everyone, thanks SO much for the welcome :)
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)