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09-18-2012, 07:56 PM   #31
nurseamync
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Location: charlotte, North Carolina
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 [email protected].
12-02-2012, 08:11 PM   #32
rhosymynydd
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Join Date: Sep 2011
Location: Tregaron, United Kingdom
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?
12-02-2012, 11:46 PM   #33
enumeras
 
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Join Date: Dec 2012
Location: Austin, Texas
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.
__________________
Dx:
Crohns Colitis (2000)
Perianal disease (2008)
Pyoderma Gangrenosum (2009)

Meds:
Imuran (2000 - current)
LDN therapy (started 1/3/2013)

Sx:
Sub-total colectomy ileo-rectal anastamosis (2007)
01-21-2013, 12:33 AM   #34
Mariono
 
Join Date: Jan 2013
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.
08-11-2013, 11:33 PM   #35
Etanirealtor
 
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Join Date: Aug 2013
Location: Middlebury p, Connecticut
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.
08-12-2013, 10:20 AM   #36
sfmreb2
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Location: walla walla, Washington
Is the PG being treated with steroids?
08-14-2013, 11:55 PM   #37
Etanirealtor
 
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Location: Middlebury p, Connecticut
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
08-17-2013, 05:07 AM   #38
Vulpi
 
Join Date: Aug 2013
Location: Germany
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
08-17-2013, 06:36 AM   #39
Etanirealtor
 
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Join Date: Aug 2013
Location: Middlebury p, Connecticut
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
08-21-2015, 10:53 PM   #40
Charlotte 2
 
Join Date: Aug 2015
Location: Fargo area, North Dakota
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 4 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. 1 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
08-29-2015, 04:02 PM   #41
Charlotte 2
 
Join Date: Aug 2015
Location: Fargo area, North Dakota
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!)

Last edited by Charlotte 2; 09-05-2015 at 09:29 PM.
09-05-2015, 11:18 AM   #42
Tubes
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Location: State of Constant Bafflement

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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.
09-05-2015, 11:28 AM   #43
Charlotte 2
 
Join Date: Aug 2015
Location: Fargo area, North Dakota
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
09-05-2015, 01:47 PM   #44
Tubes
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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.
09-05-2015, 02:14 PM   #45
Charlotte 2
 
Join Date: Aug 2015
Location: Fargo area, North Dakota
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! "]

Last edited by Charlotte 2; 09-05-2015 at 02:31 PM.
09-05-2015, 02:40 PM   #46
Charlotte 2
 
Join Date: Aug 2015
Location: Fargo area, North Dakota
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
09-06-2015, 12:38 PM   #47
Charlotte 2
 
Join Date: Aug 2015
Location: Fargo area, North Dakota
.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 4 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. 1 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
09-06-2015, 01:01 PM   #48
Tubes
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Join Date: May 2015
Location: State of Constant Bafflement

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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.
09-06-2015, 01:56 PM   #49
Charlotte 2
 
Join Date: Aug 2015
Location: Fargo area, North Dakota
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.)
01-10-2016, 09:30 PM   #50
Thumb
 
Join Date: Jan 2016
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.
01-19-2016, 08:22 PM   #51
Tubes
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Location: State of Constant Bafflement

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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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