Today was a better day. The skin around my stoma still hurts, and I’m still concerned my output is leaking under my wafer, but it was a better day. I made an appointment to see my surgeon’s NP again tomorrow, which should hopefully shed further light on my difficulties. Equally important, a day on the couch surfing the Internet yielded quite a bit of new info about my ostomy appliance and the problems I’ve been encountering.
Apparently, the wafer “popping” I described yesterday (by which the convexity of the wafer appears to reverse) is by design. It’s colloquially referred to as “turtlenecking” and the idea is that the wafer opening swells up to “hug” the stoma, helping to form a tight seal and prevent leaks (especially for ostomates with mostly liquid output). This is all well and good for folks whose stoma sits high above the skin surface. But for people like me with a stoma that sits only slightly above the skin (as is common for loop ileostomies), and which releases its output at skin level, the “turtlenecking” results in the wafer swelling above the stoma, which can lead to leakage as the output must pool under the wafer before making its way to the bag. Apparently, the Convatec moldable wafer I am using is the best (or worst) for “turtlenecking,” which explains a lot.
Although my stoma is not currently sitting below the swollen wafer, neither is it sitting above it. As a result, my output is definitely collecting under the wafer opening. However, because I use a convex wafer, assuming we managed a tight seal (which I think we did), I am hopeful that the output is not actually leaking onto my skin. I’ve changed the bag so much recently, I am reticent to do so again and, barring some further complications or an obvious leak, I will likely wait until I meet with my nurse tomorrow.
Regardless, given the nature of my stoma (and its tendency to shrink back during the days), I don’t think the moldable wafer is the way to go for me. I requested some additional samples of Convatec’s pre-cut wafers (in a larger size, because the size I was sent home from the hospital with no longer fits due to my ever-evolving stoma), which are supposedly less prone to “turtlenecking.” In addition, after 40 minutes on the phone with Shield Healthcare* (my medical supplies provider), I should receive a replacement order of the correct-size pre-cut wafers and some new bags in the next day or two.
Bottom line: Nothing has changed, but I’m going to try some new things and I know a bit more. And, as they say, knowing is half the battle. It’s never been clear to me what the other half of the battle is—presumably winning. And lasers.
* As an aside, my experience with Shield has been incredibly disappointing and aggravating. In my two interactions with them, the customer service has been absolutely atrocious (at least until, after 30 minutes of deadends and wholly inept CSRs, I finally spoke with a supervisor who seemed to know what she was doing and apologized profusely). For a company that presumably deals with people far sicker and less knowledgeable than I on a daily basis, the lack of knowledge and ability/willingness to help is appalling. The whole company needs an enema (no pun intended).