Is PG ever... ok?

[GirlFriday]

My lovely cousin who is hospitalised at the moment for a complete blockage (severe crohns) has just been diagnosed with PG on both her ankles. She is kind of new to this disease and doesn't really know what this means. All she said to me was 'my ankles are so sore, I can't wait till they get better.' Now from the stories I have read on here (Kello, Mike, Erin - I thought of you 3 straight away!) and resaerch I have done myself I am taking a pretty bleak view of the amount of time and effort that this is going to take from her and her doctos to even begin healing. Of course I didn't say this to her, but for me my image of PG is one of a lot of pain and heartache really, and I am so worried and sad for her.
So, am I wrong? Are there cases where people get PG and its not really that bad, or it heals really quickly and doesn't cause too many problems? Is there any way that you can have it without it impacting on you life too badly?

 

[Crohn's 35]

HI there, so sorry your cousin is going through a nightmare, blockages are my biggiest fear. I know that pain. I also had PG on my shins when I was in Mexico but it was very mild and went away. PG can get way out of hand if not dealt with, it must be treated asap. Mine wasnt painful just like a sun burn (I wasnt in the sun to pale) and itchy. Get a doctor whilst she is in the hospital to give her a topical antibiotic to treat it. Even so much as just shaving your legs can make it worse. Good luck to you and your cousin, when she is feeling better perhaps you could get her to join us.

Big hugs!

 

[tamesis]

Sorry to hear what your cousin is going through, it must be so hard to see her going through it. I don't really know much about PG, sorry, i can't help with that.

 

[imisspopcorn]

Sorry to hear about your cousin. Just be there to support her at this time. She is fortunate to have a close relative with first hand knowledge of this disease and it's many complications.

 

[GirlFriday]

Thank you guys. Jetta, you made me feel so much better! Someone who had it first hand and it cleared up reasonably quickly is exactly the bit of hope I was looking for.. Fingers crossed for my cousin, I will be there supporting her no matter what happens of course. I do feel lucky that we have each other to understand and empathise.

 

[Ashley]

What is PG?

 

[Wiles]

It is pyoderma gangrenosum, a skin disorder that some people with IBD are afflicted with.

 

[CrohnsHobo]

When I first got sick I had PG. My shins and knees were covered. Still have a huge scar on my right shin. That being said it cleared up really fast once I went to the hospital and got treatment. But 14 years later it is a scar about three inches wide and four inches long.

 

[GirlFriday]

Thank you CrohnsHobo - another bit of hope! I am so glad it cleared up quickly for you, even if it did leave you with a scar.
Wiles, thank you for answering Ashleys question - my head has been so filled with thoughts on PG for the last few days that I forgot that it might sound fairly cryptic to some people..

 

[kello82]

aw sorry to hear

ok 2 things:

-it really depends. IMO, it doesnt matter how early on you catch it or how quickly treatment is begun, etc. it just is a beast of its own and does what it pleases. we caugt the one on my stomach quite early and it has been very well cared for, but it managed to spiral out of control anyways.

-that said, i know i posted somewhere, that shortly after the PG on my stomach started, i started developing it on my legs. i had 3 spots that were bad enough that they needed attention (dime sized or so) and a bunch of other little dots that were kind of wishy washy. i got 2 injections of kenalog (steroid) into the worst sore, 1 injection into each of the other two, and they went away and have not been back since! and the other small dots have just settled down as well!
my legs are kinda gnarly, looks like i had some freakish type of pox lol, but theyre just small dot scars and they should go away.

SOOO, haha see? it just is weird and unpredictable. even on the same body (mine) the PG behaves in opposite ways. very strange.

i hope *hope* that hers will behave like my little leggies did. it was not painful (well i mean if felt like a small sore on your leg but it was no big deal), it did not take over my life, etc.

do you know how big her sores have grown yet?? and will she be getting the steroid injections? if it were me, that would be the first thing id ask for. the effect was almost immediate for me. the sores looked better the next day even, it really is amazing.
the shots may be painful though =/ thats the only downside. on my legs the injections were fine, but in my belly just kills me. it depends on how sore everything is i would guess. squeezing something really helps. i even bite stuff when im in there, ill clamp down on the fat part of my palm.

well, ok that was a bit rambly wasnt it...

give her a ton of love from me please ok? tell her shes got a PG entourage on here for her. i hope the 4 of us will all be able to kick our PG butt

you are a very sweet cousin to help her out like this btw, to research for her and worry for her. its good