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Bodies: so complicated

I started the day with an unpleasant medical procedure with unpleasant results. Nothing life-threatening, and only life-changing in the long-term sense, part of the fall-out from ensuring the long-term.

The up-side of radiation before surgery is that it decreases the risk of tumor recurrence.

The down-side is that it interferes with healing.

Post-surgery I ended up with a horrid infection and abscess. It’s hard to tell for sure whether the abscess caused the colon join to not heal properly, or the incomplete join caused the abscess, and it doesn’t really matter. The important bits are that there’s a gap in the colon join where the tumor was removed, and the abscess also caused a fistula in my vaginal wall. This isn’t an immediate problem in and of itself, because I have an ileostomy so the colon isn’t being used for anything.

This is “wait and see” kind of stuff. There was a possibility it will heal on its own, even after the radiation, and everything else needs to heal completely before it can be addressed anyway.

But since it’s somehow been almost a year, it was time to take a look. I started the day with a very thorough rectal and vaginal exam (and managed to not ask my surgeon how many people make “and you didn’t even buy me dinner” jokes). The colon join is not closed, and the vaginal fistula is not healed. Instead, they’re connected to each other.

The options are:

1. Completely redo the colon join: take out a new small section and reattach everything, hoping it works this time. It won’t be as serious, because there won’t be a liver component, but this is still substantial surgery. After that heals, if it does, my ostomy would be reversed. The original join is fairly low in the colon, though, which means that a new join would take up pretty much all the available space. Because of that, there’s a substantial chance I may not regain proper bowel function, and the certainty that I will have a long period of incontinence and difficulty. My surgeon thinks that because I’m young and healthy it will probably recover, but she also said that she would re-evaluate a year after surgery and put the ostomy back if it didn’t work.

2. Do nothing. I can keep the ostomy forever. There are no long-term health consequences to leaving a gap in a non-functional colon. The down-side is that there is no way to fix just the vagina. Surgeon says that because of the effects of the radiation on those tissues, there’s effectively a 0% chance of any repairs taking.

Right now I have an ileostomy, which is very high up in the digestive system, which limits nutrient and water absorption and requires frequent emptying. If I go with option 2, she could move it lower down, to a colostomy, which is an easier long-term prospect.

Well.

Right now I’m active and feel good, and can do all the things. I’m working, traveling, enjoying my time. I’m not enthusiastic about the prospect of another fairly major surgery and concomitant recovery period, and really not enthusiastic about the idea of an extended period of being chained to a bathroom while my bowel recovers. Assuming the second surgery even works, of course.

I and Blorp the Ostomy are getting along well. I even spent a week camping with no major issues. (I will blog about Blorp eventually.) I’m basically put together with plastic bags and sticky tape, and it is inconvenient, but not that bad.

Here’s the part where I talk about sex. If you don’t want to read that, time to get off the elevator.

Mkay?

The elephant in the room here is vaginal function: it would be kind of nice to be able to have penetrative sex, and even oral sex is problematic because that fistula leaks. There are alternatives; there are always alternatives, but still. Pelvic radiation also causes sexual issues in women: the vaginal tissues tend to be much less moist and elastic, so it’s possible that penetrative sex would be painful regardless.

I don’t have to make a decision now. Since one of the options is “do nothing” I can take that option for now and make a considered decision in a few months, or even longer. I’ve always known there were consequences to cancer treatment, and that problems with either or both bowel and sexual function were possibilities, but this is still a frustrating development.

4 Comments

  1. Toni says:

    Well, fuck. No words of wisdom, other than I feel for you because this all sucks badly. Am open to a girls night out to bitch and giggle, if needed.

  2. Stacey says:

    Well Shit. or not. or lots of it. But no sex. Gosh darn it Sarah. I’m sorry the news wasn’t better. I would offer up my bartending skills, but we seem to have a geographic impairment. Let me know how I can help. Lots of love and healing thoughts.

  3. Fiadnata says:

    I’m with Stacey on this one. Damnitall!!! Healing time is supposed to be for *healing*, not for just sitting there doing nothing. I’d offer bartending skills, as well, but 1) I’m not much of a drinker (of anything, really — I think I had one hard cider at Pennsic this year, and that’s the place I’m most likely to have anything alcoholic) and 2) you know how long it will be until you see me, so you might as well go for someone who’s at least a little closer. I’ll be happy to provide you with a great place to hang out and talk fiber next summer, though. (As if you need yet another place!) Let me know if there’s anything more I can do. And I’m particularly bummed that everything seems to have healed itself backwards from the way it should have. 🙁

  4. laura goslee says:

    Sending hugs and love as you make decisions. Thank you for the update.