Dear Ostofriends, I just had my revision of the stoma revision, the one I was whining about for the last couple of months, the "cherry in the bottom of a funnel" stoma that was turning out to be unpouchable no matter how hard I tried and you all tried to give me out-of-the-box ideas to jimmyrig a wafer that worked.
I'm kinda freaked out by the result.
Good news is that the surgeon did pull more colon out through the muscle, left the stoma in the same sweet place.
I've never seen a stoma this unsightly though. The topic title says "behold.." but I'm not going to post a picture, it's going to break my phone camera and maybe the entire internet if I post it. Gnarly, scabby, oozy, bumpy, red/black/pink/gray, just gruesome.
Ok, it's only been since yesterday (surgery day). More good things: the first revision pinched and pulled with every move, this one doesn't. And I don't have to dig into my belly to find it, it's right there and will be pouchable. Right now it's bleeding and oozing, the stoma and the skin around it (which got totally fried over the last months because I could never keep poop off it), and that hurts.
There was also a dramatic scene: yesterday, a few hours after surgery (I was awake and feeling quite good) when i looked down at my bag and see it's completely full... of blood! Seriously, a dangerously full load in ostomy bag terms, all fresh blood, and I didn't even feel it come out. My friend and I freaked out. Nurses were called, their jaws dropped, residents were paged and ran to the scene. I'm being a little over dramatic, no one ran but they did come quickly. Turns out the blood came from the stoma seam on the low side, the 6 o'clock position. Nervous resident gets something to empty the blood into and can't get the bag drain opening open; we do it together; blood and a huge clot comes out. Resident gets the silver nitrate sticks and starts cauterizing like mad, saying "we need another stitch" but that didn't happen because she uses a bajillion silver nitrate sticks. Bleeding finally stops, everyone is worn out, slap a new wafer on and clean up all the red. A CBC is ordered and I give more blood for that.
Explanations given is that the outside of the colon is very "fryable" (I think that's the word they used) tissue, easy bleed. But: if that much came out at once, clotted, how can they know there wasn't more building. No answer was given.
Time goes on, I fart a lot and a lot of angry post-bowel-prep juice comes out, mixing with the blood that's coming from the seams of the stoma and the broken down skin (not dramatic amounts, just to say it's what's the norm of now). I ask when the surgeon will do rounds because I have questions. "Tomorrow" Ok. Tomorrow came and a couple of his residents show up. No concrete answers on this. The surgeon will "probably" come later, he never comes early. He didn't. I asked the nurse, when does Dr. K come today? "Oh, he's a surgeon, he usually doesn't come." Great. "Are you ready to be discharged?" Yep, I need to get home to my computer to be able to google stuff. "Ok, we'll just wait for the WOCN to come and take a look at the stoma rim to get the 411 if it's good to go." Fine.
WOCN came, a dude, did not impress me with his ostomy knowledge at all. He put my baggage on weird, got powder and barriers ready but forgot to use them, kept on talking over me when I was sharing pertinent information about this sitch, wasn't helpful in new product selection, and when I asked him (for the 3rd time) how my stoma rim is after the blood explosion, he said that he couldn't tell me because a doctor needed to do that. I tell him that whether or not I get discharged depends on his professional opinion and he said that he thinks it's ok.
After this I'm really ready to get outa there. So I did. After Frankenstoma and I got home, I got an email saying I have new test results. The CBC does show that my counts are quite low. Tomorrow I will contact someone to see about getting another one.. to see if they stay low, are getting lower, or are bouncing back, that should give clues of whether or not the "fryable" tissue is still leaking or if an artery was nicked in there. The right thing for them to do is call me tomorrow to ask me to come in for the next CBC; me having to ask for it is a tiny slice of everything that's wrong with the American medical system. Right now I'm cranky about it, not hopeful that they'll reach out; if they do I will tell you and put my bitterness aside.
Yes, I'm sure once things start healing and settling down it will get better. I'll call it a Frankenberry then because I really don't think those weird rivets and bumps will go away (it's a stoma made half of the previous stoma and half of new colon). It is really, really ugly, y'all.