The Plan

I met with my surgeon (and nurse) yesterday to evaluate my current status (and pending return to work) and come up with a plan going forward. Not surprisingly, she was not thrilled with how the wound around my stoma looks and that it remains so far from being healed. The skin in the wound is no longer pinkish and has taken a whitish fibrous look, which they think is likely dead skin and may be preventing the wound from closing (though it was difficult to tell whether some of this was also leftover stoma powder/paste). To deal with this problem, we returned to the calcium alginate dressing and Eakin seal (or stoma paste), and she prescribed an enzymatic debriding agent (which has not yet arrived at my pharmacy). The debriding agent should take care of the dead tissue, allowing new, healthy skin skin to fill the gap. I’ll give it a shot as soon as it arrives and hope for the best. For now, the wound remains open, sensitive, and painful. But such is life, I suppose.

As for the overall plan, Step 1 is to do absolutely nothing for another month to give everything some additional time to heal. Then, sometime next month, I will have another CT Scan with—in my surgeon’s words—”lots of rectal contrast”. Lovely. Unless the scan conclusively answers the question “what went wrong last time?” (doubtful), we will then do a pouchoscopy (i.e., a colonoscopy for people without a colon). The pouchoscopy will be done by a GI, not my surgeon, and I’ll probably have it done by the chief of gastroenterology at UCSF and, depending on the results, may have my GI at Stanford take a second look. What to do after the pouchoscopy (e.g., more scans, an exam under anesthesia) really depends on what the pouchoscopy shows or doesn’t show. But my surgeon made clear that we’re not moving forward with a takedown until we are certain (or as certain as one can be) that I won’t run into the same issues. One midnight surgery is enough, thank you very much. As a final step, we may opt to cut me open at the time of the takedown so my surgeon can take a final look at the J-Pouch before dropping the ileostomy. This would obviously make the takedown a much more invasive procedure, but it also provides some additional peace of mind and could prevent a repeat of the complications I suffered last time. We don’t need to decide today and hopefully the other less-invasive tests will yield some answers.

So for now, I wait. And then they stick some things up my butt and take some pictures. And then we decide what to do next. The soonest we’ll be discussing a takedown is this Spring. If we can work out this wound issue soonish (which I think we will), I’m OK with that.

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

3 Responses to The Plan

  1. Adam says:

    Hey Ben,

    Good luck with the scan and pouchoscopy coming up!
    hey, I wanted to know, are you in any type of pain at all, and if so, is it severe at all or pretty mild? I hope you’re obviously not, but I wonder if its common to be in any pain when the wounds are healing up?
    Adam

    • Ben says:

      Thanks, Adam. Yes, there’s definitely pain associated with the wound healing. Right now, it’s essentially an open wound with raw, sensitive skin. The pain is two-fold: (1) a steady dull/throbbing pain; and (2) sharp stinging pain anytime the wound is touched or rubbed or twisted or pulled. Unfortunately, because of its location (under my appliance wafer), it’s getting touched, rubbed, twisted, and pulled a lot, so there’s a fair amount of discomfort most of the time. Worse, pain meds, including narcotic painkillers, don’t help much because the pain is so localized and superficial. It’s just a waiting game.

  2. Justin L. says:

    Good luck Ben!

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