“So what did you eat during those two years you had those TPN catheters stuck down in your chest?”
“Whatever sounded good and I could keep down.”
“So what sounded good?”
“Nothing.”
When I’m dehydrated, which is a common side effect of short bowel syndrome, water doesn’t even taste good. Ironic, no? Right at a time when your body craves liquids they don’t taste good and you literally need to resort to fun stuff like The Nurse’s Secret (7-Up or Sprite with salt dumped in it) to keep from making another ER run.
*** In the above illustration, it was an either/or regarding where the TPN was infused. It would be in my chest unless I’d developed internal infection, which was about every 6 weeks. Then the Hickman catheter would be yanked, and a PICC line inserted in my arm. You can see the additional happy presence of the fabled Nasogastric tube (nose) and the Gastronomy tube (stomach). I had each. And, no–you don’t want to see the real thing. The drawing’s bad enough. I didn’t want to scare the horses.
Many ask what it’s like to go without food or drink by mouth for so long your body is on the other side of hunger. Even writing about it after so long brings old feelings rushing back like an emotional flashflood.
- I’d been without food for so long my mind and body were ambivalent. I knew I was slowly starving to death but it was data at that point. Fact. My wife and family could bring delicious-smelling meals in and eat without it bothering me. I treasured their company and they needed to eat.
- I saw NG tubes as a necessary evil. I was so used to their discomfort – a NON-hyperbolic term – that it felt odd to not have one sticking out of my nose like a mutant, very skinny elephant. Think Twiggy on a strict diet.
- I felt a literal emptiness from my upper chest down to just below my waist. Whenever the gut has been touched – as in surgery – it deadens and takes its own sweet time waking up. My gut felt like part of me had already died and was cynically waiting for the rest of me to give in to the inevitable.
Yes, in a sense that was true for all but 18 inches of my original 21 feet of small intestine HAD died. That was the reason for this series of abdominal surgeries, the outcome of which forever altered my life.
“So, you could eat and drink by mouth during those two years you had to infuse that gunk every night?”
I could.
“If you don’t mind my asking, what did a typical daily menu look like?”
On August 10, 2001:
Juice (AM meds), 13.25 oz. * milk, 12 oz. * water * soup, 20 oz. * popsicle, 2 oz. * Juice (PM meds), 13.25 oz. * soup, 20 oz. * Juice, 13.25 oz.
“That’s IT?”
That’s a gourmet meal when your stomach is about the size of a walnut.
“No coffee? Seriously? YOU?”
Yeah, I know. I’m striving manfully to make up for that.
“Okay–so what about painkillers and other incidental medications?”
Applesauce. Since 2001, I’ve had to crush prescription painkillers and other tablets and dump them in a couple ounces of applesauce. I’m unable to absorb them any other way.
“But you don’t need painkillers much any more, right?”
Only when passing kidney stones, another side effect of SBS.
“Well, how often does that happen?”
Have I ever mentioned that survivors of life-threatening disease are some of the grittiest, toughest, most engaging and memorable men and women I know? And the ones who stand out to me above all are those who are living with the effects of chronic internal disabilities. They’ve had a brush or five with death, God’s taken a hand in saying, “Not yet,” and there they stand, looking and sounding pretty normal. Well, until you’re fortunate enough to sit and listen to their story. . .
I’m one of them. I don’t wear my disease on the outside; unless you’re my doctor or one of my surgeons, you never know my scars are there. They don’t show. They’re not obvious, so they go unnoticed.
You don’t know that those confounded NG tubes almost destroyed my voice. You don’t know that long years after Medicine vowed I’d be dead I’m amazingly able to exert myself for short periods of time – as if I was a regular guy. A lot of what you’d consider hampering detriments I now take in stride as my daily ‘normal’. You see, this all began back in the Spring of 1997. . .
But my nervous system remembers it all just as if I were going under the knife today. An odor, a color, a sound, anything stressful, certainly the occasional physical trauma–suddenly the neurons begin playing, “Let’s Remember” and I develop strange rashes, itches and vibrations, and my voice gets hoarse.
“You never answered about the kidney stone deal.”
Often enough to remind me I am undeservedly, gloriously alive! I’ve been healed – am still daily being healed – in ways that constantly remind me: this came not from science nor medicine.
This healing is directly from God’s own hand, and in a way that neither my wonderful medical interveners nor my own usually-indomitable spirit can take full credit. They and I did our part and we didn’t have what it took.
This, friend, is a God thing. Today, right here, right now!
There are those who’ll tell you God doesn’t do this today. Well, they come off looking and sounding a little silly when somebody like me walks into the room!
© D. Dean Boone, December 2015