Following up on my post earlier today, I spoke with my surgeon’s NP about my stoma burning pain, J-Pouch pressure/discharge, and increased JP Drain output. The bottom line is she’s not concerned about any of it. The J-Pouch pressure/discharge is normal. Some folks just have more of it, or a more painful experience dealing with it. She thinks it will continue to improve (as it has) and will eventually resolve itself. She reminded me that I’m only 10 days post-op, which can be easy to forget. She also gave me some pointers for ways I might be able to help get it out while sitting on the toilet (which would obviously be preferable to my couch!). The J-Pouch is an interesting beast. Release occurs with relaxation, not force/pressure—it’s almost the polar opposite from the way “normal” people move their bowels, and it is definitely going to be a bit of learning curve. In some ways, I’m thankful I’m learning now while the J-Pouch as otherwise dormant, as it hopefully means I’ll have less of learning curve following the takedown surgery.
Her best guess as to the stoma burning session is that I am having some leakage around the stoma, resulting in caustic stool on the skin, which causes this sort of burning sensation. I’m not entirely convinced, as I’m pretty confident I’ve had a tight seal around the stoma and, when I changed it yesterday, there was no visible leakage or skin irritation. But she is far more expert than I. She suggested moving the stoma around a bit the next time I change my bag to get a better look beneath and around the stoma. She also wants me to use some stoma powder next time, which should reduce/correct any irritation (even if it doesn’t look like my skin needs it). Finally, she suggested I take some Pepto-Bismol for a day or two, which will reduce the acid in my output. The acid is what causes the burning, so if I see a corresponding reduction in my burning pain, it indicates that my skin is exposed.
Finally, she’s not at all concerned about the increased JP Drain output (“it happens”), but also said that, regardless of output, she’s going to take it out next week, because we don’t want it in there forever.
Nothing earth-shattering and no panacea, but it’s nice to know what I’m experiencing is not uncommon and that we should be able to figure it out (and resolve it).