i have peristomal pyoderma gangrenosum also :(

Oh and I have a cyst on my left ovary - YAY. After the doc read the CT scan and came in the room to tell me all about the bowel, lack of pus pocket etc. she slyly threw in "and you have a cyst on your ovary" not specifying which side. I told her I figured I did as I was having some keen pain that felt like I was in labor and maybe this means I will be starting my cycle again as that is when I usually get the cysts. We had been going back and forth at each other all day with smart ass comments and such and she asked me "well, which ovary is the cyst on". I said it's on the LEFT one - you think after all we have been through together I would lie about a CYST?! We started talking about treatments for the pyoderma and she said "how do you want to do this" referring to where did I want to pick up my Rx and I said I'd prefer it with a shot of vodka. Oh we got a good laugh, I'm glad to have such a rapport with her, I'll certainly miss her when she deploys.

Oh . . . one more thing - pyoderma is excruciatingly painful. Even a mild case had me crying out in pain at times. It literally felt like there was a fire blazing on my skin :(.

I caught mine VERY early. I researched it on the Internet, pretty much as soon as the first pin-head sized ulcer developed. As small as it was, I couldn't even hover my finger over it without causing trememdous, burning pain. Right after that a couple of other smaller holes developed in the general area of the original. My surgeon would not diagnose it as PG, and basically told me to back off - it wasn't that. He prescribed me three rounds of antibiotics over a month's time, from when we noticed it on December 29th, till around the middle of Jan. At first the anibiotics worked a bit. Soon the PG came back hard, and the ulcers were growing and so was the circumference of the affected skin around the ulcers (which hurt just as much as the ulcers themselves).

My surgeon was down right arrogant with me - told me he wanted me to come in for a full debridement in the OR, but when I asked him if he even knew what I had, he said, "no." He still refused to admit to PG, but I later found out it was because he didn't know how to deal with it and had never seen it. My surgeon is one of those perfectionist types, and has to master every aspect of a case. He didn't even want me to get a second opinion from someone other than his associate, who was out of network for me. After a while I said "screw it," and off to Mt. Sinai I went.

I was on Percocet for a bit, but mostly have muscled through the pain. I do take a pill or two when I go for local injections, otherwise I would never be able to deal. The day the sureon took a biopsy was probably the worst. He put a metal rod through the largest ulcer to the smaller one, pulled up, and cut off the skin. I literally saw stars on that one.

I have had a lot of success with this treatment plan. The injections knock the disease down, and the cream takes care of the rest for about a month. By the end of the month, the PG starts to come back. It has come back twice so far. The first time was about a month after my first injection, at the mid-end of Feb. Now it is trying to come back again, but the wound has completely closed over now, so it will have to work to start breaking things down again. We'll see, but the burning pain is back on and around the scar. There is no discharge yet though.

I'll go for injections once a month for a couple of years if I have to as long as I don't have to take oral meds again. As far as Remicade goes - I had my colon out to avoid that drug. It would take a lot to convince me to get those injections now. Basically I'd have to be at death's door.

Went back today to have a wound vac put on my butt and my WOCN changed out my pouch while I was there - OMG, it didn't hurt when I took it off! That is a step in the right direction. My surgeon even agreed that it looked 50% better than yesterday! I still have the open area where I was lanced when they thought it was an abscess and the WOCN irrigated that and holy heck that hurt b/c it is tunneled from that spot up to right at the subcutaneous junction of my stoma and skin and the flush came out that space. The surgeon has me wicking that abcess lanced area with some packing tape just to keep it open and we put the topical steroid inside when we do it and that seems to be helping.

I go on Monday to have the PICC line put in and start 2 IV antibiotics - how the heck am I supposed to work when 1 of them is twice a day and the other is 3 times a day and they can't be given at the same time b/c of contraindications!? Oy. Also got the news that they want me to do Cimzia once a month probably forever. darn this Crohn's disease! I developed antibodies to Humira which is why we aren't going down that road and she said they also ruled out Remicade b/c I had developed antibodies to it in the past as well. Apparently you aren't supposed to be able to develop antibodies to Cimzia - my husband tried to explain and I just nodded.

My surgeon did mention the injections and before she could even get it out of her mouth all the way I gave her "the hand" as in stop right there!! My WOCN was in agreement that that should be our last resort in the way of treatment THANK GOD. Looks like we had our surgeries about 2 weeks apart. You first noticed yours about 1 month after surgery, mine didn't come about until about 4 weeks ago so I guess about 2 months after surgery. The doc said today it may have surfaced sooner but I was on SO many things in the hospital and that it was almost like once I finished the last round of IV antibiotics is when it reared it's head. Ugh, I hope we both get rid of it and it doesn't come back!

Please keep updating your journey for me if you don't mind and I will do the same - I like learning from others and researching the different ways people go about treating the same things.

Interesting riddle me - every 3 days?!  I wish I could go that long - she has me changing everyday right now, maybe by Wednesday it will be well enough that she will let me go a couple days in between.  My WOCN had mentioned the Kenelog but my pharmacy doesn't carry it - I told the doc I had no problem going out in town and paying for it but she said we should see results with this ointment and we have.  It sucks that we are all dealing with this!!

Oh dang headphones - you have been through the ringer. I have my first appt. with dermatology today and then all the talking heads are supposed to get together and decide what the next step is. The topical ointment is helping it to not spread and it is slightly better but not gone - still red/pink with the little pinprick size holes. They aren't oozing anything which is good but I sure would like it to clear up - I don't want to go back on preddy but if it will help I will do it, ugh! Sorry you are going through all that, hopefully it all takes a turn for the better for you! Thanks for sharing your experience.