Need help with Pyoderma Gangrenosum on stoma - Steroids not working!

Has anyone else had any experience with Pyoderma Gangrenosum? I've got it on/around my stoma, and steroids aren't doing anything to clear it up.

Hi ADKM,

Sorry to see no one has answered your post. I do know of another person who is dealing with a pyoderma gangrenosum at another forum. She too has been having issues with it healing. If you have a direct question, I will try to get with her and ask.

Thank you, I appreciate your offer. I don't have one specific question, I have a multitude of them! The most important would be, what, if any, treatments are available, other than immunosuppressants. I refused to do those to tame my Crohn's, and I have no desire to start them for this issue either.

Well, I am going to try to copy your last response and paste it to an email I will send her. I went to the other site today but no one was in chat, but then again, I was quite late getting there. No matter, as soon as she gives me any info, I will come right here and post it. I don't have full membership, so I cannot do it any other way. Off I go to email her.

I appreciate that! You are very kind.

No problem, that is why we are here, to help each other with what we have learned. Anyway, she replied and also had questions that she asked me...

Is her pyoderma near the stoma?

I can give you the instructions my nurse gave me (although one of the products is a prescription), but I'd feel better if she definitely had it diagnosed as a peristomal pyoderma.

I wouldn't want to tell her how to treat the wrong thing.

Once she's sure that she's dealing with the same thing I am, I'll give you the instructions for her.

The treatment is topical, nothing internal.

By your first post, I can see the answer is yes, so I will go ahead and let her know. Hope I can get with her quickly and pass the information to you.

Ok, here is what she sent me, hope it helps.

1. Clean peristomal skin.

2. Apply Diprolene Cream along the edge of the wound thinly with a Q-Tip.

3. Spray Chromalyn nasal spray to the red area of the wound.

4. Cover the hole (sore) with stoma powder.

5. Brush off excess powder.

6. Spray with skin prep (or use a wipe).

7. Cut a small piece of Aquacel and apply it to the wound.

8. Cover with a Coloplast sheet wafer.

9. Cover with a regular wafer and apply an ostomy bag.

Edgepark: Coloplast wafer #3210 (Protective sheet).

Pharmacy: Chromalyn Nasal Spray (Nasalcrom).

Prescription: Diprolene Cream.

I did suffer from pyoderma gangrenosum in 2010. However, the name sounds horrific, but having it in reality is even more tragic. My heart is with you. The pain is unbearable, and you feel like your skin is eating itself inside out. I am sorry I cannot help much as I had it in a different place on my body. I will also share my story here as this is the first time I come across a post talking about PG on this website. Read the CAUTION below if you don't want to read all the replies. I am telling my story to also let you know that you are not alone in this world. It does happen. This condition was on EMBARRASSING BODIES as well, a dude who had it in his leg. You might want to watch that too.

Apparently, it is a rare side effect for people who have IBD. I had 3 pus-draining surgeries because of PG. Plastic tubes (straw-like) were implanted in my forehead. The pus was so close to getting back to my eyes and the brain, which could cause severe intoxication (death was a possible thing too). They only told me that after everything settled down. Thank God... I have been saved again!!

I was too doped under painkillers, went to the toilet after the second surgery (the tube implants), the dressing came off and looked at what they had done in the mirror. Boom (the biggest shock of my life). I think I was in a panic attack, almost thought of suicide by letting the blood out of the drip syringe overnight. My belief in God is the only thing that had stopped me from doing so.

Treatment

PG had put me in the hospital for 22 days in the summer of 2010. I was on all treatments that had proven efficiency with PG as it was very dangerous in my situation. So, all types of intravenous antibiotics then followed by steroid injections and finally anti-TNF blockers (double doses of Remicade). I was seen by an average of 10 doctors every day as they have never experienced treating such a condition. They had to take photos and talk to doctors in London and even a dermatologist in India to reach that treatment plan. They told me at the hospital the key is to keep it always clean and to change the dressing every 2 days max when I get back home.

The treatment plan worked for me. 3 months later, it was fully gone, leaving a large scar on my face. Luckily, I have massive hair that covers what happened there.

I had a couple of PG flare-ups, but they were minute and were overcome by a low dose of oral steroids.

However, I had experienced some really bad downs with colitis, arthritis, or even the ostomy, but PG is the worst I have ever come across so far, and I won't wish it on my enemies EVER. It is disfiguring!

......................................................... CAUTION.............................................................

MY ADVICE TO ALL PEOPLE WHO HAVE IBD. Once you have a spot that's only going WORSE and there is AN INCREASE IN pus discharging OVER 3-5 DAYS... DO NOT WAIT. EVER. It starts very small like acne/small abscess. IF YOU DON'T GIVE IT ATTENTION from the start, IT WILL eventually eat/rot your skin. I am not scaring you to run to the A AND E once you have a spot. What I'm saying is to keep an eye on it and to warn the doctor that you have IBD and this may be something else. A stupid ignorant doctor at the A and E sent me back home with 250mg antibiotics. He thought I'm overacting the pain of an abscess. 3 days later, I was in the operating room.

May God be with you...

Hiya ADKM.... Great question.

First, do you wear a barrier ring with your appliance? And do you wear a convex appliance...

When I was a new stomie newbie, I got into skin trouble as the output was seeping under the bag....

My solution was adding a barrier ring to myself prior to placing my 1 piece.... Within days of no output reaching my skin, I started to clear....

I shower every day but only change my appliance every 7... I was also told if you're flushing your pouch, don't push water up to or past the stoma as water can seep under the barrier, but with the barrier ring, I flush the whole area with no issues...

Make sure when the pouch is off, the area is clean and very well dried... I know many will say, "How does a ring help?" Trust me, it does. It's wide, covering more skin area than without one. The secret is to get the ring as close all around the stoma base, then place the pouch as usual.

Hope this helps. Happy Friday.

Tracy