# Pyoderma Gangrenosum



## Tara_26_84

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


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## Dexky

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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## ChefShazzy

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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## Tara_26_84

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.


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## ameslouise

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


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## xJillx

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/showthread.php?t=13152&highlight=Pyoderma+Gangrenosum


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## soretum

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


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## Sungirll

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


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## Sarah123

*Pyoderma*

I have pyoderma around my stoma.  Very painful.  I am getting Remicade infusions and it has really helped.


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## janellespring

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!


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## Sarah123

Thank you


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## RobynK

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!


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## sfmreb2

*pyoderma gangrenosum*

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.


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## Crohns2011

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.


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## sarw

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=)


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## Sarah123

*Pyo*

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.


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## Sarah123

*Help*

Has anyone experienced an abdominal fistula?


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## sarw

not here, but google makes it sound scary=/


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## Sarah123

Yes it does.


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## slaaneshrobw

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


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## Sarah123

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?


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## slaaneshrobw

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


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## Sarah123

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!


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## sarw

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.


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## KEITH OHOH

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


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## slaaneshrobw

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


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## sarw

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.


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## incognito

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


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## Richard414

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/Pyoderma-Gangrenosum/134569293310640


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## incognito

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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## nurseamync

Sarah123  --- if you are still around i would love to talk. I have the same issues with my stoma area. No one I know understands what i have gone thru and continue to go thru. My email is nurseamync@hotmail.com.


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## rhosymynydd

*pyoderma*

Why is it that so many hospitals when presented with a case of pyoderma gangyrosa do not diagnose it as Crohn's I am convinced that it is one of the first signs of the onset in many cases yet the doctors look puzzeled keep you in for a few days etc It was not until I had had an ostomy, and a biopsy of the bowel said it was categorically crohn's disease. 2 years later a new doctor and hospital was reviewing all my notes for once back to 2004 when I had PG ist stoma in 2007 and then a renewed stoma in 2010. He found clear indications in the notes of Crohns as far back as 2004 - and there was me thinking I was a hypocrondriac for 3 years until they had to do an emergency bowel removal as it was about to explode. My doc wrote to all my previous consultants asking why they had missed clear signs and not one had the decency to respond. It may him even more mad and I know he had a conversation with one of them that took him down a peg or two. But my ostomy could possibly have been avoided and how many more out there are in the same situation. Its no good crying over spilt milk but the more I hear of cases of PG and not associated with crohn's does make me mad. Surely qualifed gastroenertologists should be on the look out for this?? anyone else had this undiagnosed?


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## enumeras

It starts out looking like Erythema Nodosum so mine was initially overlooked.  When it became an open sore, my GI saw it and told me that I needed to see a dermatologist without telling me what he thought it was.  He didn't make it seem like it was ABSOLUTELY urgent.  Within 2 days I was in the ER and my GI saw me.  He said, "yeah that's definitely PG".  I asked him straight up why he didnt say anything to me about this 2 days earlier.  He just said, "well I'm not a dermatologist and I didn't want to give an incorrect diagnosis" which I can understand, but at the same time, I was still pissed that he didn't tell me his assessment which could have pushed me into the dermatologist office sooner.  It is a manifestation of Crohn's but it's not in the GI specialty.  We need to educate ourselves on all aspects of Crohn's and which fields they include.


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## Mariono

Hi,
My husband suffered with PG on his face for almost 50 years.  It all started when he had an operation at age 17 to repair his bowel which was damaged playing rugby which ultimately resulted in IBS. He has been treated with many drugs including huge doses of Prednisone which he took for years on end with out ever being totally cured. In 1999 he was completely cured using Thalidomide. Unfortunately he developed cancer in his right cheek which had to be surgically removed and the PG flared again on the left side of his face.  In 2009 after once again struggling with all the normal treatments for PG his dermatologist arranged for him to start another course of Thalidomide.  After 8 months he was once again completely cured and is still happily that way today.  It has been proven over the years that in his case any surgical procedure triggers his PG.
Hope someone else will be able to benefit from the knowledge shared of his cured.
God Bless.


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## Etanirealtor

Well this has not been brought up in a while but I was just diagnosed with PG from my rheumatologist. It was weird. I was having severe pain in my foot I'd say 3-4 nights a week when I slept woke me straight up out of bed foot was swollen nothing there just figured it was my inflammation from my crohns. Then I went on a college tour with my daughter (nearly killed me) and we went into a little pub to have lunch and I looked down at my feet and they were swollen and had 3 red marks almost purple my concern was a blood clot. Then a couple days later it showed up on my other foot. About a week later they blistered and eventually ruptured. Now it's been about a month marks are still there no deep ulcers I will still get pain, but my next question is about my stoma. 
I have some severe skin issues with my stoma right now. The skin is always weeping making it almost impossible for an appliance to stay on. Could it be PG? Just when. I think ik all about this horrid disease and its side effects I learn something new. I'm curious to see if anyone can describe the PG around stoma, and if anyone has it on foot or leg that have not become ulcers... Will I maybe get lucky and not have to deal with ulcers? Is it possible. Was on remicade for years, started humira 1 week ago because nothing was changing for me on remicade.


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## sfmreb2

Is the PG being treated with steroids?


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## Etanirealtor

No I guess because it hasn't gotten that bad. Plus I had just been on a taper round for my meneires (sp?) just humira. Just started 1.5 weeks ago


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## Vulpi

17 years ago I suffered from pyoderma gangeenosum. The bruises went worse and worse and for about 9 months I had open wounds. There are still scars.
Since then I know what to do when a tiny red dot appears on a leg: immediately I use a salve with high percentage cortisone. Twice a day I apply very much and to make sure it won't wipe off because of cothes I put on band-aid. After a few days it disappears. I don't need additional oral steroids. This works now for almost 17 years.
Meanwhile I can relatively clearly distinguish simple insect bites and the MC associated erythema nodosum which becomes a pyoderma gangrenosum if you don't treat it immediately.
And even if I treat an insect bite like this it doesn't matter much because it doesn't make it worse and rather heals it faster. 

Gesendet von meinem GT-N7000 mit Tapatalk 2


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## Etanirealtor

Mine is in the foot which made my gp not realize what it was at first dermatologist was a quack I knew it wasn't from a plant I am not outdoorsy. Would you wake up in severe pain from it even before bruises arrived?  I get this pain in my foot that is so different then most of my pain that I normally have. I put the cortisone on last night because it started get that pain I had lots of swelling and I just looked it appears I have a new bruise coming out. Thank you for sharing your experience. All the best to you ~ Erin


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## Charlotte 2

incognito said:


> 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.


.Clobetisol.... is strong steroid! My prescription  was for the clear liquid, burned like  the devil with  each application.'06 pD scalp & upper  back.  CRAPOLA!  For 4½ wks I've  gotten one % Right shin, 3 n left shin I have  Appt. with int  MED intern  & boy-o-boy I'm  ready  I'll  first tell Dr WTH these ugly pus filed sores are. You can  see lower leg skin shrinking after cpl wks of swollen(edema) legs. I'm  MAKING  myself stay off feet & lay on couch. If up & about the edema is worse.   The pain caused by these buggers will make me cry.  I do believe mine arv  due to a very high stressful time. 1½ mos after hubby's  emer surgery for 5 heart stents!   '06 Similar high stressful period.   Drats!!!!! 
 Good luck  with their  Going Away  FOREVER!   Peace & Respect


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## Charlotte 2

incognito said:


> 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.


...!!! I'm  treating the 4 Ph ugly, painful  sores with Clobetasol 0.05% SOLUTION [clear liq that I can let drip onto ea one]…  I QUIVER at thought of applying  a cream(hiding under  the bed!). RX same solution '06, for my  PG oddly...'06 they were  located upper on back n scalp. They're  drying up, cpl may "weep" urine-colored fluid, I might feel oozing, or my sock will be Tad wet. Fluid must be quite evil 'cuz skin it lands on appears a different "texture"! Really tough, & kinda scaly "!   Its about time these One of several other conditions " termed =
"External  Manifestations" as  related to (mine- Crohn's Disease), 1st Dx after first  of two resections of Terminal  ileum.('77 &'86) .  '73 "Dx appendicitis --- Correct==> sh have  been Dx CD", Twas a typical  Dx "back in the early days!"as appendicitis"! 
   Please pass on this important possible  culprit  after CD resection,dependent  on area removed!!!  .... OF NOTE- as result of the  area of my bowel resections(both we're in same area) This same area  IS WHERE VIT B12 Is absorded...I practically  had to beg my GI  to "Test  me for B12 deficiency"! ...Yup!!! after the  special testing =Schilling  Test" was done, Bingo!    That did confirm  Dx Vit B12  def. Since 1988 I do self administer  Vit B12 every 3-4 weeks, in  upper thigh,alt sides!.     Dr kept saying to me "you didn't have  that much removed'!" Jesesh!  
... My reply to my GI,"Dr. it's not How much was  removed "..  "Its What area was removed"! ((PS: I'm  also on folic acid, 1 tab, every  other day" along with B12 nj.)))
   How I learned about the B12 ef, was thru ourlocal monthly  Crohn's & Colitis support Gp, I  attended monthly.  This support gp was a huge benefit.  (1980-1990's.).
  We had no  Google back then!  Support group was aakin to this  helpful members website. 
  And look  how we're  assisting each other.  Learn your conditions, get educated, share what you  learn.Please do your  own research, we get only  one body.
, Thank  you.   Hugs
  Peace & Respect
(Please excuse any  goofy or odd typos  by touch pad, Not by me!)


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## Tubes

I've been dealing with pg since late 2013 with a rather large wound on my gut opposite side of my bag & 2 waist level just below where the bag is went to multiple doctors & it got no better,after about 10 months I found a ostomy nurse/wound care specialist and she put me on a steroid gel & aquacel routine and I saw a rapid healing rate but about 2 months in it stopped healing completely.the 1st few months of this year i kept breaking out with new sores and in May they put me on a new steroid and by mid June it was pretty much healed except for 1 pea sized spot on my stomach.In early July I woke up in a lot of pain and that 1 pea sized spot that was almost completely healing was now golf ball sized,the next day it baseball sized I had a regularly scheduled appointment 2 days later my doctor thought I would need injections but decided to use a cream & a gel and it seems to be getting better but I'm not a fan of the pain,itching & burning.


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## Charlotte 2

Tubes said:


> I've been dealing with pg since late 2013 with a rather large wound on my gut opposite side of my bag & 2 waist level just below where the bag is went to multiple doctors & it got no better,after about 10 months I found a ostomy nurse/wound care specialist and she put me on a steroid gel & aquacel routine and I saw a rapid healing rate but about 2 months in it stopped healing completely.the 1st few months of this year i kept breaking out with new sores and in May they put me on a new steroid and by mid June it was pretty much healed except for 1 pea sized spot on my stomach.In early July I woke up in a lot of pain and that 1 pea sized spot that was almost completely healing was now golf ball sized,the next day it baseball sized I had a regularly scheduled appointment 2 days later my doctor thought I would need injections but decided to use a cream & a gel and it seems to be getting better but I'm not a fan of the pain,itching & burning.


Damn!  I agree 100%+   They're  an ugly n mysterious problem that is not the same for each victim! 
 I've had Crohn's.Disease  since '73. 2 resections  both between lg & sm bowel.
   I've got PD lesions 3 n left shun & one on rt shin. I tried home care, ointment  n band aid.  Uncover  to let try  dry out. Uncontrollably  painful I Finally was seen int  med..   
I knew to req a RX clear liq solution  --"CLOBETISOL" = Lotion  solution, NOT A CREAM!  The drops burn as soaked in.  Lv PD uncovered,  WOWEEEEE!  They're all dried up, not oozing  pee colored  liq down  my legs! Not over yet, their painful  lightening  bolt strikes of pain n ultra sensitive to lightest  touch of entire legs, knees to feet. Last fight  was '06upper back! I've got ugly scars 'cuz  of the ferocious  itching. 
  good  luck... tnx for sharing  As it's how we each can better  learn and exchange our experiences. 
   Peace & Respect


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## Tubes

Charlotte 2 said:


> Damn!  I agree 100%+   They're  an ugly n mysterious problem that is not the same for each victim!
> I've had Crohn's.Disease  since '73. 2 resections  both between lg & sm bowel.
> I've got PD lesions 3 n left shun & one on rt shin. I tried home care, ointment  n band aid.  Uncover  to let try  dry out. Uncontrollably  painful I Finally was seen int  med..
> I knew to req a RX clear liq solution  --"CLOBETISOL" = Lotion  solution, NOT A CREAM!  The drops burn as soaked in.  Lv PD uncovered,  WOWEEEEE!  They're all dried up, not oozing  pee colored  liq down  my legs! Not over yet, their painful  lightening  bolt strikes of pain n ultra sensitive to lightest  touch of entire legs, knees to feet. Last fight  was '06upper back! I've got ugly scars 'cuz  of the ferocious  itching.
> good  luck... tnx for sharing  As it's how we each can better  learn and exchange our experiences.
> Peace & Respect


I got a question for you how is your scarring?because for me the 2 wounds that healed at my waist level about a year ago are still severely bruised.


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## Charlotte 2

Tubes said:


> I got a question for you how is your scarring?because for me the 2 wounds that healed at my waist level about a year ago are still severely bruised.


Past years-  PG on the front area of shins,scars  pretty small. less than quarter  inch, couple  are no deeper than 1/16-1/8" deep.  
They look like typical  scars.
  The 3,4 current PG Devils on both shins, one on each shin are the size of a American  quarter  & damn  near 1/8,1/4" in deep. The dark brown & thick scabs are nasty looking! Reminds me of dried up pepperoni...  Ugly.   Scars on my upper back from  '06 at least  25, are not very deep.Sizes like a pencil  or smaller.
   None of prev scars have discoloration  on nor near them.
   I'm  going to give my uneducated, greenhorn  possible reason  for the colors u noted.
  What IF, IF, IF... it could be, because  of their location on your body. The skin is sorta different in texture & tone(aka: resiliency )  from our  shins or arms.
  If only I had a Magic Wand...
 I would- 
  "Poof it in our control --
that PG  gets CURED  by our 
'THINKING' them GONE- FOREVER" 
   ...We all can dream!...    I've taken pics of my shins as each changed, camera dates each too. I need to take pic of my current dried up PG.One thing I watch  out for regarding  these PG & scab...Do my utmost  best to NOT touch nor  graze them to cause the scabs to rip off!!!!! my "sores" as is natural for loving li'l  doggy to do.
    I forgot,  the horrible,  burning pains from both knees to feet is attention  getting! extreme burning sensations. I already have neuropathy, These pains from PG feel stringers & deeper.(hope this description helps out.)  I wanna wear shorts so bad ...BUT,for a few days  I'm doggy sitting a Bichon-Friese,  he can smell them thru my slacks! I sure don't want him licking them!
   Thanks again for sharing,exchanging  our PG issues 
 ...I appreciate  your asking question too.  It's  how we learn the best way.
      Hugs from the cool  state  of ND.
[Excuse odd, head scratching typos... that are  done  by my  phone's touch pad,  NOT BY MEEEEE! "]


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## Charlotte 2

Tubes said:


> I got a question for you how is your scarring?because for me the 2 wounds that healed at my waist level about a year ago are still severely bruised.


I'll  look at my abdomen  scarring from 2 resections, 2nd surgery incision  was right on previous scar. Its not all skin-colored,   there's slight pinkish tinge along both sides of incision's  "scared tissue line" (1st 1977, 2nd 1986)both between lg & sm intestines. Tis where  Vitamin.B-12  is absorbed. '88  was tested...Schilling  test " confirmed  B12  deficiency. Any type of "oral b12 not" is not  absorbed, thus  I do my own Vit b12 inj into upper legs, alt sides,every  3-4 wks. (skinny  needle = 95% pain free inj.)
   Later-Gator


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## Charlotte 2

Charlotte 2 said:


> .Clobetisol.... is strong steroid! My prescription  was for the clear liquid, burned like  the devil with  each application.'06 pD scalp & upper  back.  CRAPOLA!  For 4½ wks I've  gotten one % Right shin, 3 n left shin I have  Appt. with int  MED intern  & boy-o-boy I'm  ready  I'll  first tell Dr WTH these ugly pus filed sores are. You can  see lower leg skin shrinking after cpl wks of swollen(edema) legs. I'm  MAKING  myself stay off feet & lay on couch. If up & about the edema is worse.   The pain caused by these buggers will make me cry.  I do believe mine arv  due to a very high stressful time. 1½ mos after hubby's  emer surgery for 5 heart stents!   '06 Similar high stressful period.   Drats!!!!!
> Good luck  with their  Going Away  FOREVER!   Peace & Respect


 
I quiver just thinking about "rubbing a "cream" onto/into a PG sore!!! 
    TIP=  TRY to get the  Clobetasol in the liquid "solution" .[it's a clear liquid]. I let one to two drops  onto each sore, depends on sz. I can see little color change as MED gets absorbed   on ea sore, this shows me if I need an extra drop. My recent use was only 9 days. (Stop it per Dr). But, one sore still no scab, I Did apply it for 2 days @  1 drop a day. This li'l bugger then scabbed over with  a lighter color scab than other 4 sores.  YUP--> WEIRD!    I TRY:  Wisdom,  Experience,  Educate self & others, MORE Patience with myself & others.  
...Important & Vital : Try,try,try to keep stressors manageable. FREQUENTLY try to remember to take Slow & Deep Breaths to help reset my Nervous  system. .
   HUGS


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## Tubes

Charlotte 2 said:


> Past years-  PG on the front area of shins,scars  pretty small. less than quarter  inch, couple  are no deeper than 1/16-1/8" deep.
> They look like typical  scars.
> The 3,4 current PG Devils on both shins, one on each shin are the size of a American  quarter  & damn  near 1/8,1/4" in deep. The dark brown & thick scabs are nasty looking! Reminds me of dried up pepperoni...  Ugly.   Scars on my upper back from  '06 at least  25, are not very deep.Sizes like a pencil  or smaller.
> None of prev scars have discoloration  on nor near them.
> I'm  going to give my uneducated, greenhorn  possible reason  for the colors u noted.
> What IF, IF, IF... it could be, because  of their location on your body. The skin is sorta different in texture & tone(aka: resiliency )  from our  shins or arms.
> If only I had a Magic Wand...
> I would-
> "Poof it in our control --
> that PG  gets CURED  by our
> 'THINKING' them GONE- FOREVER"
> ...We all can dream!...    I've taken pics of my shins as each changed, camera dates each too. I need to take pic of my current dried up PG.One thing I watch  out for regarding  these PG & scab...Do my utmost  best to NOT touch nor  graze them to cause the scabs to rip off!!!!! my "sores" as is natural for loving li'l  doggy to do.
> I forgot,  the horrible,  burning pains from both knees to feet is attention  getting! extreme burning sensations. I already have neuropathy, These pains from PG feel stringers & deeper.(hope this description helps out.)  I wanna wear shorts so bad ...BUT,for a few days  I'm doggy sitting a Bichon-Friese,  he can smell them thru my slacks! I sure don't want him licking them!
> Thanks again for sharing,exchanging  our PG issues
> ...I appreciate  your asking question too.  It's  how we learn the best way.
> Hugs from the cool  state  of ND.
> [Excuse odd, head scratching typos... that are  done  by my  phone's touch pad,  NOT BY MEEEEE! "]


Thank you for the info.
Recently I've put on some weight this time last year I was 114lbs. Today I'm 155lbs. The one drawback is now I have a gut(well for me) where the wounds  are looks like someone took an ice scoop to me due to the loss of skin.


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## Charlotte 2

Tubes said:


> Thank you for the info.
> Recently I've put on some weight this time last year I was 114lbs. Today I'm 155lbs. The one drawback is now I have a gut(well for me) where the wounds  are looks like someone took an ice scoop to me due to the loss of skin.


and I can echo that body  change(belly)For me it was as I got 60+! ...I gave me a break-- it's  HORMONAL.; -). Plus, I've read  n heard  our  belly loose it's muscle  control with time &, OK..age too. My chronic  lumbar & butt bones  pains prevent  my doing good old sit ups  as I use to.   Thus, it's not our fault we've  got a tummy. ...   Hugs
...  more... about 4 yrs ago gynecologist  stopped the estrogen  patch I was prescribed since full  hyster. (1986,and just  4 mos.after 2nd resection).  Due to all the  adhesions,scar tissue from  Crohns resection. 6-86 while they had me open for resection. Surgeon  COULD  see scar tissue + adhesions plus endometriosis. But - because I was not  prev consulted about a "possible"  hyster along  with resection (I'd been doing infertility workups for cpl yrs). RESECTION  only.
   Then I was told bout  needing full hyster.   
Never a dull,boring moment.  HANG  IN THERE !  
   Excuse my repeats.  Due to: 
 Impaired  cognition  of the working  memory. (Dang! Dx 4/2000.)


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## Thumb

I have the same issue. How are your current legs doing? I'm currently taking predisione and clobestol. I've had two try and start and wonder if it's due to me excercising. I'm going to see if the clobestol helps if I start using it righr away.


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## Tubes

Go to my Wound Care specialist next week to find out if I need more injections.Been dealing with PG since late 2013 it never seems to go away & the healing process is so slow tried many different methods of treatment.Still Not a Fan.


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