Just when I thought matters might be improving, things took a turn and last night was the most difficult night for me since surgery—at least emotionally. The day was pretty good, with my stoma pretty well-behaved. It still burned at times if I turned a certain way or walked too much, but the discomfort genuinely seemed to be improving. By early evening, everything changed. The burning returned, and I started to “feel” stool on the skin surrounding my stoma. Many ostomates report phantom sensations of leakage onto their surrounding skin, so I didn’t want to jump to conclusions and I just sat tight. But it soon became apparent that stool was indeed leaking under the bag wafer onto my skin: I could watch stool release from my stoma, and then immediately feel a corresponding burn on my skin. Not good.
Although the soiled bag was quite difficult to see through, a close examination showed that my stoma appeared to be sitting at or below the wafer ring. Either the stoma had retracted or the wafer had “popped.” The convex wafer is supposed to be angled towards the stoma (\_/), allowing the ring to get as close to the stoma as possible and even slightly lift the stoma up from my skin, minimizing leakage on to the skin. From what I could tell, in my case, the convex wafer had reversed and was angled away from the stoma (/‾\), with the stoma sitting slightly below the rim. If my perception was accurate, this meant stool would have to pool underneath the rim before spilling over into my bag, which would almost certainly guarantee leakage onto my skin. I had to change the bag. Again.
And this is where I lost it. I removed the bag and, sure enough, the entire rim of my stoma was covered in stool. How would I ever heal with the irritated skin covered in shit? The redness from the irritation had increased and spread around the circumference of my stoma. The most painful areas looked as bad (and hurt as bad) as ever. I wasn’t healing; I was getting worse. I jumped in the shower to clean the stoma before applying the new bag. The high-pressure spray from the shower hurt and I had to be careful to avoid direct contact. Despite eating several marshmallows beforehand to stem the flow, my stoma continued to release stool, making the already-unpleasant task of cleaning the surrounding skin a Sisyphean effort. Oh yeah, and there was blood. (Which I’ve been assured is not a cause for concern, but is unsettling nonetheless.) It was all more than I could bear.
How would my skin ever heal? How can I possibly deal with this for another 6+ weeks? I don’t want to do this anymore. This is absolute fucking bullshit. I can’t do this.
I began to sob. Uncontrollably. Naked in the shower. It was a sad display, like something from a movie, and I was strangely detached in my experience of it. Like an out-of-body experience watching it all unfold before me. I got out of the shower, still crying, and laid on my bed as my amazing wife (undoubtedly doing everything in her power to contain her own emotions in order to support me) applied the barrier spray, stoma powders, and a new bag (this one with a moldable convex wafer, which theoretically allows you to shape the opening to precisely match the stoma size/shape to prevent skin exposure). As strong, optimistic, and patient as I have tried to be over the past few weeks, I’d reached my limit, and I simply couldn’t contain it any more. I broke down, completely. And I finally let go of all of my pent-up fear and frustration. Who would’ve thought that the most difficult part of recovery from organ-removal surgery—both physically and emotionally—would be a 5mm-thick band of irritated skin on my stomach?
Here’s hoping the catharsis (and new bag) will prove therapeutic.