Pyoderma gangreosum

• By Joe-R (Inactive)
• Reply 3437263
• October 6, 2012 at 8:24 pm
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Hi Jonsey,

I had to 'Google' what the Doc. and Stoma nurse
said you have!! If any one wants to know more about
it here's Mayo Clinic's info. on this rare occurrence.

http://www.mayoclinic.com/health/pyoderma-gangrenosum/DS00723

You will have many people lifting you up to the Lord for your
healing, my family and I included !!

Please keep us updated!


God Bless,
Joe

• By Jonsey
• Reply 3438320
• October 7, 2012 at 10:36 am
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Thanks Joe, I am going to look this up right away on Myao Clinic site. God Bless you for taking the time to look this up and sending it to me.

Marilyn

• By MABsprings
• Reply 3440751
• October 8, 2012 at 10:35 am
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Hello, sorry you have this. I too got it right after my last surgery,right next to,and on the right side of the stoma. My Docs injected all around the ulcer had to have it done 4 times, but it's subsided. He used Kenolog injections.Hope this helps. Take care, Mary-Anne

• By Jonsey
• Reply 3441543
• October 8, 2012 at 3:04 pm
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MABsprings, Thank you so much for telling me about your problem. I guess it makes me feel better to know that I am not the only one this has happened to. I go to my GI doctor this Thursday. I have written down the type of injections you got, so I can tell my doctor. Can you tell me Mary-Anne, how painful was it when they did the injections. Also, when you had the pyoderma did it burn and hurt a lot? That is the problem I have, is that it burns and is so darn sore. When I change my appliance, it just about kills me. Because this ulcer is right under the wafer. How long did it take for yours to heal? Did you have Chrons?
That is what I have and the doctor said that some people have this pyoderm gangreosum after surgery. Only like 2% of the people have this problem after surgery. Lucky me, I am one of that 2%.
Thanks again, God Bless all of you here for all the support you are giving me and all your prayers. That makes me feel so much better, knowing all of you care so much.

God Bless, Marilyn

• By DrTReese
• Reply 3511619
• November 3, 2012 at 10:28 am
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Marilyn,
I'm sorry I missed this post earlier, but I had the exact thing for the same reason - Crohn's 2%, aren't we special?! My WOCN at Mayo in Jacksonville helped me through this w/ treatments of oinment, silver patch, and DuoDerm on top of it all... Although mine took 1 full year to heal, and kept using DuoDerm Extra Thin (like skin!) for another 3 months - it finally vanished. So - Please feel free to touch base here or email at treese2@aol.com
I hope by now you have some relief. For me, once I started thist treatment the pain subsided, and appliance changes were a little uncomfortable, but not painful... Blessings and prayers!! Terri

• By Jonsey
• Reply 3512279
• November 3, 2012 at 2:40 pm
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Terri,
Thanks, so much for sharing. I am doing the same treatment you did. It isn'a as painful now as it was at first. It still looks really ungly though. I have had this for almost 3 months now. It is now starting to look a littler better. Did your doctor put you on Humira after you got the pyoderma gangreosum? I am now taking that. I will e-mail you.

Hugs, Marilyn

• By DrTReese
• Reply 3512680
• November 3, 2012 at 5:30 pm
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It isn't pretty is it?!
I was on Humira before my surgery. We stopped it after surgery in the hopes that the procedure itself would put me into remission. So I have not taken it since. BUT when I did take Humira, it helps a lot with symptoms/pain. I was steadily increased until I was taking 1 injection each week.
The good news is that this is only temporary and you're on your way to good skin condition! Terri :)

• By Heatherbee
• Reply 3575014
• November 27, 2012 at 12:13 am
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I have pyoderma gangrenosum. I had a huge hole on my wrist and ankle. It has taken me a year to heal. I used a product called tenderwet while the wounds were draining with silver packing and mepilex coverings. The mepilex are very expensive but really worth it. I had remicade infusions for about 8 months after and take prednisone. For the pain I take Percocet. Wound changes were very painful. They were cleaned with saline first then if I could take the pain wound wash. I had a pretty severe case of this so if you have anything you'd like to talk about let me know. It does make me feel better to know someone else has this. I am very young to have gone through this so I suppose until now I've been really in denial about this being what it actually is, even though i was diagnosed, until I say picture similar to my own.

• By scooby74
• Reply 3575056
• November 27, 2012 at 12:48 am
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Yeah I been suffering from it for six years my legs look like I been shot with a 12 gauge shotgun from all the scares its the most painful thing I ever had been in the Mayo hospital. Twice for it almost lost my left leg over it. The dressing changed were horrible every four hours sucked still have a sore about size of a Quater leg been trying to heal up for two years now with the chemo its not hielping any was one high doses of pridazone there is a group on face book I belong too that just search Pyoderma gangreosum it a nice group lots of info

• By Heatherbee
• Reply 3575131
• November 27, 2012 at 1:58 am
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Oh my 6 years, that's rough after one heals how long after have you gotten a new one?

• By scooby74
• Reply 3575213
• November 27, 2012 at 4:21 am
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It depends it could be a year or 3 months my last time I had a break out had over 40 ulcers on my legs still got one that don't want to heal

• By Flove
• Reply 3584266
• November 30, 2012 at 12:12 am
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I have posted this before,yes I have pyoderma G.I Got it March 2010. It came up as a ulcer sore on right of stoma.The surgeon that performed the surgery for my stoma,caused by Crohns did a biopsy it came back that.so guess I'm one of the rare 2% too. it got big as a quarter or bigger.The wafer came loose so often,because The nurses put cream,calcium alginate,and durdurm over wound before putting wafer on.I could not stick good over that.I put hy-tape waterproof all around it.The nurses tried numerous things,course what the dr's reccomended.Home Health came for 2&1/2 years,and I finally ask them to stop,so I could leave the house.I got a private nurse to come awhile,but could not afford them long. It has got a lot better and closed up,but still there smaller,but looks bad under the skin.For the last 2 months I had a rash to break out,and got real red.The dr. thinks I got alergic to the adhesive remover,skin prep,Tape that I was using,so I cant use that anymore.It hurts when I have to change the appliance,gettin it off with out the adhesive remover,and has made the ulcer look worse.The dr,has me using some cordran Tape that has steroids in it,over the rash,and colobesol foam under that.then the wafer.The rash is some better.I am taking Humira shots ever other week,and metrotraxate 10 mg.once a week.very expensive meds.The shots are 1100.00 eh.Tape is 252.00 roll,and foam over 200.00 for a small aresol can.No way could I afford it if my Ins wasn't good. I had never heard of this till I got it. So sorry to hear of you,or anyone having it. Pray yours will heal soon.I'm so Thankful mine is doing good as it is.I dread so to change it. I live alone and its hard.with out Gods help I could never make it. I would like for anyone that has this to email me,it would help to talk to someone that familiar with it.my email is Mar40@att.net.
Blessings,
Faye

• By Flove
• Reply 3584289 · In reply to 3440751 by MABsprings
• November 30, 2012 at 12:27 am
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Did These injections hurt bad, The Humira shots I take really hurts for a couple minutes. wish you would email me at mar40@att.net
Blessings ,
Faye

• By P253
• Reply 3585864
• November 30, 2012 at 2:31 pm
• Report post

Jonesy

I had pyo after my second surgery this past January. My gastro Dr. sent me to my
dermatologist, who knew right away what it was and fixed me right up.

When I changed my unit, I would shower and then dry the area very dry. Then cover the
area with a piece of this tape and leave it and the unit on a couple of days if possible.

He gave an Rx for CORDRAN TAPE. It was easy to use and the pyro was gone with in the month.
You may want to talk to your Dr. about this. It may work for you also.
Good luck and Blessings for the holiday season

• By Flove
• Reply 3586225 · In reply to 3585864 by P253
• November 30, 2012 at 4:54 pm
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Jonsey,I am using the Cordran tape now,alone with the clobesol foam.It has got better,she is giving it for the rash.
It still looks bad tho.
blessings ,
Faye

• By Mare5785
• Reply 3586326
• November 30, 2012 at 5:45 pm
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My thoughts and prayers go out to each of you.. That's horrible.. I had this once.. many years ago as a teenager.. but it was on my leg... I can not fathom having it so close to the stoma.... ; (
Praying that all this expensive, new stuff will help heal the ulceration.

hugs, love, prayers..healing thoughts..
Mare

• By WyoJane
• Reply 3587013
• November 30, 2012 at 11:24 pm
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I have lived with chronic peristomal pyoderma gangrenosum for over 2 years now. Mine have been as big as the wafer all around. I know that they are very sore. I use what is called second intention treatment. Do not allow anyone to give you a steriod shot in the ulcer, with the stoma system and if you have any other immune issues it can get worse. My WOC nurse said that often a shot is given and then after everything clears up and little later another ulcer can break out where the shot was given.

I will list the supplies below I have used.

Main treatment is crushing a dexamethasone pill (5mg steriod) and sprinkle it on the ulcer area, just a little depending on the size. Then Arglese silver powder crusted with 3M no sting barrier spray followed by a second crusting made with stoma powder and 3M spray. I avoid oral steriods completely, they will not help the pyoderma, because it will just take more and more to treat it and the side effects are horrible. There is also the chance once the ulcer is healed that when your doctor starts to taper you off of oral steriods you could suffer a rebound reaction, which can be worse then the original outbreak.

If the appliance is touching the ulcer or the rest of the peristomal skin is really sensitive, I would recommend Eakin or Adapt 4 inch barrier rings below the flange.

The pain is a real bear. I have three about dime sized areas right now around my stoma, they come and go on me due to Crohn's Disease, Celiac, Asthma, reactive Arthritis, and Fibromyalgia. I really think I have Complex Multiple Tissue disease which makes it real hard to go away permanently.

I have been on Humira, Remicade, and other oral steriods in the past, but I always seem to react to biologics and then the skin issues get really bad. I have not tried any tape, though I have a honey item and some stoma strips we are trying this month to see if we can get my skin to calm down. Use to take 4 - 5 months for mine to heal. But the ulcers would be really deep and very large. A quarter size clear up quicker.

Once someone has pyoderma, they can always develop another one any where on the skin where the skin is traumatized. People with IBD who have a stoma surgery can then develop this "rare" complication. I think we already had pyoderma but never an outbreak. But boy is that peristomal skin traumatized adjusting post op.

Just know that what works for one person may not work for another. I highly recommend Options under garments, because I think it protects the skin from being traumatized from weight of contents and pulling on the skin by stoma system.

Flove - Your story sounds so familiar. But I told my doctor no more Humira, my skin hates the shots.

• By Flove
• Reply 3588506 · In reply to 3585864 by P253
• December 1, 2012 at 3:12 pm
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hi 253,
I have sent a friend request,Hope you will email me at mar40@att.net.since we have the same pyoderma and using the same dressing for it.Hope you are doing good now.
Blessings,
Faye