the stomach hole doesn't fill in, close, whatever they call it. You do not any new surgery if they can use the same perforation, and that means that you need to get there pretty quickly. I am not saying you need to break the speed limit (although it's probably a good excuse if you get pulled over), but just that you should not wait until after the weekend golf tournament.

5. ER tubes suck. As a rule. Ok, in my case, they all did. Those are the ones that my stomach swallowed causing um, some pain. You want to schedule an appointment, a surgical session, with your ENT or Gastro person at your earliest possible convenience. If the hole is still there, it is a painless if unnecessarily long procedure, and you can even watch it on the overhead ultrasound machine, if you are into that.

6. Saving the best for last, this one and the next one, that is, the place where they put a hole in your skin and into your stomach, that is called a wound. As such it requires wound care, just as the first raspberry you received falling off a bike did, just as do those wounds you acquired in that recent knife fight with a surgeon while you were sleeping. I am not a doctor, and don't even play one on TV. In my experience, though, I had a number of ointments and balms applied to the immediate area, from diaper rash ointment to anti-fungal creams, to protective skin creams (whatever that means), to any number of others you are probably familiar with. Always, of course, ask your docs before applying anything. This I would cover with a particular sort of non-stick gauze and press the bumper against it, and I never really had problems with wound issues.

7. I was instructed while in the hospital exactly how to administer my protein liquid. I had something that looked like a hypodermic needle on steroids (plastic) that I stuck into the top of my tube. I had two flasks, into each of which I was to pour a can of the life-preserving protein. I was then to pour carefully from a flask into the needle-****-funnel, and then use a plunger to push it down into my body. Friends and neighbors, this is ridiculous. Once I got home my wife showed me a better way immediately: pour the protein into each of the flasks, then fill the remainder of each flask with water, and simply let this thin-downed substance gravitate through the tube and into the body, with no need for the plunger. It works, trust me. No need to cram the plunger in, no need to pull it out with that ubiquitous POP following it: the thinned protein source will find its way on its own AND you are getting some extra hydration to boot.

8. Occasionally, of course, you do need to use the plunger to help clean out the tube, and others have described ways they've used to help with that (carbonated drinks come to mind immediately). For cleaning I would simply fill a flask with warm water, fill the funnel and use the plunger until all was gone and the tube was clean. Just one way, maybe not the best.

9. Can't believe I almost forgot this one: If you are nauseaus and on the tube, and if you hurry, you can avoiding puking (which is really rather uncomfortable, after all), and simply switch the toggle switch so that whatever is coming is coming out through the alternative opening and into, say, the sink, avoiding that nasty wretching and cleanup. Almost makes you love your tube.

Class dismissed

Take care, folks,

Joe