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05-01-2011, 03:44 AM   #1
Tara_26_84
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Pyoderma Gangrenosum

Hi There

I was diagnosed with Crohns almost 2 years ago,was diagnosed in october of 2009.Was coping with it pretty well, had the odd stomach pain that comes but not much else.

That was until recently when a small red blotch came up on my ankle, which I thought was a insect bite... It very quickly got bigger and turned into a bruise, it went a really dark red colour. This then started to have all sorts of puss in it.

This had happened to me 2 years ago, just before I was diagnosed with the Crohns, I went to A&E, they lanced it, squeezed all the puss out of it. I returned to my G.P showed him, however at the time my G.P did not have a clue what it was and that was that. It had taken a year and a half in total to heal, after using different medications & remedies.

So again it has happened , but this time I was admitted to hospital a few weeks ago, to which they diagnosed it as Pyoderma Gangrenosum. From the 2 experiences Ive had with them, they both came up differently. The first time I had knocked my ankle this time round it's just apparred by itself. I know have another bruise coming up on my other leg and it is so painful.

It is being treated with a course of steroids which i take orally and also steroid cream to put on the wound.

Has anyone else on here had Pyoderma and if so what is the best way to deal with the pain and the scarring of the skin...

Please help, I would be so grateful

Last edited by Tara_26_84; 05-01-2011 at 04:03 PM.
05-01-2011, 04:44 AM   #2
Dexky
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Welcome Tara! I can't help you but if you use the search feature up top, you'll find many discussions on PG. HTH, good luck!!
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05-01-2011, 10:24 AM   #3
ChefShazzy
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Hi Tara, sorry to hear of your ordeal!! I don't have any personal experience with PG, but I know there have been others here who have had to deal with it. How are your doctors treating it, do they give you anything to help with the pain? I hope you feel better real soon...
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05-01-2011, 10:36 AM   #4
Tara_26_84
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Hi, Yeah I'm getting treatment now. They have put me on a course of steroids, im currently taking 30mg and their dropping the dosage each week.
05-01-2011, 12:28 PM   #5
ameslouise
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Hi Tara and welcome!

I have never heard of Pyoderma Gangrenosum! I hope the steroids do the trick and get it taken care of.

I hope you are doing well otherwise and your Crohn's is under control.

-Amy
05-02-2011, 06:31 PM   #6
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Oh, Tara, I am so sorry you are going through this! I don't have any experience with Pyoderma Gangrenosum, but I wanted to tell you I hope your treatment works and gets you better soon!

As Mark suggested, you will find several threads on the topic if you use the Search feature. Here is one example:

http://www.crohnsforum.com/showthrea...ma+Gangrenosum
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05-02-2011, 07:49 PM   #7
soretum
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Hi there,

I'm undiagnosed as yet but I do have erythema nodosum and what I think my be a pyoderma forming....started out looking like a nodule but in now quite large and irregularly shaped and bloody sore! The skin over it looks quite fragile and dry so have been trying to keep it well moisturised, so far so good but it's been the same for about a month or so now....it's on my ankle.

Sorry cant help you with treatment things but wanted to say I can kind of sympathise, am so hoping this doesn't break down and create an ulcer
05-02-2011, 08:22 PM   #8
Sungirll
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Hi Tara ...

Check out what the Mayo Clinic has to say about this. The docs there are the ones who first diagnosed it in 1930. They may have some solutions for you that local, less experienced doctors may not know about. Check out the treatment tab and talk to your local doc about options.

It could be worth a few phone calls up there to get some help. Good luck and remember your doctors work for you!

mayoclinic.org/pyoderma-gangrenosum
11-12-2011, 05:24 PM   #9
Sarah123
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I have pyoderma around my stoma. Very painful. I am getting Remicade infusions and it has really helped.
11-13-2011, 10:58 PM   #10
janellespring
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I've had Crohn's for thirteen years and have never had any skin issues until last month. I had what looked like a spider bite on the skin against my stoma. After a few days, it had tripled in size. I was admitted to the hospital and given high doses of prednisone and antibiotics to treat pyroderma gangrenosum. It was and still is very painful. You want to get a very good wound care nurse and/or dermatologist to help. I'm taking topical steroids as well as my regular meds (Humira, Pentasa, Entocort, 6mp) I'm just trying to be patient and take care of the skin even though it's in a difficult area! Good luck!
11-18-2011, 12:43 PM   #11
Sarah123
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Thank you
12-05-2011, 11:37 AM   #12
RobynK
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Hi all!
I went to the hospital in July 2011 with horrible stomach pains/diarriah/vomiting/and large swollen spots all over my lower legs. The spots were so swollen and painful that I could barely walk! Long story short, I was diagnosed this month (November 2011) with Crohns and Pyoderma Gangrenosum. They were treating me with steroids but every time they lowered my dosage the PG would start to flare. So my docs started me on 100mg of 6MP daily and I also started Remicaid. They are hoping that by surpressing my immune system that they will be able to get me off the steroids and the PG wont flare back up. So far, so good! Im getting my 3rd infusuion of Remicaid on the 19th of December and then they are going to start lowering my steroid dose (currently Im on 30mg/day). So far Ive had 2 PG flare ups. The first time I think I got to the hospital early in the game so the wounds didn't get to bad. But my second flare up I didn't want to tell my doctor because I wanted to get off my steroids, and I knew that they were going to higher my dosage and keep me on them since the PG was coming back. BAD MOVE ON MY PART! The PG came back with a vegence! By time my stubborn butt went to the hospital half my calf was a open wound and bleeding/pussing EVERYWHERE. It was so bad I was truley scared that they we're going to take my legs! I've never been so scared! But they put me on a high dose steroid IV and started me on the remicaid and here I am less than a month later and my wounds are almost healed!!! I would mention Remicaid to your doctor and see what they think. There are some downsides to Remicaid(like any other drug) but it gets the job done!
01-07-2012, 01:00 PM   #13
sfmreb2
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I had pyoderma gangrenosum about 20 years ago. A GP sent me to an Ortho Dr. They had no idea what it was. I had a large red spot, looked like it was filled with blood. 3 operations later it started to come back as very small red spots. They called a Dermatologist and she told them what it was they used steroids to get rid of it. I have had crohn's since 1972. They called it UC back then. So the moral of the story is "Little red spots can be a big problem." I'm glad yours never got to big. Have a Great Day.
01-07-2012, 02:10 PM   #14
Crohns2011
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Wow sounds scary, I have a red mark under my knee I hope it doesn't turn into one. It never goes away, I'm thinking it's dry skin and hoping it's only dry skin.
02-24-2012, 01:02 PM   #15
sarw
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got mine diagnosed 1.5 years ago after 6-7 months of going in and out of hospital at a non specialist hospital...

For me it started out with a 1x1 cm wound on the top side of my foot, i went to the doctor who tought it was an infection so she gave me some penicillin.

7-8 days went by and nothing happend, didnt get worse or better until one evening, where my leg swelled up to like 2-3 x size, and the wound grew from 1x1 cm and 2mm deep. To 7x7 cm and 5-6mm deep. That took like 12hrs and i had never seen anything like it, so needles to say, i was scared out of my mind=)

Next morning i got a hold of the doctor, who got me shipped off to the hospital, where they threated the swelling in my legs, and gave me more penicillin or something simmilar via drop, as they kept insisting it was an infection.

3 months later(without any proper pain treatment) and lots of horrible painful trips to the emergency doctor, where they insisted i keept taking penicillin, my own original doctor who had been sick for the last 3 months finally returned. He got me into a dermatologi part of the hospital, for treatment and diagnostics...

Sadly in hindsight they had little idea what they where doing, first they put me into full sleep to be able to do a full scrub down of the now 4 wounds on my right leg. I later found out that is pretty much the worst way to go around cleaning the wounds, as the trauma caused can cause the pyoderma to into overgear. At the same time we discovered that the 3months treatment of penicillin i wrongly got(was never infected) had caused me to develop allergies, wich showed its ugly face, with me beeing nearly unable to breath for a good 40min after waking up. I know now they had it all under control, but when like 6-8 nurses and 3-4 doctors are looking STRESSED and talking about stuff like a respirator, and all you can do is gasp for air and whisper spit, whenever you coughed up something unpleasent, its pretty scary=)

Anyway 2 hospital stays later they gave up on finding out what was wrong with me, and send me off to one of the specialist places in Denmark, for such things. I got scheduled for a 1-2hr exam, so i only brought stuff for such. But after 2-5minutes into the check up, the main doctor there told me, that i should not expect to get home in the next 4-5 weeks. Based on his experience it took him about 10 minutes to be 99% sure of what I had. And he immedietly put me on prednisolon, where i started out at 50 or 60mg a day.

So just about 6month, 4 attacks and A LOT of wasted time and frustrations im finally in treatment, and it worked so well... in 5 weeks my wounds where nearly gone and i was down to like 25mg of prednisolon a day. However due to the side effects i gained 25kgs, got acne terrible bad in my entire face, and was barely able to sleep(1 week i had as little as 6hrs). And thats only a few, but must note worthy side effects from the prednisolon, and dont even cover the about 10-12 other drugs i was getting. =)

3months after i got home, we swapped over to something called sandimmun instead of prednisolon, the advantage here is WAY WAY less minor side effects(such as acne, weight gain, sweats and so on, that prednisolon has). That has for me worked quite well, the only problem is that we cant quite get rid of the wounds entirely. Everytime they are nearly healed it seems like something goes wrong. The last 0.5 cm of healing seems 10x harder then the first 5-6 centimeters. Something that is quite frustrating=)

Im now hitting the 2 year mark for the start of all of it, i have 2 out of 4 wounds left, and a VIP pass to the clinic that handles me=) so everytime it goes wrong we catch it fast, react properly and stop it before the wounds manage to get really big again. I had a treatment for the acne, so thats all gone now(YAY). And on my own effort i lost 35-40 kilos, going from 115-118kilo down to into the 75-80kile range, wich i more fitting for one my size=)

I still struggle a lot with my back and knees, the long time i went undiagnosed, and in heavy pains, forced me to limp around, wich overworked wichever leg was forced to carry the xtra wieght, and the bad posture you have when walking like that caused my back to go bad also. Weight loss and now regular weight training is very slowly helping that tough.

So fare we havent found the underlying illness(such as crohns) that often cause it, and thats despite having had x-rays, ultra sound, many 100s of blood and urine samples taken, also the one where they poke a needle in your back for a sample from the spine or that area atleast. Also had the one where you get a camera up, well where the sun dont shine. Everything comes back negative or at most could be, but most likely aint ansewers. At the moment im waiting for a test result from the one where you swalling a tiny camera that checks your small intestines. So lets see.

More specifically to the OP, my pyoderma has also been very painful, random but painful, i could have 12hrs with 0 pain and then it would go off the charts... where it hurts like mental for 5seconds and then not at all for 5 seconds... was so bad it could make my leg cramp up at times. After seeing the specialists, i was put on 30mg of depo morfine(long working), and up to 30mg of fast working morfine i could take as needed. Both in 3x10 mg tablets. That was able to take the egde of it, but the key is really intensive wound care... We use something called Emla(atleast in Denmark) wich is a white creme that numbs the area its applied too locally, allowing the home nurse to actually remove all the stuff that aint supposed to be there.

Over 75% of my pain goes away the second we get: The attack knocked down and the wound cleaned up.

During the attacks I found that if i was able to apply pressure with the back of my other foot at just the right places, i could sometimes subdue the pain quite a lot, atleast short term. Also if it was really bad i would sit up and sleep, because for some reason, going from sitting up to laying down, makes something happend in your foot that hurts like ****.

If you like me also have a lot of problems with your foot/feet swelling up due to water getting trapped in your legs, getting rid of that with compressions should help also. I have compression binds or compression socks on every minute of the day im awake.

In the early phase where i didnt have pain killers or any small tricks to try, my only 3 solutions was: A: distraction B: lay crying in my bed C: plain and simple alcohol. Cant recommend 3 tough, but i did use it on rare ocassions.

anyway i think i just made a pretty bad wall of text, and as im not native in english it might be xtra messy, so ill stop here and if you need me to retype something more clearly or have questions ill continue there=)
02-24-2012, 03:35 PM   #16
Sarah123
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My pyoderma is on each side of stoma. Remicade has helped a lot. I also used a cream called
Protopic. It helped too. It is a prescription.
I have a new scary thing happening. Right next to the stoma is a draining fistula coming through the skin. It is painful. I have appt. March 6at mayo clinic so hope they can give me hope about all this.
02-24-2012, 03:37 PM   #17
Sarah123
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Has anyone experienced an abdominal fistula?
02-24-2012, 04:01 PM   #18
sarw
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not here, but google makes it sound scary=/
02-24-2012, 10:05 PM   #19
Sarah123
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Yes it does.
05-10-2012, 10:56 PM   #20
slaaneshrobw
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Im not really sure who to talk to right now, I found this today may 10th, because, I have the horrible sores on my face, they come from when I sleep, if I sleep on my sides my sideburns and chin area have really bad sores from ingrown hairs as being a man very corse hairs, but If i sleep on my back my elostomy wont last as long, I cant take oral steriods because I had a J pouch sergery and there was a microleak in the pouch they created out of my Small I so I use steroid creme, on top of my knees swell up from time to time and I wont be able to walk, they tried remecade on me, when I had my flare up before my Colectomy, and It didnt work, I want to be an actor, and everytime i look in the mirror, or watch tv Im reminded that no matter what the shape of a persons face is, they have perfectly cleared skin, I want to get into stunt work, but my ileostomy is preventing that, im only 25, and I fear for what I will look like in 20 years, from what i read in young people im 1 in 3million, to be diagnosed with Pyroderma Gangrenosum, I just dont know what to do right now. all the problems I have contradict everything I want to do with my life, and to all those who post and dont have Pyroderma Gangrenosum, Dont even bother to post a reply to this, because there is no way, you could understand, if this seems mean, sorry, super bummed out right now and I feel like yelling at someone
05-11-2012, 08:15 AM   #21
Sarah123
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Hmmm....I am not a dr but have never heard of pyoderma on face. Who diagnosed it? Pyo usually affects legs, ankles or peristomal area if you have a colostomy or ileostomy. My pyo was around stoma. It is totally healed, due, I feel, to Remicade.
Are you sure you have pyo?
05-11-2012, 08:22 AM   #22
slaaneshrobw
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yes i have been diagnosed with pyrodermaganrenosum, these are huge deep puss filled sores they get really dark purple and hurt like a bitch like pinching, its because of ingrown hairs usually but the pyroderma amplifies it 100 fold, i am 100 sure its pyroderma. cause I had the same thing under the back of my thighs and bum area, all hurt alot and get them on my upperneck huge lumpy things that fill up with p*** but my stoma area is fine and I have had something similar to a fistula but it was cause by a drainage tube that they put in that slowly came out and it didnt heal propperly when it came out, I wish the best for you and the person who has the fistual next to their stoma
05-11-2012, 09:48 AM   #23
Sarah123
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I used a cream called protopic that helped. It is by prescription only. I hope you get relief soon. All of this really eats away at our self confidence, doesn't it? You are not alone in this!
05-11-2012, 01:27 PM   #24
sarw
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even without the medicine i now get, i did have periods where my wounds would just heal up on their own... and the key was ALLWAYS wound care...

And then the cream they used for my wounds to try and stop activety was Betnovat 0.1% creme... worked well for me.

On a side note, im also 25 slaaneshrobw so can relate to what your saying, had this since i was 23, and now 2 years later, for the first time I dont have to wear bandages and for the time beeing atleast dont have any wounds =) Might even not have to go visit the nurse every week soon yay! =)

Everything gets put on standby, and just kinda wait for stuff to gets better, and for me, there was 3 times i tought i was nearly there, and then i a week later it was pretty much worse then ever.

But now hopefully im just about done with most of the waiting game now, and even then, i still struggle with some stomach issues and back pains, as a result from all this.

And the medicine i get also means i catch colds and shit constantly=)

But fingers crossed, slow and steady things should start to go better and better for you also, just gotta hang in there and stay in as good a shape as you can while getting through this.
05-12-2012, 11:14 PM   #25
KEITH OHOH
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I've had PG since 10/08 on both legs. Go to wound center twice/wk for Coban2 compression wraps with protropic and silicone mesh on wound and Floucinonide to erythema(redness and swelling around wound) take 10mg predisone/day and Humira shots every other week. Also go to Mayo Clinic in Jacksonville every 3 months. They are under control but aren't closing up. I started hyperbaric oxygen treatments but my insurance stopped it after they had orginally approved me. Go back to Mayo May 18 to see if we can do something else. My pain isn't to bad right now, have been out of work for last month but the pain has been really really BAD!!! I have tried cyclosporine, Remicade, high doses of predisone(have gained 30 pounds because of steroids),also tried Hydrofera Blue. I've had all kind of blood work done, circulatory tests on my legs, colonoscopy(I have UC)I have 3 wounds, really BIG one on left lower leg, small one on left interior ankle(hurts the most) and wound on right lower leg. Good luck, if you or anybody know any more treatments...please post...I'm ready to get back in the shower...tired of sink baths..............Keith
05-12-2012, 11:31 PM   #26
slaaneshrobw
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Thanks all, at least right now I dont get colds or flues, like once a year or so, but im not taking any oral steroids at the moment, I forgot to mention with the micro leak in the J pouch there was an internal absess that need to heal on its own and that is why the dr wont put me on oral steroids yet. and I cant get my final surgery to loose the ileostomy until the absess is healed so its pretty much a waiting game, ive met people to network with that do stunts for tv and film and his wife is a makeup artist teacher my gf is a makeup artist and is currently taking hair programm for tv and film so it all kinda is looking forward, I feel much better today, thanks both of you I did have the sores on the back of my thighs and they hurt like a motherfucker, whatever so dont ever let people touch them, all the dr that are residents and students dont understand how painful it is when they touch em, i wish the best for you all
05-13-2012, 10:51 AM   #27
sarw
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slaaneshrobw for better wound care, you can use a local anesthetic...

Its a white creme called Emla, we used it with great succes on me...

It does hurt like a bitch to get put in for about 3-5 min, but its pain you can scream your way through, after that it goes kinda nothing... then after having it applied for like 20-30 min they have a good 10-15min they can work on the wound where you cant feel anything...(unless they manage to scrape too deep, and goes where the tranq aint working haha) then you just gotta make sure your next round of painkillers kicks in like 20 min after that...

Before we used this, they could barely even look at my wounds, and not do any wound care at all, because of how painful it was. Not that this dont hurt either, but they can get in there nad get some work done.
06-09-2012, 02:08 PM   #28
incognito
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I have had PG for the last 19 years. I had it for 15 years before I was diagnosed with Crohn's disease. My legs do the same thing - I will get a lumpy tender spot on my leg, it will swell, then turn black in the middle, then open up and drain. Usually mine take about 12 weeks to heal. For many years I would have 12+ of these on my leg at any given time and it would make it really painful to walk. Plus my legs are scarred up beyond belief. The interesting thing is that my intestines aren't really that bad. I am regular on Pentasa (1 g 3x per day) don't have any pain or anything. My colonoscopsies show some ulcers, but they are pretty well controlled with Pentasa. I will occasionally have some diarrhea if I eat something that aggravates the crohn's (yeasty breads, high fructose corn syrup, soy, etc) but that is it. However, my PG is very bad and one of the worst cases my doctors had ever seen.

I have been working a lot with my GI doc and a dermatologist, and this is what we have done that has basically made my PG almost disappear. First, we found that when I exercise a lot, do stairs, and such my legs swell, so they gave me handicapped parking to limit my walking. I also starting taking a lot of folic acid (prenatal vitamins) and I am on Pentasa. When I feel a spot starting to swell on my leg, I put clobetasol (steroid cream) on a bandaid and cover it and keep that on the spot until the swelling subsides. I also have an prescription of Tylenol 3 for the pain when I need it. But this treatment has really helped my legs almost heal completely.

I hope you are able to find something to control the PG. It really is so horrible!

G
06-09-2012, 11:48 PM   #29
Richard414
 
Join Date: Nov 2011
Location: Finger Lakes area of New York St.
incognito...Your treating PG without prednisone? That's the only thing that helps my PG. Initially my GP had no idea what it was and treated with antibiotics because it appeared infected (it was not). The antibiotics did nothing. I see a Rheumatologist and Dermatologist. The Derm. recently started me on Protopic ointment which is helping heal the sores so I can reduce the pred.
Here is a link to a Facebook page for those with PG:
http://www.facebook.com/pages/Pyoder...34569293310640
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UC first diagnosed age 26
Polymyalgia Rheumatica age 52
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Pyoderma Gangrenosum age 65
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06-09-2012, 11:53 PM   #30
incognito
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Yes, I am treating my PG without prednisone. However, the clobetisol is a really strong steroid cream that I rub right onto the sores (before they ulcerate) and so it is more potent than the systemic prednisone. When you feel a sore come on (the warm painful lump that is pinkish) start putting clobetisol on it - a pea-sized amount under a bandaid. I have had great results and now only have maybe 1 out of 15 or so actually progress and ulcerate. I just am very diligent looking at my legs every day. The downside to clobetisol is that it can thin the skin if you keep saturating it for more than 2 weeks, but I have never needed to use it more than 2 weeks. Using this method I went from having about 12 open sores on my legs at any given time to having none for months at a time.
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