How bad can it get?

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Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 10/7/2008 10:36 PM (GMT -6)   
Going to see the surgeon again tomorrow, so he can decide on the next direction to go in. What he thinks is Pyraderma ( sp?) hasn't gotten any better.  The holes don't seem as deep, but are getting wider. The visiting nurses have told me some horror stories about this stuff. Not sure what to expect tomorrow. Not easy to keep an appliance on when it keeps bleeding.
 Yay me.
  Good thing the Sox are still playing or i'd REALLY be ticked. turn
Bagged in Aug '06
@ssless since Nov '07
" Love that dirty water...Boston you're my home"


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/7/2008 10:44 PM (GMT -6)   

Slice, I'm sorry you've had such a crappy year.  shakehead  I hope they get it under control soon.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 10/8/2008 5:05 AM (GMT -6)   
Good luck at the doctors...I hope you get a solution to stop your pain!!

Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 10/8/2008 11:52 AM (GMT -6)   
Go Red Sox! Go Dodgers!

Red Sox v. Dodgers for World Series 2008!!!!!!!!!!!!!!!!!!!!
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 10/8/2008 12:56 PM (GMT -6)   
The only thing that helped me was having my ileo moved to the other side of my abdomen. Not that that's what you wanted to hear, but it was a solution for me.

I hate the Dodgers, so looks like you and I will finally be rotting for the same team!
If at first you do not succeed, then skydiving is surely not meant for you.
 
Jo - UC, total colectomy and ileostomy on August 24, 2007. Step 2 & ileosotmy switched to left side - May 27, 2008, and take down August 8, 2008. LIFE IS GOOD.


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 10/8/2008 12:57 PM (GMT -6)   
Okay, I caught that I typed "rotting" instead of rooting", but I decided to leave it, cause I thought it was funny. Pyoderma is like rotting, so we kinda are "rotting". LOL. Or not LOL.
If at first you do not succeed, then skydiving is surely not meant for you.
 
Jo - UC, total colectomy and ileostomy on August 24, 2007. Step 2 & ileosotmy switched to left side - May 27, 2008, and take down August 8, 2008. LIFE IS GOOD.


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 10/8/2008 6:31 PM (GMT -6)   
I'm sorry....I don't remember what you said the doc has tried. Have you done Pro-topic, nasalcrom, taking oral med to treat systemically?? I hope it heals soon! I've had it twice next to my stoma and it was HELL! I have a lovely scar now, too.

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 10/8/2008 6:52 PM (GMT -6)   
Slice said...
Going to see the surgeon again tomorrow, so he can decide on the next direction to go in. What he thinks is Pyraderma ( sp?) hasn't gotten any better.  The holes don't seem as deep, but are getting wider. The visiting nurses have told me some horror stories about this stuff. Not sure what to expect tomorrow. Not easy to keep an appliance on when it keeps bleeding.
 Yay me.
  Good thing the Sox are still playing or i'd REALLY be ticked. turn

Slice-Too bad you can't use private messages on this site. I've become an expert on Pyoderma Gangernosum, since I've had it since '96. Here's a thought, if you want....create a new yahoo E-mail address and post it here  so I can E-mail you my phone number. I'd be happy to "talk you off the ledge." Caught in it's early stages, PG is easily treatable. It took 3 long and painful years for mine to be properly diagnosed. I wouldn't waste much time with your surgeon on this. I doubt he really knows anything about PG. In my case, it took a dermatologist(the second one I saw, not to mention all the other well meaning doctors I saw) to figure it out. Plus, even if he really did know anything about PG, I don't know why he's stalling to take care of it. I mean it's not like it requires any radical treatment.....just the right treatment!!!
Mike

Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 10/8/2008 8:20 PM (GMT -6)   
Yeah, my surgeon is basically getting my Gi to deal with it, so i'm not too sure how thats gonna work. Right now he said it looks like it's moving too quick, and that Remicade might be my best shot. Or some sort of steroid shots. The holes actually seem a little more shallow, but have gotten wider. I can't seem to really do much activity since it seems to bleed more when i do. Not easy wth a wafer over this stuff, like putting duct tape in open wounds. I can't see how anything topical would work, since it's getting to the point where there isn't anything to put it ON!! Ugh. I went from changing the appliance about once a week to doing it everyday. Very annoying. I can't really say my surgeon is stalling. Problem is that when it started to really show up and open the skin, it was basically the week before my surgeon was leaving for another job..IN OHIO!! So i ended up seeing the new surgeon once and he wanted to take biopsies. So i had day surgery on Sept 16 and just saw him for the follow up today. But he did mention it was somethign better handled with my GI, mainly 'cause he's wondering if there is any return of Crohns.

Thank you Mike slicedupcrohns@yahoo.com

Only problem with Sox and Dodgers is Manny gets a ring either way. NOOOOOOOOOOOOOOOO!!
Bagged in Aug '06
@ssless since Nov '07
" Love that dirty water...Boston you're my home"


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 10/9/2008 3:29 PM (GMT -6)   
Slice said...
Yeah, my surgeon is basically getting my Gi to deal with it, so i'm not too sure how thats gonna work. Right now he said it looks like it's moving too quick, and that Remicade might be my best shot. Or some sort of steroid shots. The holes actually seem a little more shallow, but have gotten wider. I can't seem to really do much activity since it seems to bleed more when i do. Not easy wth a wafer over this stuff, like putting duct tape in open wounds. I can't see how anything topical would work, since it's getting to the point where there isn't anything to put it ON!! Ugh. I went from changing the appliance about once a week to doing it everyday. Very annoying. I can't really say my surgeon is stalling. Problem is that when it started to really show up and open the skin, it was basically the week before my surgeon was leaving for another job..IN OHIO!! So i ended up seeing the new surgeon once and he wanted to take biopsies. So i had day surgery on Sept 16 and just saw him for the follow up today. But he did mention it was somethign better handled with my GI, mainly 'cause he's wondering if there is any return of Crohns.

Thank you Mike slicedupcrohns@yahoo.com

Only problem with Sox and Dodgers is Manny gets a ring either way. NOOOOOOOOOOOOOOOO!!

Slice-I sent you an E-mail. Call me whenever you'd like!
Mike
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