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11-03-2010, 11:36 PM   #1
Waif
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pyoderma gangrenosum

hi everybody,

im 24, was diagnosed with crohns when i was 9 and eventually had to get a temp ileostomy which was reversed at 16. then last november (just relized that was a year ago) i found a dark spot on my shin which was tender and it was originally thought to be a bug bite. it was lanced and i was given an antibiotic but never got better, only continued to get worse. i eventually found out it was pyoderma ganrenosum, which is a symptom of crohns. my dr wanted to put me on remicaid, but right before i went on it i found out i had hogkins lympoma. so last april i started chemo treatments for that and it caused complications with the crohns so once again had to get an ileostomy. this one may be permanent, i dont know yet. but the chemo also seemed to make the pyo. gang. worse as well. i now have a 3" by 2" patch of bright red and scaley skin irritation on my leg. i was put on steriods as a possible treatment but it didnt help. im now all finished with the cancer treatments by the way (yay!) but i just noticed a similar tiny black spot surrounded by tender inflammation on my hand. at first i thought it was a pimple or irritated pore on my hand but it hasnt gone away and im starting to worry it might be pyo. gang. starting up on my hand! ive lanced it myself but hardly any drainage comes out.

since hodgkins lymphoma effects the immune system it's uncertain what treatments are available to me to treat crohns b/c they usually all involve suppressing the immune system. what i'm mostly wondering is does anyone else have any experience with pyo. gang. ? does it ever go away?

Lea
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dx crohns age 9, temp ileostomy 13, reversal 16, dx hodgkin lymphoma last april, ileostomy last june, recovering from cancer tx, trying to find working tx for crohns
11-04-2010, 03:55 AM   #2
DustyKat
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Hi Lea and

Oh my, you have had so much to deal with at such a young age. Here are a couple of links that you may be interested in. The first one is another introductory thread with a number of links within it to PG. The second is a link to the Stoma Subforum..............................

http://www.crohnsforum.com/showthrea...ma+gangrenosum

http://www.crohnsforum.com/forumdisplay.php?f=46

I hope you stick around 'cause we would love to have you here and there are loads of members around your age as well! Please keep us posted on how you getting on and I hope more than anything you can find the answers you need. Good luck and welcome aboard!

Take care hun,
Dusty
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11-04-2010, 04:30 AM   #3
Dexky
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Lea, welcome!! There's very little I could say beyond good luck!! I hope you can get some help for your crohns that won't exacerbate your other problems. Are you on any meds for crohns at all now? I'm sure if you look through the links that Dusty gave, you will find user Kello82. She's been through the mill with crohns and PG!! Hope to see you around!!
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11-04-2010, 07:43 AM   #4
katiesue1506
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Hi there. There used to be a member here named Mike and his wife Kimberlie. Mike has been battling PG for at least 3 years now (if not longer). I know the biggest no-no with PG is lancing/biopsying/cutting into the wound. You are mostly supposed to leave it alone and make sure the amount of trauma given to it is minimal.

I also know Mike used Hyperbaric Oxygen Treatment to help his PG, and it really helped, but ultimately the only way to fix the PG is to heal your insides and fix your internal Crohn's problems. I'm sure you know that the PG is basically just Crohn's manifesting itself on the skin and so its very much like having an ulceration on the outside instead of in your intestines.

There is some kind of cream out there that Kello uses... but I can't remember the name. Anyways, look into those threads linked above and see what you find out.
11-04-2010, 10:06 AM   #5
TMos
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Lea, welcome aboard. You're not catching too many breaks, huh? I bet you're one of the toughest people you know.

I don't know anything about PG but I know there are members here that have dealt with it.

Good luck!
11-04-2010, 10:57 AM   #6
Sue-2009
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Good Luck with PG!!! Sorry to hear of your struggles. There is Kello here that has some of the same issues..She will hopefully be here shortly...Stay strong...Sue
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11-04-2010, 01:11 PM   #7
Dallies
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Hiya Waif

I am sure there is member called Kim whose husband is Mike with this. Her user name is
'pyoderma gangrenosum.'


Welcome to the forum.

xxxxxxxxxxxxxxxx
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Dallies xxxx Parent of a 21 year old daughter diagnosed with Crohn's Disease in June 2010

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Surgery:hemicolectomy June 2010
11-04-2010, 03:36 PM   #8
Astra
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Hiya Lea

I'm sorry I can't help with this, but a big welcome to the forum, hope you find the answers you need right here with us.
lotsa luv
Joan xxx
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NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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11-04-2010, 06:08 PM   #9
D Bergy
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http://www.amjmed.com/article/0002-9...011-4/abstract
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Nothing I post here is to be construed as medical advice. I am not a doctor or health professional.
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11-05-2010, 10:20 AM   #10
My Butt Hurts
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The member that Dallies mentioned is not on here anymore either.
I know that she was a member on a PG specific forum, I will ask her the name of it. You might find more people battling PG there than you will on here.

I was going to say the same thing that Katie said, basically. Don't let anyone lance it, and maybe look into oxygen therapy.
11-07-2010, 07:48 PM   #11
Inna
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Just when you think things can't get any worse.. Lymphoma after Crohn's. Maybe it was caused by drugs? Maybe from now on things will only be better. I wish you great health!
11-08-2010, 08:36 AM   #12
Waif
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i think i have a good update, i dont want to speak too soon but so far it looks like the thing on my hand was most likely an infected pore, yesterday while i was taking a shower it opened up and the infection came oozing out. it feels much better and seems to be healing. since im just barely out of chemo im still prone to alot infections, my skin esspecially, so im not that surprised but it scared the shit out of me. my doc gave me anti-biotics and said if they dont work to start prednisone. i hate being on steroids, hoping to avoid it at (almost) all costs. still, wish me luck and thankyou so much for all your well wishes.

the PG on my leg is at a stand still, it's very superficial (close to the surface) which is good. once i get my crohns under control i dont think it will take that long to get under control, but im not sure how to fix the crohns... working on it

i definatly will check out that fellow member dealing w/ PG.

Last edited by Waif; 11-08-2010 at 08:39 AM.
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