Slowly eating me up

So the skin around my stoma hasn't been doing so well.  Which i guess makes me forget about the extra hole in my rear.  But the skin keeps getting worse. Saw the ostomy nurse again this past Tuesday and she put me on different antibiotics than she put me on about a month earlier when i brought up the problem the first time.  So now i change the wafer, or basically rip it off 'cause the pain was getting too crazy.  After i get it off i notice it's much darker red than before, and there are two HOLES in the dark red area.  Yes, small holes which blood was slowly coming out from.  Which would not only explain why the wafer won't stay on ( i assume it's not easy to stick to blood) and why it's killing me. All my doctors and nurses are great, which is why i don't really want to go to the ER and ask whats going on.  But i'm not sure how bad this will look come Monday.

If there is anyone that can share in this wonderful experience, i'm all ears.

 

My skin problem started just like that. The little holes eventually opened up into a sore/ulcer about an inch and a half in diameter. It stopped hurting a lot once it opened up, but it was impossible to keep a bag on. I changed almost daily. NOTHING fixed it. My docs and nurses, including my GI, my stoma nurse and a dermatologist, all swore up and down that it was NOT pyoderma. They took biopsies from the tissue, and even tried sewing the darn thing shut. Sad to say, I lived with it for 7 months until my 2nd surgery. about a week before that surgery, the sore strtedd to hurt again, and I mean something awful!! It began tunneling under my skin, and it went about three inches across my belly. Since I was going in for my step two of three, my surgeon put me on antibiotics, and said he'd check it out during the surgery. I woke up with my stoma moved to my left side!!! They still don't know what it was, but said it was horrible and just eating away under the skin, so they moved my stoma. I had my tempileo on my left side for two months, and never had a problem - go figure. I still think it may have been pyoderma. But either way, it was a pain! I hope whatever your is, it clears up. To keep bags on for longer than teh five hours it took for the sore to ooze blood and gook onto my wafer, I began using sure seals OVER my wafer. They are like huge pieces of tegaderm, shaped like a tire. So it fit around the hole of the wafer, and then was bigger than the wafer itself. Wet doesn't get through it. Since I knew it was the sore, and NOT poop, my doc said it was fine to leave it on that way for a day, even though you could tell the ooze was through the wafer itself. Does that make sense? IT's hard to explain. It might help you be able to keep your wafers on longer.

Good luck - let us know what happens.

Saw the surgeon and my ostomy nurse. Both seem to think it could be Pyoderma. The holes went from being small to pretty large real quick. Good amount of blood on the wafer when he took it off. Can't be good.
I have enough holes that i never wanted. Ugh

I really think mine was pyoderma as well. I hope you get relief from it! At least your doctors seem to be more willing to make that diagnosis. Mine - all 5 that I saw, would not, and it resulted in me needing to move my stoma to the left hand side. Be firm with them, and make sure whatever is going on with you gets treated! :)

justjenjen said...
Ok, not to be a party pooper, but mine did not clear up easily. It caused by my Crohn's, so although the derm helped a wee bit, the only thing that helped dramatically was prednisone to kick my Crohn's down a bit. It did clear up the p.g. (and had darn little affect on my Crohn's) but the side affects--UGH!! I don't even have to tell you! I'm so sorry you're dealing with this Slice!!!

I'm surprised they gave you Prednisone. Kenelog is also a steroid, but it is shot right into the PG, without any normal steroid-type side effects. I know it sounds painful. But, compared to PG, you barely feel the injections.

 

It's said, isn't it? I've never worked in the medical profession. Yet, I'm an expert in regards to Crohn's, ostomies, and Pyoderma Gangrenosum!

Well, i'll let it eat me up before i go back on prednisone. Although when my surgeon brought up the possibility of it being Pyoderma, he mentioned Remicade. But then paused because the week before i had a meeting with my GI and he said i was free of Crohns. So go figure.
Nurse is coming to my house tomorrow, can't wait to see how large the holes are now.

Heck, i'll take the injections. I've had worse pain than that.

Home nurse was here this morning. When i was at the surgeons thursday he had to make another hole to drain the garbage around it. I had NO idea he went so deep until the nurse this morning pulled out the packing and THEN TOLD ME IT NEEDED TO BE REPACKED!! Now THATS pain. Shoving the packing strip into a deep hole. Ugh. I guess on the good side the actual ulcers didn't look much bigger. So maybe it's slowing down.
I think next time she repacks this i'll take some pain meds. Woo Hooooo

Hey Slice - I have some left over sure seals...I don't need them anymore, would you like me to send them to you so you can try them over your wafer? They really were a godsend for me when I had my weepy wound. I could go *almost* two days, which at that time was great. The weepy stuff shows through, but the sure seals held. My email address is sfgiantsjo at gmail if you want 'em! :)

I don't even want to talk about it. I just got home from the Niner game. Ugh. 5 turnovers? Gawd. It was horrible.

I had them done at SF Kaiser with Dr Stricker. He's Amazing!  Are you in the Bay Area?

Cool, I live in Mountain View! I totally agree about the drive. UGH! But, you've got a great team working for you - I'm sure your reversal will go great. You must've gotten out of the hospital from your 1st surgery just as I was going in for my reversal (August 8th, 2008). Are you doing a 2 step, or a 3 step? I had mine done in three steps. My email address is in one of the replies above this one - email me if you have any questions at all, I can even come visit you in the hospital if you want! LOL.