new here, not new to crohns, anyone with PG??

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kello82
New Member


Date Joined Nov 2009
Total Posts : 6
   Posted 11/17/2009 9:11 AM (GMT -7)   
hey everyone! im new to this forum but im very active on another crohns forum. however i am in a desperate search for info and help for Pyoderma Gangrenosuom. specifically the Peristomal variety in my case. i did have some ulcers on my legs but they seem to have taken care of themselves, my stomal ulcer is as active as EVER though.
 
i was dx with crohns about 11 years ago, i am now 19. on April 7 of this year i finally got my ileostomy and almost immediatly after i got home, the PG started growing. i kept asking again and again what the "crack" around my stoma was, but it was over a month until it was actually dx. by that time it was a mess complete with a fistula through my stoma and all.
 
SO anyone else out there with this awfulness?
 
right now im on Prograf and using some fiber dressings under my appliance, and i am about to try Protopic, the topical version of Prograf (i bet you couldnt figure THAT one out from its name huh? LOL)
im on 25mcg/hr fenty patch and still poppong 2 to 4 percs a day for breakthrough. the pain is hellish :(
 
oh and btw i DID see that you guys have other PG thread here but theres 3910 of them and i couldnt figure out which on to post on! lol sorry!
 
allright, well i would really appreciate any help and also just to know that theres other people out there with this stupid peristomal PG.
 
thanks all :)

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/17/2009 11:15 AM (GMT -7)   
Hi kello82 and welcome to Healingwell. I am so sorry to hear of your PG diagnosis. One of our mods, Lyn Howlyncat suffers with PG, so hopefully she will see your post soon and respond.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 11/17/2009 3:33 PM (GMT -7)   
HI THERE...a warm welcome to you ...yes i have suffered from pyoderma gangrenosum since i had a hysterectomy 16 yrs ago after last daughter born. Now with mine the sores go deep almost to the bone ooze puss and infection protopic did nothing for me at all i was always put on IV meds antibiotics and morphine for it as you no doubt know the pain .I would break out in lil sores on legs arms fingers literally growing by hour...my hysterectomy incision did not heal properly thus causing me to get pg ...i am happy that you got a dx it took me several docs and at least a year to get mine finally saw a specialist that took biopsy of the sore..nothing grew..as is the case with most pg ..what are your specific questions my friend i do know that the immune system plays a big part i was also on methtrexate for it ..so i do hope you will post again and lol i am wondering if all the posts were mine the ppl here really helped me thru so much during my breakouts.....crohns was dx after but it does affect a few crohnies they just dont get the proper dx please do keep posting..oh also stress and anxiety made it all the worse..not contagious..take care ..lyn

the iv vancomycin is being blamed for my being deaf now......my heart really does go out to you  really not mind chatting about this with you or anyone else with this as when i was first here at hw there was only myself and one other member with this...hw got me thru my darkest days with the caring ppl we hv here...lyn


for some reason it is becoming more prevalent with cd ers uc and that is really not a good thing imho...lyn

 

Edit:  Added pictures of Lyn's PG  :)

http://i80.photobucket.com/albums/j185/marytobias99/sores010.jpg

 
 
 
 

 

Post Edited By Moderator (stkitt) : 11/19/2009 6:25:41 AM (GMT-7)


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 11/17/2009 4:09 PM (GMT -7)   
kello82~welcome to the forum...sorry you are having issues with PG. I don't have any knowledge on it myself, but I wanted to let you know that there are a few on the Ostomies Forum that do. You can use the Forum Quick Jump to get there :-)

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 11/18/2009 8:45 AM (GMT -7)   
...Hoping you do come back n get support n input....pg is becoming more prevalent now then when i was dx..lyn
..                          Co Moderator for Crohns , Anxiety/Panic ,Alzheimers....
 
           Crohns,Pyoderma Gangrenosum ,Seizures ,Fibro ,completely Deaf ,Anxiety/Panic,Neuropathy..
 
......I COULD feel sorry for self but where would that get me....I CHOOSE  to fight n survive...
 
.                                    Donate  www.healingwell,com 
 
                                                        Lyn


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 11/18/2009 8:55 AM (GMT -7)   
Hi and welcome. I know nothing about PG but as you can see we have people here that do. Hope you get the info you need , for sure , you will get support...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 11/19/2009 6:28 AM (GMT -7)   
Hello Kello,
Please see Howlyncat's (Lyn) post from 11/17 as I have added in pictures of her sores when she had a nasty flair.
 
I wish you peace,

Kitt
 

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 11/19/2009 7:02 AM (GMT -7)   
Thanks Kitt....much appreciated.....luvs lyn
..                          Co Moderator for Crohns , Anxiety/Panic ,Alzheimers....
 
           Crohns,Pyoderma Gangrenosum ,Seizures ,Fibro ,completely Deaf ,Anxiety/Panic,Neuropathy..
 
......I COULD feel sorry for self but where would that get me....I CHOOSE  to fight n survive...
 
.                                    Donate  www.healingwell,com 
 
                                                        Lyn


sickandlucky
Regular Member


Date Joined Oct 2009
Total Posts : 253
   Posted 11/19/2009 8:37 PM (GMT -7)   
Hey, do you happen to know if erythema nodosum is at all related to PG? For instance if I have EN is it more likely that I'll experience PG?
19 y/o female, diagnosed crohns december 2008
currently taking 500 mg pentasa 4x daily


kello82
New Member


Date Joined Nov 2009
Total Posts : 6
   Posted 11/20/2009 3:38 AM (GMT -7)   
everyone, thanks SO much for the welcome :)
 
 
oh lyn cry   i feel for you hun. i cant imagine having sore all over the place. so correct me if i am wrong....you dont have PG where your hysterectomy incicision is? i guess i assumed that the worst of it would be where the cuts were made. other than that, our stories seem to be quite similar, i had the surgery, developed a peristomal PG and then they started popping up elsewhere. mostly relativelt small spots on my lower legs. now that i think of it i did have a sore on my upper arm, right above my elbow.....it didnt seem the same as pg though....but it took long to go away.
now all my other sores are dried up and scarred, and i am so gratfeul for that. just the one on my stomach is not doing well.
question: do you have any sores that are "healed" and scarred now? do they leave a DENT in your skin?? the one on my shin especially is healed ( no more pain, not open, etc) but its still purple and changes colors and theres a dent where it is that seems to get bigger. maybe its the same, but its definitly not getting better. it really is a decent chunk out of my shin.
does that always happen?
 
ill post my photo too :)
 
this is the earliest one i have, its about a month after surgery when the PPG was just dx.
 
 
 
this is the most recent, from 10/27:
 
 
 
i take a photo every time i change my appy so i have a little picture documentation of how its doing. next time i change ill post the newest one.
 
i guess im not sure what questions i have. the BIG question is how do i get it to heal! but that is everyones question, i know.
what happened when they biopsied you? i have been warned by the one other PG friend i know to NEVER ever let them cut. there is a chance it will make it 8430824 times worse by adding to the leison. *shudder* ugh. i got lucky in that my doctors agree with that and are very hesitant to cut.
 
i see you mentioned methotrex, ive been on that too, but not for PG. i have been on all crohns drugs except for cimzia. thats how i got to this point, all these drugs never calmed my inflammation and after 11 years of constant disease my colon is trash. hence the ileo, hence the PG. i know that an option for me is to reverse my ileo, i read up that 100% of patient with PPG have healed completely upon reversal of the ileo. its amazing isnt it?? but its not a very good option for me. just trading one problem back for my old ones.
what pain meds are you on?
also i notice in your siggy that you have anxiety and such? when did that come about? in the past few months my emotions have been going downhill. after a the most painful exam by my surgeon OF MY LIFE i went home and did not get out of bed for 3 days and spoke maybe 10 words. i started prozac which maybe helped a little, but since then i have started having attacks of hyperventilation whenever i am in severe pain or stressed more than i can handle. also i have hiccup attacks, very strange, but in some reading i found that theyre commonly triggered by stress. i went through some social fears for a while too and even just being at the grocery store was incredibly scary for me. that one has gotten better though. do you go though similar things?
ugh what a mess life is sometimes.
thanks for being open and tlaking to me lyn :)
 
 
hey sick and lucky! im not sure the answer to your question. i had EN as well, but it was about a year ago, long before my surgery and PG dx. all the sudden i was hit with the rash and horrible arthritis in the same day. a GP put me on celebrex which seemed to help the joints and in turn help the rash, but then i ended up in the hospy with throat ulcers soooo i dont necesarilly reccomend that option. eventually it went away and hasnt been back since.
hey i just noticed you are 19 too! cheers girl!
so are you on treatment for the en?
 
 

Post Edited (kello82) : 11/20/2009 3:42:13 AM (GMT-7)


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 11/20/2009 6:25 AM (GMT -7)   
It took forever for incision from hysterectomy to heal infection set in and yes thats when pg became part of my life.....anxiety is a friend of pg and i starte d hving it as soon my hysterectomy scar started to heal more n more ..EN IS A COUSIN OF PG......i hv scars everywhere ...u can reach me on msn or thru hw...hades yes i was depessed lol to the point of almost no return but i hv to say ppl here got me thru it.....anxiety for me played a big role in it..as i said biopsy grew nothing that was first clue to the Doctor that finally did dx me ..my heart really does go out to those with this i hv lived with it for yrs....mtx helped but not in a big wayi hope i hv answered your questions if not post away i will answer..take care ..lyn...btw i looked at your pics and yes i hv had them as bad mostly on legs and fingers ..arms  only had the one on face...thats how the sores started out looking prior to busting open



..                          Co Moderator for Crohns , Anxiety/Panic ,Alzheimers....
 
           Crohns,Pyoderma Gangrenosum ,Seizures ,Fibro ,completely Deaf ,Anxiety/Panic,Neuropathy..
 
......I COULD feel sorry for self but where would that get me....I CHOOSE  to fight n survive...
 
.                                    Donate  www.healingwell,com 
 
                                                        Lyn

Post Edited (Howlyncat) : 11/20/2009 6:35:53 AM (GMT-7)


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 11/23/2009 12:04 PM (GMT -7)   
Just wondering how you are doing and if you read last post of mine..i have had sores down to the bones and as large as yours on legs...it is definitely painful imho...take care...lyn
..                          Co Moderator for Crohns , Anxiety/Panic ,Alzheimers....
 
           Crohns,Pyoderma Gangrenosum ,Seizures ,Fibro ,completely Deaf ,Anxiety/Panic,Neuropathy..
 
......I COULD feel sorry for self but where would that get me....I CHOOSE  to fight n survive...
 
.                                    Donate  www.healingwell,com 
 
                                                        Lyn


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 11/26/2009 11:00 AM (GMT -7)   
Just checking in on you....lyn
..                          Co Moderator for Crohns , Anxiety/Panic ,Alzheimers....
 
           Crohns,Pyoderma Gangrenosum ,Seizures ,Fibro ,completely Deaf ,Anxiety/Panic,Neuropathy..
 
......I COULD feel sorry for self but where would that get me....I CHOOSE  to fight n survive...
 
.                                    Donate  www.healingwell,com 
 
                                                        Lyn

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