The never-ending battle between me and stoma (and the irritated skin surrounding it) led back to UCSF today for an appointment with my surgeon’s nurse. I showed her my “turtlenecked” wafer and resulting semi-recessed stoma and asked “Is that what it’s supposed to look like?” To which she responded, “Well, I’ve never seen one look quite like that. So, no.” When we removed the old appliance, the skin around my stoma was—wait for it—irritated and inflamed (shocker!). The inflammation had spread and now encompasses the full circumference of my stoma in a ~7-8mm-thick band of irritation. The nurse’s response: “I could see why that would hurt.” Removing the appliance also revealed that there was some output leakage underneath the “turtlenecked” wafer (as I expected), though it fortunately wasn’t too severe. She is not a fan of the moldable or cut-to-fit wafers for loop ileostomies for precisely this reason. They are simply not rigid enough to maintain a good seal around a low-sitting loop ileostomy that is constantly fighting to pull back inside the body (where it belongs). She wants me to use Convatec pre-cut wafers, which are what I used in the hospital and during my first couple bag changes, and are my favorite of the half-dozen different varieties I’ve now tried.
We next cleaned the stoma and surrounding skin. Fortunately, eating three marshmallows about 10 minutes beforehand stopped the output quite well, making this fairly easy (if painful do to the necessity of having to poke, rub, and prod the irritated skin). I laid down in a semi-upright position on the exam table, and she had me pull the skin above my stoma taut, which causes the stoma to sit up from the skin a bit. She then took some measurements and determined that I should use a 7/8″ flange with some minor modification. (As you may recall, this is the size the hospital sent me home with, bit that my home nurse determined was “too small.” Home nurse overruled.) I agreed with her assessment (and had come to pretty much the same conclusion myself), recognizing that, first and foremost, we want the tightest fit possible. I’d rather have something a little too tight than something that opens my skin up to further damages.
She then showed me a trick where she rolled back the edges of the wafer opening a bit creating a very small ridge that allows the wafer to sit a little higher and helps hold the stoma away from the skin. She then expanded the wafer opening a bit and shaped it to fit my oval-shaped stoma (although the pre-cut wafers are not moldable, they have enough flexibility to allow for minor modification without compromising their integrity). After getting it the right size and shape, we shaved my surrounding skin, and completed the standard routine of no-sting barrier spray and stoma powder (3 times). She then applied the 7/8″ appliance while I held the skin above my stomach taut and she held the stoma itself “up” a bit. The end result is a tight-fitting appliance (with a wafer that shouldn’t “turtleneck” or change shape and a stoma sitting much higher than in my most recent bag applications. No telling whether it will hold up and stay that way, but I’m feeling cautiously optimistic that this application (if it holds) may finally allow my skin to heal. Fingers crossed.