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uc_free - pyoderma question

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Posted 6/9/2012 6:50 PM (GMT 0)
First, so glad you are feeling better and sad that the skin thing has followed along to the other side of your body!

When you were battling the PG did you ever try medi-honey?  I remember using it on my abdominal wound and have read others used it on their PG with success.  I'm back to having pus coming from the small holes along with one larger "crater" now to the left of my stoma extending out to my abdominal incision scar.  I can't even tell if I am getting better or worse anymore, it just sucks altogether.

I'm off the topical steroids for the next two weeks and we are back to the silver powder for the antimicrobial properties - I'm getting quite a "dip" around my stoma so I am covering the powder with 1/2 a stoma ring to even things out, we'll see how that goes.  I'm afraid it is going to cause a leak, only time will tell. 

I had been doing well with the pain, but it has returned so I think I'll need to call in for a refill on my pain meds :(  I can deal with it if it isn't painful, but OH the pain - you know what I am talking about.  I fear I may have to have it moved like you did and that it will just follow over to the new site.  Not to mention, my surgeon is still deployed and I don't want to do anything without her.  Did I read correctly that they were able to do yours completely laproscopically?  I hope if it comes to moving that lapro is an option for me.

Posted 6/9/2012 10:05 PM (GMT 0)
Hi, allbluezoo,

I am upset reading this!!! I never used the medihoney because I had a lot of luck with the basic regimen of protopic and steroid injections. I believe I was very lucky with the results I had.

I did not have my surgery done laproscopically. My surgeon used my old stoma site to push the ileum over to the other side. He was unsure whehter or not this would work out due to scar tissue, etc., but luckily, he was able to do it less invasively.

I am sort of in a panic now though too. When he closed the original site, he was able to do it in a clean horizontal line, where the scars from the original PG are on the underside, but clearly visible in all of their purple, thin-skinned glory. Well, I noticed the scar portion separating from the skin above almost right away, and that part was quite sore. Now there is drainage coming from the area, and burning pain is setting in. I pray this is not the PG returning, but with the luck I've been having, I'll bet it is.

So far, there is no fever, and the area isn't really tender, AND it doesn't really look like the last time, but who knows?
Posted 6/10/2012 1:15 AM (GMT 0)
Sorry, what is PG?
Posted 6/10/2012 3:56 PM (GMT 0)
pyoderma gangrenosum
Posted 6/10/2012 6:58 PM (GMT 0)
Oh dear :( I haven't gone the steroid route at all yet as we were hoping to be able to use it as a last line of defense - which seems to be what I am going to have to do. I just don't know if I can do the injections right into the area - I want to pee my pants a little just thinking about it. I wonder if they would Versed me out for that - ugh. The topical stuff has definitely done what it is going to do and stopped and I REALLY don't want to do oral steroids :( BUT, I will if that is what I have to do - just hate it so much.

I woke in a good bit of pain this morning which means I'm going backwards instead of forwards as far as treatment progress is concerned. Hmphf. I think I'll make an appt. to see the GI this week - who did you mostly see for the care/treatment of it? I've seen the derm 1 time and I have never seen my new GI in the office LOL! We discuss on the phone, he sees pictures, etc. but most of my care comes from my backup surgeon and the WOCN.
Posted 6/11/2012 1:03 AM (GMT 0)
I actually went to a brand new surgeon for my PG as the one who did my original surgery had no idea what it was. The steroid injections aren't that bad, I promise. Pop a pain pill about an hour before your appt, and you'll hardly feel it. I am telling you, the pain of the injection PALES in comparision to the pain of the PG.

I really believe that the steroid injections worked most, and the Tacrolimus cream did the rest. I saw immediate improvement after an injection, followed by gradual improvement with the cream. I needed two injections. I had the PG brewing for almost a month before treatment started, then it was exclusion time for another 2 weeks. It was the middle of January before I got to the city to the guy who knew what he was doing.

By Feb I needed one more injection because the healing had stalled. By March it was CLEARLY improving, and by April there was no more PG with the exception of scars. I continued to place a dressing over it until the day of my surgery just because the skin was so thin and not ready to face the wafer head on.

Do you cover the area with a dressing of sorts? I covered mine with Aquacel after applying the cream .

I'd definitely try the injections before going the oral route. Too many side effects and I hate steroids.
Posted 6/11/2012 2:01 AM (GMT 0)
Sorry to intrude on this thread, just wondering how long you had this, did it occur after surgery. about 5 years ago I had what I thought was cellulitis on the back of my knee, started off like. Bug bit, then got bigger, opened up and my whole calf turned red, I went to the ER and got intravenous antibiotics, and a script and it cleared up gradually, I still have a little scar. Also had shingles on eye and head, but pretty sure it was that because I had that paralyzed feeling and tylonel helped, and it was delineated down the middle of my head and face. Does it reoccur often?
Posted 6/11/2012 2:50 AM (GMT 0)
I've been battling it for ohhh - almost 3 months now :( It is progressively getting worse, most recently a large area to the left of my stoma just disappeared between pouch changes. I have a recent picture of it, if I can find the thread with the photobucket account info I can post a pic there. Definitely calling the GI tomorrow to see if he is comfortable moving forward with another treatment or if we should get the Humira in full swing. I'd rather attack from more than one side.
Posted 6/11/2012 11:50 AM (GMT 0)
Hi allswell,

Pyoderma doesn't clear up on antibiotics alone as it is not an infection, per se. It is an autoimmune skin disease. It needs to be treated the same way an autoimmune disease is treated, and for some, finding the right type of med to treat it very difficult, unfortunately.
Posted 6/11/2012 6:56 PM (GMT 0)
Yes, but is it possible to have an occurrence that clears up on it's own after 2-3 weeks. The description I read sounds exactly like what I had. Started off like a bite, then just opened up, got pretty big, like the size of a quarter or two, then the redness spread down calf. I remember thinkinking it was really weird, but it was five years ago.
Posted 6/12/2012 2:01 AM (GMT 0)
In all the research and talking to people who have had episodes of PG, never has anyone said it just cleared up and went away on its own. Dang, that would be nice though LOL!
Posted 6/12/2012 2:19 AM (GMT 0)
Thanks
Posted 6/15/2012 2:07 AM (GMT 0)
Did you guys have instances of it prior to surgery, or prior to your stoma? This sucks, but I am really worried now. I was close to making up my mind to go the permanent ileo route but this prospect has me scared. I posted on uc and someone there has it, but they seem to clear up on her skin with only a little treatment .
Posted 6/15/2012 2:20 AM (GMT 0)
Nope, nothing prior to surgery. It is a manifestation of the crohn's for me and my WOCN says she actually primarily sees it in her diabetes patients on their legs. It is SUPER rare - like 1 in every 200,000 ileostomies I believe she said?
Posted 6/15/2012 3:51 AM (GMT 0)
So if you don't have one of these underlying diseases you are not likely to get this PG? Rosemary

PS Sorry to hear of those of you who have it. That must be horrid. Just hoping I don't get any new issues with my new stoma. I don't think I could deal with one more thing. RJ
Posted 6/15/2012 10:38 AM (GMT 0)
You shouldn't, Rosemary. I shouldn't have either, though. Apparently I had no sign of disease from Crohn's, which I don't supposedly have, and my surgeon told me that it is unheard of for a person with UC and no source for possible inflammation to get it. Well, guess what, odds don't matter when it comes to me. Also, it appears that I have a silicone allergy. Another (almost) impossibility, especially since I've never had breast augmentation, but here I am amazing the medical community again.

There is no chance I'd play lottery though; the odds are never in my favor that way.
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