My Gothic Body: Stone, part 4.1 – Work Life, Bag Life

Part 1part 2part 3.1, Part 3.2

TW: Living with a nephrostomy bag, almost certainly TMI

Sunday, after I got home from the emergency department, I had a couple of packages from Amazon. One contained Amazon Essentials sweat pants, and the other a netted bag, attached to a belt, I could use to hold the nephrostomy bag under the baggy sweats. I was ready to return to work on Monday.

If I was a normal, well-adjusted person I’d probably coordinate with my doctor and my HR people to figure out a reasonable amount of time to be out, perhaps come back working part days, figure out how to use an oddball bank of benefit hours that got grandfathered in when they changed benefit policy a few years ago, etc. But, as many people have have told me plainly over the years – I am not normal, and as a lifetime of insight has demonstrated to my satisfaction, I am not well-adjusted.

I’m afraid of my HR department. They fired one of my colleagues for having cancer. OK. That’s a pretty simplified version but I think that’s a fair summation. (If you want to know what happened I’m appending the story at the bottom of this post.) It is sufficient to say my fear is real.

And, I’m afraid of my doctor. That is, I’m afraid of annoying him to the point he does something mean to me. So I didn’t want to bother him with too many paperwork questions. (I did, though, ask plenty of questions about the procedure, possible alternatives, what to expect, ways to reduce the likelihood of it happening again, etc. I didn’t then want to start asking him to fill out paperwork for my HR department.) Did I mention that I’m not well-adjusted?

It is a novel experience to stand in front of a classroom knowing urine is pouring out of my body into a bag hanging next to my thigh. Knowing that when I’m done I’ll have to empty it because it’s getting pretty full. Wondering if they can see the outline of the bag as I move around the lectern. Maybe they didn’t see it at first but as it swells with urine they notice it! Did I ever think of that? Yes!

My mindset and energy in those early days was good. I could tolerate five weeks of this.

What happened though, is that it was hard to sleep. If this was a permanent condition, or if I were living with it more long-term, I would have purchased a “night bag.” A larger bag to use at night so I didn’t have to get up as often to empty it. I probably should have bought one even though it was only five weeks. I could have used that sleep. OR, I could have adopted this strategy much earlier than I did – remove the bag and cap the tube and don’t worry about emptying the bag. My bladder and kidney were working fine. The bag was there as a measure of precaution.

I chose to sleep kind of sitting up with my bag resting on a low bedside table. It had to be below my kidney and I got kind of squicked out sometimes when I imagined it above my kidney and urine flowing back into my body. Fortunately, I don’t think that ever happened.

Between the awkward position and getting up 3 times a night to empty the bag I quickly started missing sleep time. Sweet, sweet sleep time.

Then there was the nearly persistent discomfort of getting poked by the stent. Sometimes I’d find a satisfactory position but it never lasted long enough. Eventually I’d have to move and there’d be more discomfort.

There was also an ongoing worry about the tube connecting my body to my bag getting caught on something in the bathroom, so I moved (usually) very mindfully and cautiously if the bag and tube were ever exposed.*

to be continued…

*Eventually (perhaps in the next post) I’ll include the heart-dropping moment when I nearly pulled the tube from my back. That was a real eye-opening moment.

I’ll append the story of my colleague’s employment termination at the end of part 4.

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