The hits just keep on comin'

saw my GI doc today and he isn't convinced that I have pyoderma b/c it hasn't been tested, we (meaning the surgeons) basically excluded everything it could and and were left with pyoderma.  He doesn't like that so now I am going to dermatology where they will take a biopsy -HOLY CRAP!!!  Seriously SO over this whole thing, I am really starting to feel like a freak show.

 

I went through it!! The biopsy really won't tell you either way - I had one done at Mt. Sinai. All it really says is that there is indeterminate inflammation. That can or may not indicate PG for sure. There really is no way to diagnose PG per se, it is the disease of exclusions, from what I have heard.

We never actually found out for sure that mine is PG, but the surgeon out of Mt. Sinai said it sure looked like it, and he's seen it before. Also, it responded well to the treatment for PG.

I had THREE doctors, three residents, and an ostomy nurse tell me "not pyodemra" before I went to the surgeon at Mt. Sinai. From what my GI told me, most doctors see PG once in there career if at all. She said she had seen it once (in practice for over 30 years), and non of the residents, the ER doctor, or my surgeon in NJ had ever seen it. AND, this is a teaching hospital we are talking about, and the best in the state I might add. My surgeon was going to send me to one of his associates who had treated one case in her career. I guess he considers one case "experience."

PG is NASTY and looks like the worst, ugliest infection you ever had BUT you don't run a fever OR WBC count may not budge from normal. Mine didn't. Also, mine started out like a redish bump about the size of a quarter right next to my stoma. At first I thought my stitches had separated from the stoma. Within a couple of weeks it turned bright purple, the skin was EXTREMELY thin and VERY painful (severe burning, not so much sore) to the touch. The first ulcer formed right around then too. Antibiotics do nothing for it really - it is not an infection. It is an autoimmune skin disease. I was on Flagyl and Cipro interchangably for 10 days and the condition got worse if anything. I think the only way the antibiotics may help is if the PG becomes infected due to being an open wound. The antibiotics will knock out the infection, but they won't address the underlying issue.

 

B U M M E R !!!   Hang in there