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Pyoderma around stoma

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Posted 8/8/2013 9:15 PM (GMT 0)
I saw my wound/ostomy nurse yesterday and she diagnosed me with pyoderma around my stoma. It hurts so bad and I am pretty sure that the layers of skin are separated between the ulcers. She has me using crushed prednisone and stoma powder mixture in the ulcers with a layer of what the bag is mad of and then putting my bag over top of that. I am to the point I do not want to eat. It incredibly painful when stool passes through. She said I have a perfect pattern around the stoma and everything. Chron's is just not giving me a break. I had the stoma placed in May (it's my 2nd one) and I didn't have this problem the first time I had a stoma. If I don't eat it won't heal. But if I eat it hurts so bad. I'm ready to ask my GI doc to have a PICC placed and go on TPN or something... It's painful to move around bc the bag pulls on the ulcers (I keep it as empty as possible). Especially if I lay down for awhile and get up it hurts. I feel better when I don't eat because theres no out put that still burns even though its covered. UGH!!!

Anyone have any advice? Help.
I'm afraid to ask for pain meds. I've read its painful. I haven't had a break from this flare of Chron's in almost 2 years... When will it stop??
Posted 8/9/2013 8:21 AM (GMT 0)
Andi, this sounds awful. Is your crohns being treated systematically, lilke with humira or cimzia? Have you seen your GI doctor about the pyroderma? Seems like a multi-faceted approach might help it get under control faster.
Best wishes
Posted 8/9/2013 8:57 AM (GMT 0)
You might want to at least check out things like IVIG therapy- There is a crohnie who maintains a blog called "waitingforthecure.com" who evidently had success for pyoderma around her stoma- check out her blog. IVIG therapy is super exoensive, not easy to get insurance approval for, and has some risks but in cases where nothing is working some more radical things might get approved and be worth trying- ditto more exotic biologics. Do seek second opinions and more specialist help given your situation. Best of luck.
Posted 8/9/2013 12:39 PM (GMT 0)
Thanks
I do get Remicade its been on hold bc I had surgery and an open wound thats slow to close and heal. But I think its time regardless for it. My GI doc is supposed to call early next week about it.
The pain is incredible and makes everything so uncomfortable.
Posted 8/10/2013 10:50 PM (GMT 0)
Andi87 - I am so sorry you are going through this. I had pyoderma for several months after my surgery. It was probably one of the most painful things I have ever experienced. What cleared it up for me were Kenelog shots and protopic cream. Thankfully, we caught mine very early, but it still took about 3-4 months to clear completely. Good luck!! I know; it is terrible :(.
Posted 8/11/2013 1:24 AM (GMT 0)
Omg that is going to feel like forever... My wound/ostomy nurse said that its one of the top 5 worst cases shes seen... I need to quit making everyone's top worst lists.. My GI doc, my surgeon's, the therapist, and now her.

I cannot keep a bag on anymore. Ever since I saw the stoma nurse I get a day and a half max out of a bag. The ulcers are just oozing so much now. My biggest one I could prob put a full sized m&m in. They are so painful. I feel like my life is a never ending string of painful problems and i will never not live around pain meds. Every time i wean myself off after a surgery or problem something else like this makes it painful to even be dressed, eat, and move around. Pain meds take enough off to let me half function. Just feels like razor blades under there...

I miss being healthy.
Posted 9/9/2013 2:38 AM (GMT 0)
Hi. Was researching Pyoderma and found / read these posts. Andi87, sorry for your difficulties with PG. My fiance was diagnosed with UC in '06 and endured several different therapies. She eventually had an ileostomy in 6/08. All was well until about 6 months after the surgery, then PG broke out all around her stoma. Nothing seemed to control it. In 2010, she had a stoma relocation. Again, all was well until about 6 months after the surgery. Taking Prednisone has not been productive. The PG completely surrounds her stoma. Last week she developed pain and pressure in her stomach and rectum (should not be in that location), and was admitted to the hospital for a week. No improvement. Now she is developing spots over her body that appear to be beginning PG ulcers. Going back to doc on Tuesday. I really, really hope that it is not PG.
Posted 9/9/2013 1:49 PM (GMT 0)
shakehead oh my goodness that is not good! I hope it isn't that either for her sake! Does she get Remicade by any chance? It's supposed to help. And they said cyclosporin (drug for people who have had transplants so they don't reject the new organ).
The doctors had me admitted for 4 days about a month ago and on IV antibiotics. It seemed to help for a little while.. The swelling, drainage, and pain was better. Now it has come back with a vengance. It is very swollen, painful, discharging pus, the skin is dying/dead around the stoma and falling off and keeping a bag on more than 3 hours at this point is a miracle... If I move the bag pulls on the open skin and is excruciating. The wound/stoma nurse sent me to the wound clinic and they want a biopsy done to see if it really is pyoderma or something else because it didn't respond to remicade. sad I am at my wits end with this stuff. I'm tired of the pain and just would like to be able to function.
Posted 9/9/2013 2:34 PM (GMT 0)
Andi~ and anyone else having problems that making keeping a pouch on difficult and/or painful. I haven't tried them myself, but there is a company that makes Non Adhesive ostomy pouching systems. It seems like this could be a great thing for folks having trouble with traditional systems. I tried to post a link to this before but it would not work. Just do an internet search for "Nu Hope non adhesive ostomy system" and it should pop right up.
Posted 9/9/2013 8:12 PM (GMT 0)
Thank you I will have to look into that :)
Posted 9/10/2013 10:45 PM (GMT 0)
Hey. We understand about the appliance changes. We usually have to change at least twice a day. When you tell that to others, they automatically think you're doing something wrong! The reason why is that we have to put a gauze dressing (silvasorb / Acticoat / or other silver dressing), before we can put the appliance on. There is very little skin for the wafer (if 2 piece), to attach to. There is like an ulcer completely surrounding the stoma.
She has been on Remicade before. It want to start making a paste dressing with a tacrolimus ointment (Protopic). It has been shown to have some success with healing peristomal PG with the addition of Prednisone and other systic steroid treatments.
Posted 9/11/2013 1:22 AM (GMT 0)
Ugh TG. I have pyoderma right now too (my treatment has been localized steroid injection every two weeks - which hurts like !, MediHoney - it's literally honey for wounds, Aquacell normal, and Hollihesive). They also changed my bag to a Marlen brand. It has a flexible flange that is soft on the pyoderma. It puts less pressure on it so it doesn't spread as easily and it hurts alot less. I change every two days but the pyoderma is not leaking that much.

I don't have all over sores, which doesn't sound fun (which is probably why your fiance is on oral steroids instead of injection). I hope you two find a solution soon.
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