Erik MH:

blog entry

“Eat­ing” through a tube

original date2017-09-22 20:49 utc
republished2024-06-06 00:16 utc
topicstech; health; orig. on PostHope
noteThis post was ori­gin­ally pub­lished at Pos­tHope, where it’s still avail­able, along with sev­er­al pub­lic comments.

So it occurred to me that perhaps some of you know as little about tube-feeding as I did a few weeks ago, and that you might be curious.

Medical IV pole bearing a “Kangaroo” pouch of “food,” and a pump
You can see from the photo that I’m rel­at­ively port­able even when connected.

I’m eating a little solid food now — more than I was last month, in fact, because they widened my esophagus a bit during surgery in August, and perhaps also because the radiation is ensmallenating the tumor, too.

But most of my calories are coming through a jejunal tube, a feeding tube that connects to the jejunum — a bit of the small intestine below the stomach. (They chose this type of tube instead of a gastric tube because they didn’t want to poke a hole in my stomach that would still be being used when they’ll use most of my stomach to replace my esophagus in November. Makes sense.)

Since the jejunum comes after the stomach, one can’t just shovel food into it and expect the system to cope; rather, a basically liquid “food” gets pumped in at a constant but selectable rate of (for me) between 50 ml and 100 ml per hour, which seems to be the fastest I can tolerate comfortably. The operative figure for me is calories, and each 1 ml of the feed formula I’m ingesting contains 1.5 calories. Some quick math will show you that I need a good 32℥ (hey, if we’re going to use a medieval measure like “ounce,” we should use its actual symbol, right?) of feed each day just to get 1,500 calories — which would take 13 hours at 75 ml/hour.

Fortunately, it’s not quite that bad. I’ve become somewhat adjusted to feeding at night, and so I get half of my calories then: two 8℥ bottles over eight hours at about 55 ml/hour — and I’m half done. So for another 2⅓ hours in the morning and 2⅓ more hours in the afternoon at a rate of 90 – 100 ml/hour, and I’m all done — with several hours off each day.

As with so many things with this cancer, I’m so grateful to be living now and not even 20 or 50 years ago! Before the j-tube was put in, I’d lost five pounds per week for five weeks — and that really would’ve continued until I’d probably have died of starvation, not of cancer. Instead, I’ve put several pounds back on and have completely stabilized.

So I sometimes swear at the j-tube, because it’s a pain. But I’m really grateful for it!