For the most part, things have been progressing well, ableit slowly. The infection wound is a blast to pack (note sarcasm here.): The pain is quite intense and different than most pain I've felt when my wife or nurse is packing gauze in my left buttocks. Removing the gauze is not nearly as intense, but still hurts the same. The only saving grace is I get to entertain myself by chuckling "Nothing up my sleeve" while I magically make a foot of one inch cloth appear from my behind. Thankfully, the pain typically goes away after about 1/2 hour and is then just uncomfortable. This isn't true on all days, but most.
I've been thankful to be able to sit for dinner the past few days, if only 15 minutes on my special cushion. Unfortunately, that typically induces a decent amount of pain afterwards and some drainage, so I avoid doing it for other meals or times during the day. Without the drain, though, I can at least lay on my back, which has helped with sleep somewhat. That has been a real challenge over the last few days and drives me to multiple naps during the day (and some morning grumpiness.) Having my son around to pick things off the floor and run little errands for dad has been helpful too: He's always excited to help and I'm always willing to oblige.
One thing that doesn't look like it's progressing well is my stoma: It has shrunk, which is good, but has become flush on the left and bottom. As a result, normal appliances won't fit. I unfortunately waited a few days too long to change it last time and I've started to get some skin erosion around those areas. This is quite painful and can lead to some nasty situations and a vicious cycle of open wounds around fecal matter: Yes, it's as good as it sounds. I've been in contact with multiple ostomy nurses from the major appliance manufacturers who have been fantastic with their assistance and sending out samples to try out. If you have a need for assistance or want to try a different brand, I recommend calling: They are very helpful and also call to check up on how your are progressing.
I'll have to keep an eye on this: If this continues to worsen, there's a good chance I'll have to have it surgically revised to get it to protrude more. It may not be necessary if I can manage with appliances, but if not, then surgery will be next option. I would prefer it to be protruded, as it makes it easier to manage and change appliances. Sometimes too long is bad too, so it's a juggling act of weighing what you have against what you're gonna get. Also, I don't want to continue to throw more pieces of my bowel out the window unless really necessary: Sooner or later, you run out of tube, and that is the least ideal situation.
Oncologist
13 years ago
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