Living With A G-Tube, 9 Months On, aka Fuck Cancer

It’s now been 9 months since I was last able to swallow everything normally. While I initially balked at the thought of a g-tube when it was presented to me before my surgery last August, I reluctantly agreed “just in case.” (Actually, my surgeon said, “This is going to happen.”)

I’m glad it was done. My swallowing hasn’t been ideal for years from late-stage complications of the scar tissue (something no one ever warns you about) stemming from the radiation treatments for my other cancer back in 2004. I was occasionally aspirating, but also managing it well enough that during all that time I had only one incident of pneumonia that required a hospital stay. I’ve had two in the last 2 months, both times stemming from occasions when I actually did try to eat and swallow. I think I’ve learned my lesson.

My swallow therapist has been wonderful, but after deciding to give it one more try after an agreed-upon break for a few months, I think I’m ready to throw in the towel. Considering that last week some of a single bite of food that I chewed (to get the direct taste) and spit out, still managed to find its way down my windpipe—and this tells me it’s time to give up trying. The situation isn’t improving, isn’t ideal, but as Ben says, “It is what it is.”

I have learned several things over the past few months in the event that—the gods forbid—any of you find yourself in a similar situation. I’ll probably be adding to this list during the day as things come to me, but at least I can pass on my initial tips and tricks.

One thing no one really prepares you for is the utter lifestyle change that tube feeding brings. You don’t realize how much eating is part of the social fabric of our society, and being tied to a g-tube negates all that socializing (unless you’re willing and happy to just sit at a table and watch everyone else eat and drink; I am not). Weekend lunches out together and nightly dinners were a source of joy and one of the few times that Ben and I could just sit together and unwind from the day, sharing thoughts, experiences, and frustrations. Ben can still cook for us both (something he loves to do), but mine needs to be pureed so it will go through the tube. We still eat at the same time, but since the g-tube can be messy with “real” food, it’s best done standing at the kitchen counter while Ben sits at the dining room table. Not exactly conducive to sharing. We still occasionally go out to eat, but I always get my meal to go so I can take it home and puree the fuck out of it (see below).

Now, some tips, in no particular order:

• • If you’re stuck with the tube for more than a short period, get a Ninja. It will allow you to reintroduce “real” food to your diet unless you’re happy with the same Nestle Isosource formula day in and day out.
  • I supplement the prescribed formula with Premier Protein and Boost High Calorie energy shakes.
  • Soups are good for enteral feeding and a good gateway back into “real” food. They’ll still need to be pureed but the first time that tomato bisque hit my stomach it was a little slice of heaven.
  • That got me thinking. If I can do soups, why not other food? Over the past nine months I’ve learned that pretty much anything can be pureed for tube feeding. I’ve done everything from fish ‘n chips to cheeseburgers and fries to steak ‘n shrimp to chicken Caesar salad. The key is to making this work is to use enough water to thin down the mixture to a consistency where it will easily go through the tube—often dramatically increasing the volume you’ll ask your stomach to hold. (Try to push pizza through a 3mm hole and you get the idea.) I’ve learned that starchy foods (potatoes, bread, pasta, rice)—no matter the consistency—can still be problematic and will destroy your syringe after one meal.
  • Flush, flush, flush. Cleanliness is next to godliness as they say. After you inject, always follow with at least one syringe of clear water to clear everything out of the tube and prevent any blockages at the connection to the mic-key. There’s apparently a valve inside there that prevents stomach contents from coming out when the tube is disconnected that needs to remain clean to function correctly.
  • There are many brands of enteral syringes available, so if you can, get the ones that can be cleaned and reused multiple times. Unfortunately, the company that supplies mine only carries the Vesco brand, which are cheap and good for maybe two or three uses (even with thorough cleaning) before they become unusable. When I was in the hospital I noticed they use the Monoject brand that keeps going, and going, and going, but unfortunately, my supplier doesn’t carry them nor can they be purchased through Amazon (unlike the Vesco brand).
  • Verify that all your medications are crushable. If they aren’t, ask your doctor for crushable or liquid versions. I haven’t had to deal with requesting crushable prescription meds since everything I’m on can be crushed, but OTC items required a bit of sleuthing. Most OTC meds are available in various formats. If they aren’t carried at your local pharmacy, Amazon comes to the rescue again.
  • Along those lines, after struggling for days after coming home from my initial surgery in August with a manual, plastic twisty-type pill crusher, I said, “Fuck it. There’s got to be a better way.” That’s when I discovered an electric pill crusher that makes short order of pulverizing my meds.  It’s just a repurposed coffee grinder, and frankly if you’d rather use one of those it would work just as well. (If my pill crusher ever gives out I’ll just get the coffee grinder; they’re about the same cost and the coffee grinder is better looking.)
  • Hydrate, hydrate, hydrate. One thing that’s often overlooked is keeping properly hydrated. To this day I still struggle because it’s just not something I think about, and I don’t get thirsty (or hungry, for that matter) the way I used to. My morning routine consists of 16 oz. of filtered tap water followed by another 12 oz. or so of iced vanilla latte. (You didn’t seriously think I’d give up coffee, did you?!) I follow that up throughout the day with another 16 oz. of water every few hours.
  • Developing reflux, or GERD is a definite possibility if you’re on tube feeding for an extended period. I’ve had issues with reflux since the late 90s (I’ve been on Prilosec for years) so this isn’t new for me, but it’s gotten worse since I’ve had the tube and it seems to be volume-related. I’m now acutely aware now of how much liquid goes in my stomach, and since it’s shrunk since I’ve been on this liquid diet, I can’t stuff myself the way I used to prior to my surgery or it will back up—which is not a pleasant sensation when you can’t swallow anything to flush it back down.

Now, about that taste thing. Theoretically you shouldn’t be able to taste anything that goes directly into your stomach via a g-tube, but I’ve found (and this has been corroborated by my nutritionist who’s heard the same from other patients) that oftentimes you do get a hint of taste from things. See: coffee (thank the gods).

I guess that’s about it for now. If I can think of anything else to pass on, I’ll add it.

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