Stoma Stories, Episode 1: It Burns

My stoma hurts. More specifically, the skin around my stoma burns. This is not normal. When I spoke to my surgeon’s NP yesterday, she advised me that the burning was likely due to some leakage behind the bag wafer (which surrounds the stoma and adheres to the skin), resulting in acidic stool touching (and burning) the skin. But I had changed the bag the previous day (with the help of my home nurse), and we saw no sign of leakage or skin irritation. Nonetheless, my NP was confident in her diagnosis and suggested that I push the stoma around a bit to examine the skin underneath and directly adjacent to it. Poke around in my small intestine, which is sticking outside of my body through a hole in my stomach? Is this real life?

Not wanting to remove my newly applied bag too soon (frequent bag changes can also cause irritation due to the adhesive and the pulling on the skin during removal), I decided I would wait it out a day or two to see if the pain got better. I lasted about 3 hours. The burning became so intense that any slight movement sent intense pain shooting all over my body. Getting up from the couch was cruel and unusual punishment. I cried for the first time in a long time. So I decided to change my bag and try to figure out what was going on.

I waited until my stoma was quiet (or mostly quiet), gently removed the old bag/wafer (ouch!), and jumped in the shower to let the stoma breathe a bit and to assist with cleaning the area. I shaved the surrounding skin, getting as close to the stoma as I comfortably could. Although it’s necessary to shave the surrounding skin regardless to ensure the bag adheres to the skin properly, I was also holding out hope that some of the pain was due to hair being pulled by the adhesive. Thanks for playing, but nope. 
In the process of shaving, I nicked one of scars, causing a bit of bleeding and freaking out.

Per my NP’s advice, I next proceeded to stretch the skin directly adjacent to my stoma and move the stoma around to get a better look. If it wasn’t obvious from the very definition of what it is, the stoma is a weird beast. It’s my intestine. On the outside of my body. With a couple of holes in it—one which feeds to the bag, and one which leads to my J-Pouch (but is not yet fully plumbed). There are no nerves in the intestines, so you can’t feel anything. It’s pretty weird to watch yourself touching or poking a part of your body, but to not feel the touch. The surrounding skin definitely has feeling, and all of this poking around confirmed that my burning pain was emanating from the skin directly adjacent to (and to the right of) my stoma.

Upon closer examination, I confirmed that the very edge (1/16″) of the skin surrounding the stoma appears to be slightly inflamed (it looks like a thin red ring around the stoma). My NP was right. But if this is the source of my pain, it’s amazing—and, quite frankly, bullshit—that so much pain can come from such a tiny area of what appears to be mild inflammation. I feel like my skin is soaked in acid and being slowly pulled off strip-by-strip, and all I have to show for it is a pencil-thin red line? Bullshit.

Having identified the apparent source of the problem, I allowed everything to dry completely, and then liberally applied stoma powder to the affected area. After letting it sit for a bit, we blew off the excess powder and installed a new bag. I am cautiously optimistic that this will solve the problems I’ve been experiencing. If everything’s working right, there should not be pain associated with my ileostomy. Unfortunately, I have no idea how long the stoma powder will take to act (but I have a call in to my NP to find out). It’s been 12 hours, and the pain is as bad as ever.  7½ more weeks…

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

4 Responses to Stoma Stories, Episode 1: It Burns

  1. John Casy says:

    Hi Ben
    Perhaps you need to see your surgeond in person and let her see whats wrong. Nurses are ok but not as good as a DR. No fun being in pain.
    Good luck and heal fast.

  2. Jamie says:

    Get some thick moisture barrier paste

  3. Andria says:

    I’ve been having the same issue with the burning, and I have the red ring around a portion of my stoma, I’ve done the powder that didn’t seem to work, I’m frustrated and just want it to end, did you find any relief? If so what?

    • Ben says:

      I’ve tried everything at least once over the years. The keys for me seem to be: (1) a right-sized appliance with a convex wafer; (2) getting the skin really clean and then really dry during each appliance change (I use a handheld shower nozzle, no soap, and a hair dryer); (3) stoma powder and barrier spray sandwich (dry, apply powder, spray, dry, apply powder, spray, dry again); and if leaking is an issue (4) I’ve had some good luck with stoma paste and barrier rings (in addition to a right-sized appliance). A few other last resort options if the skin just won’t heal: Marathon Liquid Skin Protectant and debriding agent (prescription).

      I also recommend seeing an ostomy/wound nurse. If nothing else, they can get you new product samples.

      But unfortunately there’s no silver bullet. Just patience.

      Good luck!

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