Possible PG with iliestomy

[scotishcanadian]

Hey guys, so I've had my ilieostomy for going on 6 weeks now. It was healing up fine until I started noticing a slowly growing gouge on the left side of the stoma. Now it looks like a crater. I went to my dermatologist last Friday and he said it looked like PG, so he took a sample to see what it is was for sure.

I was just wondering: has anyone had any experience with this? My stoma is constantly leaking into the crater and making it so I frequently have to change the wafer. It's very annoying to deal with and stressful to constantly be worrying about a possible leak.

 

[2thFairy]

I don't, but I know someone here with a stoma recently was having issues with this...just can't remember who. Stick around and I'm sure they will pop up and respond.

 

[hopeful]

I had that (wasn't PG but they suspected it was). Resolved with using Eakin seals (and now use SecuPlast seals from UK). They absorb all the moisture and provide protection which enables healing.

 

[Jaano711]

Probably a no- brainier, but, what is PG?

 

[Samboi]

I had a huge and most alarming crater.
The Stoma was totally detached from the skin.
I would look at and cry and wonder how it would ever heal.
It was a sign of active disease and eventually cleared up after I started using Humira.
In the interim - until it healed - I used the wider Eakin seals to cover it all up and stop leakage into it.
I hope you don't have PG

 

[scotishcanadian]

Hopeful, I use an eakin seal along with the other parts of the elaborate get up my wound care nurse has me doing for my dressing at the moment. I pack the crater with special silver gauze, use second skin, ekin seal ring, skin protectant, and then a convex wafer.

Jaano, PG is pyoderma gangrenosum.

Samboi, that's the problem I'm having though: no medications work on me for crohn's. My signature says it all. :\ I'm praying that it's something that can be fixed with an injection or topical cream. I've put in for a stem cell transplant with my insurance company, but I'm now on my fifth appeal with them and almost a year out of when I first applied for it. I thought the ostomy was supposed to fix everything, but right now it's just making things worse.

 

[Samboi]

You poor darling.
I hope you're not in too much pain.
I remember how painful it was.

 

[scotishcanadian]

Samboi, I'm not in too much pain as of right now. It's been much better since Monday when I saw my ostomy nurse and she gave me convex wafers. Almost three days, and so far, no leakage that I can see! :] I finally get to take a shower tomorrow! Woo! [I've been waiting almost a week to do so with everything that's been happening with the wound. My dermatologist said not to take a shower without the wafer on, but I also know that hot water can mess with the seal of the wafer. Do due to that, I've been eagerly awaiting the third day when I get to change the dang thing to take my shower and get clean! :]]

 

[PsychoJane]

Hi! I have never dealt with PG and needless to say I hope for you it is not that. As you said, we all hope the ostomy to be the resolution of most our problem and I can see how dealing with this would make all that tricky =(
I know there are a few way to treat it locally even though it does not mean the disease will be compliant. Like Tacrolimus or pimecrolimus cream, or sometime steroid cream. It often requires a systemic therapy. I see you have tried a lot of therapy for your CD, now, would they be inefficient in treating the PG?? That, I can't tell. I think there is also a way to treat it with certain antibiotherapies but I can't recall which one on the top of my head. Hmmm, there is cyclophosphamide that can be beneficial for PG but I think it has to be major PG for them to consider its use. On the other hand, cyclophosphamide is generally used within the steam cell treatment... So as a last resort it could possibly considered as a treatment. IVIG maybe?

Did you dermato suggested any ways of treating it or he is just at the diagnosis part on his side?

 

[scotishcanadian]

PsychoJane, my dermatologist said he couldn't tell me exactly what the treatment would be yet since the test results from the sample haven't come back yet. I should get the results by this Friday, hopefully. He said the treatment will depend upon the diagnosis. Until then, he said to have my wound care nurse just treat the wound. She's been packing it underneath the wafer with silver gauze.

 

[PsychoJane]

Silver is one of the way to go for PG and well, for many other conditions so hopefully this will help. Thankfully your condition will be managed quickly!

 

[annawato]

i fins showers mess with the flange too. They don't affect the seal - you could probably swim all day and be fine, but it does make the edges gooey and then they harden and dig in - with my flanges anyway. To overcome this i use Brava tape around the edges. Its fabulous. Any tape, such as micropore should help but I really like the brava tape. Coloplast should be able to send you out some samples to try.
Sorry about the PG. I don't know anything about it so can't help there but I can empathise about having no treatments available - I've also run thru all of them - keeping fingers crossed stoma will help this time.