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Posted 10/13/2012 5:31 PM (GMT 0)
I was dx'ed with peristomal pyoderma about 10 days ago. I was already on 12.5 mg's of steroids. They gave me a nice shoot up of dermal steroids. I also have a brand new super soft ostomy system which has made a world of difference with pain!

I'm a bit stressed because the pyoderma seems to be spreading :(. It looks like it's crawling up the side of my stoma, which is what's really bothering me (not on the stoma but on the skin flush against the stoma).

I have an appt. already later this week for post surgery stuff and for pyo treatment. I guess I'm just looking for assurance that everything is going to be fine... it's not uncommon for it to spread, that it can go all the way around the stoma, etc.

Believe me though, I'm on the phone first thing Monday morning to the surgeon's office or WOCN staff.
Posted 10/13/2012 8:32 PM (GMT 0)
A few of us have had different experiences with this. I can tell you, based on your screen name, you don't have a lot to worry about unless you still have part of your colon/rectum still inside of you. When I had PG I had had everything removed with no prospects of a j-pouch. In fact, doctors were very skeptical to even diagnose my case because it is unheard of for someone with UC, without a source of inflammation, to get PG. I did have it though, and although it started out aggressive, the treatment knocked it down in less than three month's time. We used steroid injections AND Potopic cream. The injections were most effective out of the two, but the cream helped too.

If you are going for a j-pouch, and it does spread, it will go away after the stoma is taken down. Bottom line is that it is better to have PPG with UC rather than Crohn's under any circumstances. PG generally doesn't exist on its own; it needs an underlying source of inflammation to keep it going.

GOOD LUCK. Of all the things I have endured since my surgery PG was the worst. I feel your pain, but it will subside one way or another. Hang in there!
Posted 10/13/2012 8:34 PM (GMT 0)
One more thing: Don't be surprised if your skin and surrounding tissue is very thinned out in those places where the steroid injections were given. This happened to me, and it was from the injections. The skin and tissue will repair themselves again, but it will take roughly 6-8 months.
Posted 10/13/2012 10:02 PM (GMT 0)
Thanks UC_Free. I do have some rectum left right now (3 step jpouch, too many drugs, rectum left in to deal with later without drugs in my system). Maybe some of what I'm experiencing is skin thinning already (below the pyo). The "spread" seems to be above the rest of it. Def. thanks for that warning.

It's funny - ActiveUCer was meant to refer to the fact that I liked doing things (exercise, etc.). I had never read it in the other way but it makes alot of sense!

It sounds like you've had a rough pyo road. :(.
Posted 10/14/2012 12:54 AM (GMT 0)
I am battling my pyoderma still. It came around in April but we didn't fully call it pyoderma until June maybe? We were trying all the creams, ointments, etc. before injections or oral steroids. I had my first set of injections last month and go for my second round on Tuesday. They DEFINITELY made a HUGE difference. I continue to use protopic ointment as well. I am having a mini-flare so to speak (happens every month when I start my period) and there is a definite change in the pyoderma and it is NOT for the better.

After the derm appt. on Tuesday I go straight to my new GI and will be starting Cimzia so hopefully the injections get a chance to do what they are supposed to do without being in battle with inflamation.

http://detouredfashion.blogspot.com/2012/09/its-getting-real.html is the direct link to my blog post where I share my battle with pyoderma and reveal pictures. In addition to the pyoderma I now have some other skin issue going on under my wafer and randomly on other spots of skin on my abdomen. We tried treating it as a fungal infection with no result. Then tried treating it as contact dermatitis, no help either. I was on a good dose of Flagyl for something else and it seemed to be helping and then BAM started my period and it reverted as well. Definitely think it has something to do with underlying inflamation. Anxious to see what happens after this injection and I may ask the doc to let me do another round of the antibiotics to see if they make any headway being as my cycle JUST ended so we have a good chunk of time to get things turned around.

uc_free was a great help to me when I was in the beginning of the pyoderma mess!
Posted 10/14/2012 1:14 AM (GMT 0)
allbluezoo - I checked out your blog. I love your warning - "it's about to get real" before the picture. I've been too worried about putting my pyo up on my blog worried about freaking people out. And it is gross.

What do they have you doing for your system? I've been using stoma powder, the seaweed stuff (all care?), then hollihesive, then a soft Marlin bag (or is it Marlon). The hollihesive has fortunately been not that painful coming off. I remember pulling the hollister bag off before I was dx'ed. Owwwww!!

I read a few more of your blog entries and I agree with some of your sentiments on "being strong" - I've had some of those comments made to me too ("you are so strong"). I tell them "No, I definitely have bad times." I've cried. What else am I supposed to do but accept what I have and try to live my best life possible. At the same time, I tell myself there are people out there dealing with such worse stuff. Having their child deal with terminal cancer and smiling with them ever day. Families losing military personnel overseas. These people are strong.

When I was at the doctor for an arthritis dx, she was like "wow, you have been through the ringer" and my automatic response was "I could be facing worse things." But the things we deal with do suck. When I started my blog, I can't tell you how many people were like "holy cow - this is what you've been dealing with? I had no idea." Because like you I just sucked it up.

Anyway, end random tangent.

I hope we all get some improvement with the pyo.
Posted 10/14/2012 1:17 AM (GMT 0)
I also want to comment - I was eating pizza while checking out your pyo pic. Now I can read about all sorts of manners of poo while eating lunch, and read about all sorts of painful sore while eating dinner!
Posted 10/14/2012 1:37 AM (GMT 0)
PG does stink for sure! Melissa, I saw your picture and mine was in the exact same spot around my stoma! Weird! Anyway, this may help all of us, but with PG you do change your appliance a lot more often due to applying the medication AND drainage from the PG itself. Anyway, I started to realize that, yes, I do have allergies to some products, but pulling the appliance off so often for so long irritated and dried out my skin. My skin also always got much worse around my period (and still does break out mildly). What has helped, believe it or not, is a very light layer of Aquaphor cream which my dermatologist at Mt. Sinai recommended as a barrier, since I am allergic to all other skin preps. The cream does not interfere with the adhesive AT ALL as long as I use a light layer. Since I have begun that regimen, I am having almost no skin reactions and am getting FIVE days of wear time. This is huge for me. I had not gotten five days of wear time since my surgery. This is one other thing to try.

ActiveUCer, my battle with PG was not nearly as bad as it could have been. What made it so much worse for me at the time was that I had opted for a permanent ileo to put the nightmare to rest. When I ended up with the rarest possible case of such a painful complication, well, let's just say I was discouraged. No one wants PG. It sucks, but you will prevail. Once that rectum comes out there will be no source of inflammation for you. There is absolutely a light at the end of your tunnel. Hang in there.
Posted 10/14/2012 1:48 AM (GMT 0)
Do WOCN's tend to know about Aquaphor?
Posted 10/14/2012 2:12 AM (GMT 0)
I have aquaphor - keep a big tub of it for healing tattoos :) It isn't a cream though, it is clear? May have to try that but I don't think anythign will stick on it. May have to make a trip to Walgreen's and see what they have.

Thanks for the kind words on my blog, I'm trying to be as "out there" as I can so that people that read it get a full picture of what I am dealing with (as well as others!).

Initially I started with a steroid ointment on the area 2 weeks on then 2 weeks off I would use the silver powder. Then we switched to the Protopic and saw good results. Had an incident where my little one hit me RIGHT on the pyoderma with the corner of a kitchen drawer (total accident) and I basically went 4mos back in the healing process. At that point it was deep enough to hold a dressing so I was placing aquacel in it. The healing started again after the steroid injections and I have just been using the protopic.

You can check out my "process" in this blog post http://detouredfashion.blogspot.com/2012/09/q-what-is-process.html it does get very wordy but I wanted to make sure people that had NO idea what pouching entails got the full picture :)

I tried a Marlen pouch Thursday night and by the time I walked downstairs the only thing keeping it attached to my body was the stomahesive paste I put around the opening :(
Posted 10/14/2012 11:53 AM (GMT 0)
Right - actually Aquaphor is more of an ointment. You wouldn't think the appliance would stick, and initially it doesn't completely around the edges, but the Aquaphor actually adds to the adhesive as it absorbs. Also, I apply it in the area around my Eakin. I don't put it all over. It has absolutely helped my eczema under my wafer. I knew I wasn't allergic to the Coloplast brand, but my skin was just so sensitive from being traumatized for so long.

No, I don't think the WOCNs would know about this. It came as a suggestion from my dermatologist at Mt Sinai.
Posted 10/17/2012 10:18 PM (GMT 0)
allbluezoo - I just saw your video via "My Doctor Knows Me Best From Behind" link on Facebook (unless there's another allbluezoo out there with pyoderma!). I'm hoping they numbed you up a bit first?!!

I go in for my shots tomorrow. Maybe I should have watched the video later this week, haha.
Posted 10/18/2012 10:14 PM (GMT 0)
Oh I am glad you got to see it! I REALLY wanted to let people (the few of us that exist LOL!) know that it isn't that bad. You can hear me talk through the whole thing, no high pitch shrill from pain or anything. They mix the steroid with lidocaine so after the 3rd poke I really couldn't feel anything. I put up another video/slideshow showing the progression of my pyoderma - my channel on youtube is allbluezoo :)
Posted 10/19/2012 12:45 AM (GMT 0)
Thanks for sharing!

I didn't get any lidocaine today :(. It wasn't too bad, although on the third or fourth shot, my arm went out and hit the Doctor's. Reflex, haha. Don't hit the doctor who has a needle in your stomach ;). Fortunately, nothing happened.

Good news, my pyo is improving. Bad news, I still have to travel to go get my shots :( (at least 7 hours driving for a round trip).
Posted 10/19/2012 2:33 AM (GMT 0)
Whew...glad nothing came of that slap LOL!

Happy to hear it wasn't that bad - will you go back for another round? Sorry about that drive - mine is 1.5hrs roundtrip, nothing compared to yours!
Posted 10/19/2012 2:55 AM (GMT 0)
Yeah, I have at least one more round. The bad thing is I'm dropping my prednisone still. The WOCN was new today and she just looked at me in shock ("you go this while on prednisone...and so soon after surgery??").

Even though it's getting better, I'm guessing I'll have two more trips at least.

Fortunately I'm driving to the Cleveland Clinic, so it's worth the trip!
Posted 10/21/2012 4:14 PM (GMT 0)
Oh man! And the oral steroids weren't helping at all?! I'm so glad we were able to avoid that - here's to hoping the injections continue to be helpful for both of us!! Did you check out my progression compilation? Is yours similar? I'm always curious as to what others look like - I'm weird I guess LOL!
Posted 10/21/2012 6:12 PM (GMT 0)
Well, they might have helped the first two weeks? I was on the Prednisone for the UC (40 mg for a few months, 20 for a few months, then up/down for the 7 months previously). I am tapering after surgery. I think the pyo ulcer appeared around 15 mgs. I have to be off the steroids for jpouch creation :(. I want off of them anyway.
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