It’s not all rainbows and butterflies.

The past couple of days haven’t been much fun. After relief for much of the day on July 5, the intense J-Pouch pressure pains returned in the evening, building to the typical mucousy liquid evacuation three more times. Not fun. I also learned a lesson about eating that day. My wife made a delicious cheeseburger and french fries, and I ate way too many of the fries, resulting in sharp stomach pains, bloating and additional pressure. Initially, I was concerned that I was experiencing a blockage, but I had no nausea and my stoma continued to function. (Aside: My ileostomy is functioning great. The gas is much reduced and my stool is much, much firmer. Although firmer stool makes it more difficult to empty the bag, it means I’m losing less water and will be essential when I transition to my J-Pouch.) I went to bed early and felt better in the morning, and I won’t eat as much next time.

Yesterday was more of the same. I felt pretty good during the day, but the pressure pains (and releases) resumed in the evening. My home nurse came to assist with my ileostomy bag change, and all went well (with one exception discussed below). I think my nurse is used to dealing with truly helpless people, and someone who can actually take care of himself is a welcome reprieve for her.

Although the bag change went fine and my stoma (and the skin around it) look great, which is good, I’ve been experiencing a burning pain on the skin around the stoma, which is not. I’ve felt this pain since Day 1, but it seems to be getting worse. At first, I thought it was just related to the surgical wound itself, then—because the pain felt a little like something (e.g., a suction cup) pulling on sensitive skin—I thought it might be related to my bag having too much weight when full or the belt I use to support it being too tight, and now I’m just not sure. My skin burns. It’s worse when I move or twist, but even just laying in bed last night, there was an intense throbbing burn. When it’s bad, it’s easily a 6 or 7 on the pain scale (i.e., right up there with the worst pain I’ve experienced throughout this whole process). And, as with the pressure pains I’ve experienced, the pain meds don’t help.

There’s nothing wrong with the stoma itself, and my bag seal is tight, so I’m pretty sure it has nothing to do with irritation from having stool on the skin. I think it must be some sort of irritation/allergic reaction to the bag flange or the stoma paste I use to secure it. The odd thing is there’s no redness or visible sign of irritation. It just hurts. I will speak to my surgeon’s NP today to get her thoughts. She’s an expert on all things stoma, so I’m hoping she’ll know what’s up. I will also be talking with her about my JP Drain, because after one day of low output (45ml), it increased yesterday (65ml), and is already at 30ml for today. I’m sure she’ll tell me it just means my body has more fluid to get rid of, but it’s worth double-checking, as I’d really like to lose this drain.

More later…

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

3 Responses to It’s not all rainbows and butterflies.

  1. John Casy says:

    Hi Ben
    I’m glad your having this post on your Colitis operation. You have answer many questions I had, BUT one question. When you empty your bag do you really empty it or do you flush it down the toliet and use a new one??
    I hope you recover real fast. Your wife sounds likle a real special; caring lady!

  2. Ben says:

    I empty the bag into the toilet about three times a day. It’s pretty easy (there’s a clip at the bottom you open) and doesn’t take much longer than going to the bathroom would. I replace the whole bag apparatus every 4-5 days. Not only would it be too expensive to replace the entire bag apparatus every time it got full, it would be extremely irritating to the skin surrounding the stoma to be constantly removing and reapplying the bag flange and paste. Hope that helps. (And, yes, my wife is pretty great.)

  3. Pingback: Update: Rainbows and Butterflies | Know Guts

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