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Crohn's Disease Forum » Extra Intestinal Manifestations » Skin » HELP!!! what should i do here??


07-30-2012, 12:09 PM   #1
dragonfly
 
Join Date: Jul 2011
HELP!!! what should i do here??

i was dx with HS about 7 months ago...im not nearly as bad as some of the pictures i have seen online of others in this case i can completly understand them wanting to have surgery. i have had this "thing" for over 8 years now it has always been cut and drained in the office if it didnt open on its own. mine is located on the inner thigh/groin area it comes and goes but when its at its worst it hurts so bad even the pain meds dont really help it...i cannot get comfortable to sleep at night even walking hurts at times as every time i move my leg the skin kinda pulls and brings tears to my eyes. i have just met with a new dr which i like very much, he offered to have it removed along with some other "ones" down there that i didnt even know i had. he says they are not deep as it is a skin infections and told me that the biggest one (the most bothersome) will be the size of a quarter if not alittle larger and the others will be about dime size if not smaller. they will be left open to heal from the inside out...i just saw a plastic surgen last week and he said that i will not need a skin graft (thank god) so my question to any of you....has ANYONE ever had this done before???? i have 2 girls ages 3 & 5 they both will be going back to soon the end of august and i would like to have this done ASAP because i have no idea how much this will hurt or how long it will take to heal??? i have to be able to get them ready for and off to school my youngest is only in pre-school she goes for 2 hrs and 45 mins on tuesdays and thursdays. can anyone PLEASE give me some advice on what i should do or anyone whos had this done PLEASE tell me what to expect. dr did say this in no way will heal the disease the infection could come back in the same place or move at anytime. is it worth it or not is what im asking myself now??? i have dealt with this pain for many years now am i really ready to take chunks of my skin out to only have the problem return again??? HELP PLEASE!!!! thanks so much!!
07-30-2012, 06:08 PM   #2
Tenacity
Senior Member
 
Join Date: Jun 2012
Location: Houston, Texas

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Dragonfly - I'm sorry you are having to deal with this. Anti TNF meds would treat the HS as well as the Crohn's. Are you on Remicade, Humira, Cimzia?
07-30-2012, 09:24 PM   #3
dragonfly
 
Join Date: Jul 2011
i guess i did forget to mention that part!! i just came off of remicade been almost 3 months without it now...it was not helping either the crohns fistulas or HS. my new dr explained to me that remicade was never a good idea in my case anyway, he says that remicade is the most effective in people with new fistulas not ones that are years old as mine is. he was suprised as well that it did nothing for the HS either. i was well i take that back i am a smoker....i quit after my dr told me its not only bad for crohns but it is even worse for the HS so i started chantix and i did quit for 3 months but then my HS came back in FULL FORCE and when dr asked what did i do (change in anything) i told him i quit smoking he laughed and said thats crazy and dont believe that had anything to do with the flare-up but i seriously do think it did!! so i have since started smoking again (im weak i know!) in no way has my HS gotten any better....to me smoking is my relaxation for a few mintues sounds pathetic i know but im just being honest!! i did not like the remicade really at all...i did mine on fridays so i would have the weekend to recover i lost almost 15 lbs during the 9 months i was on it and man was it a rough winter for me....my oldest was in preschool at that time so she'd bring home every kind of bug that was going around i had broncthois for 3 months had to be put on an inhaler!! im very glad to be off it as im not a meds person much. i grew up taking up to 30 pills a day! ive just been told so many different things and it seems when i get hopeful they fall apart! im over feeling sorry for myself with the why mes and all that good stuff i am so very lucky and blessed to have 2 healthy beautiful daughters i just pray to god every night that i dont pass on either the crohns or the HS to either one of them. my problems started at 5 yrs old and thats the age of my oldest now id be lying if i said i dont look at her poop after she goes! she complains of belly aches and has very hard stools...i had a bellyache everyday of my life as a child so my fear comes honestly! i have come to understand that i will end up with a permanent bag i have no other choice being mis-dx i have nothing left on the inside to work with! i just wish that they could replace a j-pouch.....wouldnt that be something! im just trying to weigh my options and decide what in the world i want to do now i have 2 kids that are full of life and energry and man if i could only have 1/2 their energy id be happy!! i want to be healthy for them and be able to keep up with them...im just not sure if this is the right decision or not??? my last dr said they were too deep to remove we would be talking maybe losing the abilitly to even use my left leg and now im told that its no big deal just scoop it out and the worst will be waiting for it to heal and knowing it could come back again.........i wish i knew what to do!! but thanks so much for taking the time to read my post, i appreciate so much being able to read & talk with people who are in the same boat as i am. i was so young when i was dx i never told anyone except my best friend and family its a gross dirty thing and not too many people understand it let alone want to talk or hear about it so again thank you so much for your time!
08-02-2012, 05:54 PM   #4
Tenacity
Senior Member
 
Join Date: Jun 2012
Location: Houston, Texas

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I share your concern with regards to your daughters. It is such a blessing in life to have healthy children. Maybe when times are tough, just remind yourself of how healthy and robust they are, and it will make you feel blessed compared to others. I'm so sorry you are having to deal with the HS on top of the crohn's! As if one condition isnt enough! You probably already have had a 2nd opinion for the choice in front of you - surgery or no surgery? I would do as much research as I can - knowledge is power, and it will help you to make the right decision. Just remember at the end of the day, you cannot do more than your best, and it sounds as if that is what you have done.
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