Tuesday, March 31, 2009

Tube talk

It feels like my G-tube and I just met, but we're coming up on our four-month anniversary already.

My gastric-feeding tube –a foot-long rubber hose that leads to my stomach through an incision in my abdomen– snaked into my life on December 5, after eating through my mouth became impossible and my weight started dropping.

Three times a day I pour a few cans of a high-calorie formula called Isosource down the tube, using a plastic syringe. Aside from liquid formulations of my HIV meds, this stuff is the only thing I eat.

Isosource is not exactly something you would have seen featured on The Galloping Gourmet.

Pay no mind to the Nestlé logo on the Isosource label: Everything about the product is bland: its beige hue, the packaging, its smell and the taste.

Well, to be honest, I'm only guessing about the taste. Isosource goes straight from the can into my belly, so I have no idea what the goop tastes like. And I can't get my friends to describe the taste to me; they refuse to touch the stuff when I offer it to them.

And I won't know how Isosource tastes unless my cancer treatments succeed and I can return to eating through the mouth.

I know that I blog about my G-tube often, but in real life, I'm pretty private about it.

I keep the tube coiled up beneath my shirt in between meals. When feeding time comes around, I grab a few cans of Isosource, a syringe, a bottle of Arrowhead, some paper towels and a newspaper, and feed myself behind a closed door.

In the entire time that I've had the G-tube, I haven't met anyone else who's in the same situation.

Well, that's all about to change.

On Monday night, after Googling the term "G-tube," I stumbled on a website for the Oley Foundation.

Based in Albany, N.Y., the Oley Foundation is an organization dedicated to providing information and support for people dependent upon parenteral nutrition (HPN), where solutions are fed directly into the bloodstream, and folks like me who are dependent on enteral nutrition, where formula goes directly into the stomach via a tube.

The group was named after Clarence "Oley" Oldenburg, a patient of the doctor who founded the group in 1983. Oldenburg has been feeding himself through HPN since 1976.

Nineteen-seventy-six?! Man, that is the year that I graduated from high school! And I've been moaning because I've been on a G-tube since last December.

You can bet that I'm going to be spending a lot of time on the Oley Foundation's website. It's stuffed to the gills with resources for people just like me. I've already created a profile for the patient forum on the site, and can begin to interact with thousands of people across the U.S.

Last night I saw posts on the forum about how to protect yourself against G-tube infections, changing your G-tube regularly, how to assure TSA agents that your G-tube is not some kind of elaborate suicide bomb, and much more.

I'm keeping my fingers crossed that I'll be able to shed my G-tube soon. But in the meantime, or if I learn that my G-tube is here to stay, it's great to know that the Oley Foundation is there.

I'm toasting them with a can of Isosource this morning. Cheers!

No comments:

Post a Comment