Stoma Stories, Episode 1a: It Still Burns, But We Know Why

I spoke to my surgeon’s NP again this morning about my stoma pain, and she offered to see me today or Monday (when I was planning to get my JP Drain out). Hoping to save a trip to the city and optimistic that the pain would diminish with Pepto and the stoma powder, I opted to tough it out for the weekend and scheduled for Monday. A few hours later, I was on my way to UCSF. The pain did not get better during the day, and I was barely able to move without aggravating it. If I lay perfectly still, I was fine; if I moved, I hurt. And, unfortunately, I had to move.

After a bumpy and unpleasant hour-long drive, I was back at UCSF. My NP took off my bag, cleaned me up, and poked around the stoma to get a good look. She immediately identified the issue: some of the stitches surrounding my stoma had come out (“It just happens sometimes.”), causing separations on both sides and resulting skin irritation/inflammation (which looked worse than yesterday). There is no risk of the stoma “falling in” my body as a result of the lost stitches. And there was no sign of infection or other problems, and the rest of my wounds look great. Just a lot of pain from a little inflammation. So the good news is we know what the problem is. The bad news is there’s no easy fix—it just has to heal, and that will take time. She applied some no-sting skin barrier spray and a bunch of stoma powder, attached a new bag, and refilled my pain meds. Now I wait.

A few bonuses and one bummer from the day:

Bonus #1: I briefly saw both my surgeon and the chief resident. They knew of my complications, which was reassuring.

Bonus #2: My surgeon authorized the removal of my JP Drain, so it’s gone. In case you are wondering whether it hurts when they remove a drain … yes, yes it does. (To my amazement, there was about a foot of tube inside me. Crazy.)

Bummer #1: We were planning to have a few friends over tonight for a “Colon-Free” party, but had to postpone. Given my pain right now, I would have been confined to sitting as still as possible on my couch, which didn’t sound like much fun for anyone. Maybe next week.

Bonus #3: On our way back from UCSF, we were passing my office on the freeway at the scheduled time for our office band’s concert, and we stopped by just in time to hear my friend sing (for the first time). She’s great, and it was nice to see some friends and forget the discomfort for a bit. You take your wins where you can get them.

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This entry was posted in Complications, Ileostomy, J-Pouch, Recovery, Stoma Stories, Surgery, Ulcerative Colitis, Uncategorized and tagged , , , , , . Bookmark the permalink.

One Response to Stoma Stories, Episode 1a: It Still Burns, But We Know Why

  1. John Casy says:

    Hi Ben
    Thanks for the up date.
    Heal fast
    john

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