# Hidradenitis Suppurativa?



## maloo

hi there.. just wondering if any other folks have been diagnosed with this ??

a lengthy process resulted in a hospital consultation yesterday and this rather gutting diagnosis.. it seems like crohn's the cause is unknown but research appears to link the two..

i have surgery in a couple of weeks so finger's crossed...


----------



## Mayflower537

If you search the forums, I know there is a member here who's son has this.  I believe it's his son...anyway, I don't know what forum etiquette says about stuff like that so just search for that condition.


----------



## maloo

thankyou mayflower.. appreciate that..


----------



## AmyWooden

Hi, Maloo!

My sister was diagnosed with HS about 8 years ago.  has occasional problems with it.


----------



## maloo

hi amy !!!

thankyou.. sorry to hear about your sister but i hope you don't mind me saying it's good to hear someone else has HS and only occasional problems... the doctor at the hospital, although very decent and informative, terrified me !!!! 

i have surgery coming up pretty soon so hopefully it will go away for a while at least..

thanks for your reply....


----------



## AmyWooden

Unfortunately I don't know much about HS, but can ask my sister any questions you may have about it.  I know it affects mostly her armpits, groin and breast areas. 

Good luck with your surgery!

-Amy


----------



## Silvermoon

I was diagnosed with HS on my face a few months back, but I suspect that, along with fistulas, I also have it in my groin, and I do get one spot under my armpits that comes and goes.

The (possible) disease is my groin I have been fighting for years (over 10 - if that is actually what it is, but no one will confirm it), and the one on my face for about 18 months.  There seem to be many medications that one might try before surgery - certain antibiotics, Accutane, and possibly some birth control pills (for females) - some of these are night ideal for IBD patients (ie Accutane) - but some simple googling on the internet does lead to other possible treatments that my dermatologist recommended as well.

Of course, all of this also depends on how debilitating the disease is and how advanced it is.  And yes, it does "appear" to be one of those "extra intestinal manifestions" related to IBD - wacky immune systems can apparently play havoc with all different parts of the body....

Wish you well...


----------



## maloo

silvermoon thankyou..

i've had a selection of antibiotics of which none touched the HS but all played havoc with my fairly manageable crohn's.. the choice of surgery offered a tad of possible sunlight..

i suspect like you i've had HS for a while..

reading the available info i imagine it's been sitting in my system waiting, quite literally, to come to the surface..

thanks for your well wishes, much appreciated..


----------



## maloo

p.s silvermoon..

just caught a thread with mention of you in it.. 

thankyou again for replying especially as you are clearly in the middle of tough times..

i really do wish you well xx..


----------



## dragonfly

hi maloo! i was just diagnosed with HS a few weeks ago. i was planning on starting remicade for my crohns but when i met with my GI i showed him this "new" lump/bump thing that we had thought was a crohns related fistula but he thought otherwise and now it has a new name HS!! i started flagly & cipro to clear up the infection but if that doesnt work then we will talk surgery?? my dr says that remicade also works well for helping this skin disease. what kind of surgery are you having if you dont mind me asking? i have mine (lump/bump) in my groin area right side inner thigh and it hurts! walking sitting playing with my girls has become so painful, i do have pain meds but they make me sick to my stomach on top of my other meds and if i take them before bed i am so restless! i really did not want another sugery....i just had 3 fistulas removed back in Jan and these where between my legs and dr just left them open to heal on their own, one was so deep it had to be packed! they took a total of 6 weeks and 4 days to completly close and heal...though still to this day they are rough scars and one when you touch it you can still feel a lump inside. my dr is thinking maybe them were from HS and not the crohns. but i dont understand how can it be a fistula if its not crohns? im sorry to ask you 100 questions and throw all my business at you but to be honest you are the 1st person i have found who has this as well!! please do give your opinion or thoughts and advice when you have time, i would greatly appreciate it!! i wish you well, and again thanks for your post you have no idea how much it helps me to know im not alone with this!


----------



## maloo

hi dragonfly..

the story of my HS is as follows:

in the early part of this year i developed what i thought was a boil on the inside of the top of my left leg, the swelling grew and grew and like you it was painful to walk, sit etc.. it ruptured and so much awful yuk oozed out, it was horrible but the the relief wonderful.. until another boil appeared close to the original one and what felt like a slug joining them.. little holes then appeared with a really smelly pus that would ooze out so finally i went to the walk-in centre and was prescribed anti-biotics for a week for what they diagnosed was a boil.. time passed and no healing so back to the walk-in for more anti-biotics, a double dose but again no healing, just agitation of my then settled crohns.. my third visit got me seeing my proper doctor who sent an urgent referral to the hospital and with another course of anti-biotics i waited for my appointment..

two weeks later i saw a specialist whose first question was did i have these lumps on the other side of my leg ??  yes i replied but they had not ruptured, just the slug type shape in my leg (i had mentioned this on all three previous appointments).. instantly he diagnosed HS and offered me the choice of a life time of anti-biotics or surgery.. i took the latter option because my crohns and anti-biotics simply don"t hit it off and i didn't want to run the risk of becoming unwell again..

whilst he didn't give me much to go on about the HS (in fairness i think i was in shock because i had thought it was a boil that had gone wrong) he made it very clear that the surgery he wanted to do had only a 20% chance of working so it could well come back..

i came home and searched the internet for information (this was the time i stumbled on here) and things became somewhat clearer.. 

two weeks later i had the surgery...

to say i have been in pain since is the understatement of the year and i can cope well with pain.. the surgery was higher up than i had thought but that made sense because because if the scar had healed well it would have been covered by the natural creases of your skin..

unfortunately half the wound opened courtesy of some nasty blood-clots, so i was left to secondary heal meaning that now i have a huge hole in the top of my leg just below my vagina.. not a pretty sight at all..

i am so glad that i didn't have the other side of my leg excised, the specialist had hoped if he could sort my left side out then my right would settle.. i know that if i had had the two areas done i would not have coped..

the pain has been horrendous, i was put on liquid morphine and the bruising is nasty.. as i understand the surgeon cleaned four sinuses out..

i can just about walk (more of a hobble) but driving is out of the question for the moment as is work.. as a single mum if it hadn't been for friends and family all helping there is no way i would have managed, no way at all.. even sitting was impossible so going to the toilet has closely resembled a circus act..!!

at the moment i am simply happy to be off the morphine and healing slowly, i've had the surgery so there is no point looking back and wondering if it was the right thing to do.. i can't change that.. hopefully the HS will go away on the left and then yes, the surgery will have been worth it.. if not then at least they gave it a go.. i suspect the hospital should have re-stitched me but no doubt their decision was down to unavailable bed-space..

the hole is horrible, when it has healed maybe it won't look so bad.. having said that i'm almost forty and a fairly positive person so long gone are the days when i worry about my looks, being healthy wins every time these days.. if i had been younger though i would have been devastated.. 

on a lighter note i will have to buy new underwear because bikini style knickers will be out of the question !!! 

my specialist was hugely excited to find i had crohns and i got the questions on whether i had fistulas.. 

i guess with the HS the fistulas are the slug like nodes that seem to join the abscesses.. essentially a fistula is an abnormal passageway that connects vessels so that makes sense.. when the abscess starts to drain then it is suppurative..

as for surgery only you can make your decision.. i had a hemicolectomy years ago which was less painful than the HS surgery.. if i could turn back time would i have the HS surgery ?? as it stands today yes but i am not yet healed and time will tell.. certainly if you do go ahead then absolutely make sure you have friends and family on stand-by for help.. just walking the bare minimum of steps is unbearable.. fortunately my son is amazing and i am open with him, he's eleven but it effected him in that he saw me in so much pain, i couldn't drive him to school etc but my angel-like parents had him stay at theirs for a few days..

good luck and keep in touch, i hope what i have said helps in some way ?? believe me, as much as i am sad to hear you have HS it is lovely to be able to talk with someone who understands..

much love kathi X


----------



## dragonfly

thank you so very much for explaining this all to me, in terms i can understand! thanks for being so honest and not sugar-coating it as well! my dr had removed well dug out i guess is a better word for what she did to a few of these in jan of this year and goodness sakes them took over 6 weeks to heal and finally close and that was plently painful. im sorry that you had to go through so wuch pain with your surgery. you seem like a very strong strong woman and i admire you for that! my dr wants to do surgery on the one i have on my left inner thigh right where the thigh meets with the groin this is such a horrible place, i undertsand excatly what your saying about underpanties that are comfortable, the rubbing is painful. i have 2 small children both girls my oldest is 4 my youngest is 2 and this thing could not have picked a better place to pop up...it hurts when they sit on my lap or even just to get on the floor to play with them sometimes just when i forget about it i pinch it it rubs and im instantly reminded! again thanks so much for sharing what you went through, you have no idea how much it means to me to find someone who is going through this and able to be so honest about it! thanks so very much!! good luck to you and i sure hope you are feeling better!


----------



## maloo

no problem dragonfly.. i'll keep you posted on how things are doing.. i'm hoping to get an appointment with my doctor tomorrow just to have him check how things are doing.. the wound site is as clean as i can keep it but is starting to look not great so whether i have a minor infection i'm not sure.. certainly there is yuk still coming out of the sinuses which the surgeon cleaned..

one thing i forgot to mention was how deep the surgeon may have to go.. my cut is in the same place as your problem, right where the thigh and groin meet, but the bruising goes right down to above my knee at the back of my leg.. it felt as if a vein had been pulled out !!!

one thing is very different though, prior to surgery i was feeling so washed out and exhausted.. i had presumed it was the age old crohn's problem of anaemia, i had my B12 injection which normally springs me back to life but not so and in fact. my bloods were good..

although i feel awful in that i am sore i don't feel this sense of extreme exhaustion, i don't have the shakes which i was starting to get either, nor the headaches.. all i can assume from that is that the blocked sinuses and subsequent infection was almost poisoning me.. my head feels like it is mine again which is a wonderful feeling !!!

i will keep you updated on my situation and great to be in touch !! kathi x


----------



## Lisa

ok - now this is interesting reading! A year or so ago,  I had what I thought was just a nasty pimple/boil in my groin area - right in the crease....I think I may have had a couple - lump, kind of purple-ish looking skin - I finally had enough and ended up popping/opening it - and has pus come out.  This happened while I was dealing with some skin conditions (eczema/pseudo-psoriasis) too down there.....I figured it was related to that.....

Thankfully I have not had any reoccurance, but will be keeping an eye on things!


----------



## maloo

do keep an eye on things pasobuff, unfortunately it doesn't seem to be a well recognised thing so the treatment you can get won't necessarily be correct.. this is what happened to me and meanwhile the now known HS got worse and worse.. who knows but maybe if i had had the correct antibiotic earlier then lesions wouldn't have formed ??? 

all the best..


----------



## dragonfly

hey maloo im sorry to keep bothering you but i forgot to ask a very important question! from all the research & things i have read about HS it comes in stages 1 2 & 3. i asked my dr which stage she thought i was in and gave me the answer....she doesnt go by stages per say she goes by the disease itself??? that just left me with much confusion! your dr must have thought you were into stage 3 by now and required the sugery? i have read that stage 3 of the disease ....fistulas left undiscovered undiagnosed or untreated can lead to the development of squamous cell cercinoma, a rare cancer, in the anus or other effected areas. other stage 3 chronic sequelae may also include anemia (which already comes along with crohns), multilocalised infections, amyloidosis, and arthropathy. stage 3 complications have been known to lead to death but clinical data is still uncertain.
triggering factors....obesity, tight clothing, smoking, deodorants, depilation products, shaving of the inffected area, drugs in particular oral contraceptives "the pill" and lithium, hot and humid climates.
whats your take on these just from experience???
i wouldnt say im crazy overweight...im not slim jim as i was before kids!! but im 5'4 about 150lbs and i do smoke i have for almost 15 years...that sounds so gross admiting it!! i quit during both my pregnancies and while breast feeding but i started back up again each time, and i do use birth control i have a UID now called merina which i LOVE dont have to remember anything its just there for 5 yrs! i did use to shave down there...sorry for too much info here but i want to be honest!...and i did notice that yes it does make it worse. tight clothing ive never been into so thats not so much a problem.
the only thing that helps me i have found is when i am able i love to sit in the bath with water as hot as i can possibly stand....my poor skin is a nice shade of red when i get out!...but that helps alot when the bump/lump is in full force. to be just comfortable in everyday life finding underpanties is impossible so i just lay a piece of gauze over the bump half in my panties half out and though it does hurt sometimes it feels much better than the rubbing of just the panties themsleves. my dr spoke about removing this soon but she is fearful as to how deep she will have to go...which scares me because of what you have been through!! i have read about needing skin graphs to correct these, is that really true that it could be so bad to actually have a skin graph??? i myself have taken no meds for my crohns for almost 10 yrs, well i have taken flagly and cipro for infections here and there but as for "pills" themsleves i have always said thanks but no thanks. i grew up thinking it was normal to take sometimes up to 25 pills a day and im not interested in that anymore. half the pills i was taking them came out when i went to the bathroom anyways...when i told my dr this he thought i was crazy but at the time i was still a kid and lived with my mom i showed her and she could not believe it either but she was my proof when we went back to the dr...if you think about it not having my entire large intestine i have nowhere for these pills to absorb so therefore they pretty much went right through me. not to be gross just honest....with gloves i reached into the toilet and pulled out the pill and could open it with all them little inside beads still intate!! i beleive them may have been called pentasa??? im sorry im not for sure it has been awhile. when i found out i was pregnant i was terrified...my dr said i shouldnt have kids not that i couldnt but i was 15 at that time and becoming a mother was the last thing on my mind damn i just wanted to be a kid again myself!! my OBGYN was great i had c-sections with both my girls....didnt have a choice, drs were afriad with my inside j-pouch the pressure would be too much. both pregnancies were rough my second daughter was 10.14!!! but thank God my bag adjusted and all went well. after my 2nd was when the dr wanted to talk meds again and again i said no why rock the boat?? these lump/bump things have been opened and drained many many times during them times my dr had not said they were from HS we thought it was from the crohns.  ok im going on and on now but WOW does it feel good to get this all out to someone who can relate!!! sometimes even my drs look at me as if might give alittle too much info but hey shes the one whos supossed to be making it better right???
Thanks so much!


----------



## maloo

please dragonfly don't be afraid to ask.. it's just as great for me to be able to talk and share, already you have helped me because i don't feel alone in this one so thank you..

my specialist nor my local doctor have staged my HS, this is a question that i will ask the specialist when i see him on the 8th august.. although on the surface my HS didn't look as bad as some of the pictures i have seen via google it was clearly deep.. as i said before the bruising goes a distance.. my guess is that because i had two main holes in my leg which allowed the pus to drain it didn't spread as much, luckily i just had the one slug joining the main holes.. what had started to happen was smaller, pin-prick sized holes that appeared near the main ones so clearly the yuk was needing to push its way out..

we are so similar in that like you i haven't been on medication for crohn's for ten years, i have had the odd short-lived spell on prednisolone which i have never completed.. it seems for me that since i had my son my crohn's has never quite been so bad as once it was, yes i have diarrhea daily but i can live with that.. my crohn's doctors have tried to get me onto medication but i refuse.. the side-effects have not been worth the treatment.. i have vitamin B12 injections every three months and i believe it is these that have saved me.. pain i usually manage by trying to calm myself, deep breathe etc etc.. like you i have had more pills than hot dinners.. with my crohn's the significant turning point was when i decided it had to live with me instead of me with it.. once i get my head around the HS i hope to apply the same logic..

as for smoking, shaving etc..??

i live in england so definitely not a hot climate !! tight clothes are a distant memory from my 20's but i do wear cotton leggings or tights in the winter and neither have been a problem.. i do have a pair of these skinny jeans but leggings style and they however do aggravate so now they sit in the charity shop pile.. i'm not obese (i don't know anyone with crohn's who is !!) but yes i do smoke, sometimes loads, sometimes hardly any and on this i don't worry about justifying my habit.. when i have stopped before the constipation has been unbearable and on one occasion i was admitted to hospital because my bowel was becoming impacted.. it's not a great habit and i'm preparing myself to call it a day in time for when my son goes to high school.. my quitting is for him though, i would hate him to start..

underpants have been a tricky thing to get right because sometimes the boxer-shorts style which i thought would be loose and less aggravating have turned out to be the worse.. tango briefs seems to be the best for comfort but the worse for visible panty lines so sometimes i give up and go commando !! i used to panic and think "what if i got run over by a bus?? what would the paramedics think??" but after years and years of doctors looking at my bum i worry not anymore !!

my suspicion is that i have had the HS for years, just loitering around in my system.. i have had the odd weird spot down below from time to time which i have dealt with with a clean pin and a good squeeze.. from time to time i have had lumps appear in my neck then disappear and certainly my lymph nodes around my groin stick out but that's how they have always been..

they say stress is possibly a triggering factor which to some degree i can go along with except that my life has had a number of major stresses (like anyone's) and never before has the HS surfaced.. 

the most interesting thing for me is the bit about "trauma" which can explains bodily lesions and it is this i hold responsible..

(now for grim and gritty detail, sorry..)

the night before my slugs appeared i had sex with my then boyfriend, it was rough, unwanted sex and the next day i felt a lump either side of the top of my legs which i put down to friction.. the lumps never went however, my boyfriend and i finished (hurrah !!) and by the following week the left hand side had opened into the first suspected boil.. 

i think the HS was simply laying dormant waiting for the right set of circumstances to arrive and i think because of crohn's being immunosuppressant the HS just went 'whoooosh!!'

for my surgeon to have gone so deep into my sinuses it must have been pretty gruesome and from what i understand the surgery took one and a half hours which seems like a heck of a long time..??

i do cycle alot and one could question how come from this did i never get the HS going on my trauma theory ?? when i bought my bike the shop had an offer on the most amazing comfy bike seats which seemed like a good deal so i bought one.. it's like sitting on cushions, not the usual hard seat..

i don't know whether my theory is right but it seems to fit ??

am off to the doctor's later today to have my operation site checked as it's going a bit yukky, am going to ask some HS questions so will let you know if i learn anything..

kathi x


----------



## Becca1991

I think i hav HS, for months i have had these two so called boils at the top of my inner thighs near the bum they were painful and i got sick of them so i popped them and pus and blood came out. They left purple scars and now and again they fill with blood so i pop them and once the blood is gone they leave a hole and then cover up, i have 2 main ones  one on each side and then some little ones in the same area. I am going to tell my GI doctor when i see him in Feburary 2012 but i didnt tell him earlier as of where they were its embarssing.


----------



## dragonfly

becca, please dont EVER feel embarassed!! i know its hard not too but you are not alone. you really should talk to your doctor about what is going on and if you dont like or agree with what he/she says or thinks then by all means go see a derm. HS is so hard to understand and treat because so little is known about it but if you wait too long and keep openening them on your own you could really be hurting it much worse. please do tell your dr whats going on and dont hold back the more honest you are the better he/she will be able to dx & treat. i wish you the very best of luck!!


----------



## JohnnyRottenAppleseed

Gdmn it i think i have this also. My GI doc even wondered because i get armpit and groin area abscesses. Just what i needed, another disease!!!!

man what i have does not look like google pics of HS!


----------



## RochelleRudolph

Hi,
When i was 15 i developed a boil type thing in my groin area and god knows how many years later, after many many more lumpy boil things, my GP eventually diagnosed HS.  So i have put up with it for 20 years now.  But interestingly my Crohns wasnt diagnosed until i was 24. They have both been pretty mild i suppose, in that i have only ever been on Prednisolone once (for about 18 months i think - cant remember it was so long ago) and have been in remission for 9 years or so, but think i am having a flare up now.  Just waiting to see a consultant in the next few weeks.

I have never met or talked to anyone with HS and it can be pretty miserable at times, but when i do get a boil (which is more often than not), a very hot bath is a great help and once the goo has come out, it feels so much better. I just manage to live with it. I only ever have them in my groin (top of legs).

So are HS and Crohns related??


----------



## JohnnyRottenAppleseed

Yes my GI doc said they are related but the pics of HS are nothing like what I have. How did they treat your HS and what's the difference between regular old books and HS?


----------



## mirianda

*surgary*



maloo said:


> hi there.. just wondering if any other folks have been diagnosed with this ??
> 
> a lengthy process resulted in a hospital consultation yesterday and this rather gutting diagnosis.. it seems like crohn's the cause is unknown but research appears to link the two..
> 
> i have surgery in a couple of weeks so finger's crossed...


I go to see the plastic surgeon tomorrow  im a bit nervious but what the hell ive had the legions now for 11 years and now its li8ke im sitting on a thick piece of rope all the time ,ive tried every antibiotic there is all the creams even trid fusions.Im sick of this,then to top it all off I have crohnes disease and three years ago i had 8 inches taken from my intestines.I READ ON THE NET THEY GO HAND IN HAND NOONE TOLD ME THIS.


----------



## mirianda

maloo said:


> hi amy !!!
> 
> thankyou.. sorry to hear about your sister but i hope you don't mind me saying it's good to hear someone else has HS and only occasional problems... the doctor at the hospital, although very decent and informative, terrified me !!!!
> 
> i have surgery coming up pretty soon so hopefully it will go away for a while at least..
> 
> thanks for your reply....


I hope you find relief,as I  AM SEEING A PLASTIC SURGEON TOMORROW aswell,good luck


----------



## dragonfly

i was dx with HS almost 6 months ago by my GI dr ( i have crohns as well, this was treated as a fistulsa for many many years but 6 months ago she put another name to it...HS) i questioned her about it and asked for a referal to see a derm in which she denied...after talking surgery to remove it with her which i do not want to do, i made myself an appt with a derm who specializes in HS and i met him the 1st time this past friday morning before my remicade infusion.....long story short, he says he is 99% certain this is NOT HS!!!!!!! he was very suprized that it has never been cultured and even more suprized that since i am on remicade it is not in anyway clearing up, remicade is used to treating HS and has shown great improvement while on it....not in my case...every time i have had a injection of remi within 3-5 days of getting it this lump/bump boil thing on my inner thigh has came back in full force. he says that right there should have been a red flag for my doctors to see that this was not HS, he also said that because this thing has been treated as a fistulsa opened and drained numerous times it has given it the appearance of HS because of all the scarring and inflamation. he did stress that he is only 99% sure that it is not he wants to be completly certain so i am going back to see him when this thing decides to show its strength and grow to the size of a golfball as it has the past 3 remicades. i can only hope that it is in fact a cyst...which i have had many over the years and cysts do run in my family not HS or crohns...i am the only one as far back as i can go in my family tree that has ever had either of these diseases. i only wish i would have gone with with my gut instint to get a 2nd opnion and not have waited so long. i cried i laughed...i had quite a day on friday!! what a wonderful feeling to not have to worry about passing HS on to my children, knowing that they could or their children might have crohns is heartbreaking enough. i just want to remind everyone PLEASE do get a 2nd opnion ALWAYS it could be life-changing!!! again he is not 100% but please say a prayer for me that it is not, i would appreciate it so very much!! thanks so much for taking the time to read my post!


----------



## JohnnyRottenAppleseed

I def have abscesses from the immunosuppressants. They have been quit for the most part since lowering and finally stopping 6mp.


----------



## RochelleRudolph

My HS has never been treated.  I have just gotten used to it over the years, but maybe it is only a mild case.

About 3 weeks ago though i found a pretty large lump at the crease between my leg and groin, which was hard, but not sore or red at all.  I went to my GP and she said it could be an infected cyst, so put me on strong antibiotics.  It didnt go down until i had nearly finished the course and then there was about 10% of it left.  Three weeks later, it has come up again, this time it is even bigger, very red and very tender and my thigh seems a bit puffy.  This is not like any other HS boil or cyst that i have had, so i am confused as to what it might be.  Could it be a lymph node???

On the Crohns front, i am getting really mad as i am still waiting for an appointment and it has been nearly two months now since i was referred.  But on a positive note, my bowels seem to be behaving.  I have so many other odd symptoms at the moment and i have seen my GP practically every week for the last 6 weeks i think she is fed up with me, but i am getting nowhere.  

I didnt sleep well last night as i couldnt get comfortable due to the pain from this so called cyst, but i am giving it another day or two before i ring my GP.  I have somehow lost faith in her and dont feel like she is really investigating what is going on.  My main worrying symptom is my loss of weight as it is still dropping.

I wish i could see inside my body sometimes and work it out for myself! I am so frustrated.................................


----------



## dragonfly

johnnyO, if i may ask, how and why did you decide to go off the immunosuppressants? i wish i would have never started remicade...i have been med free besides the occasional pain pill & antibiotics for over 10 years!! when i was told i have HS and after my last MRI they told me my inside bag (j-pouch) was starting to pull away from the rectum and my choices were have a 50/50 chance surgey to try to pull the bag down over the bad spot again with the chance of losing it for good or try remicade which they said it the best for both crohns & HS....so after waiting almost 6 months i finally deciding to try the remicade...ive only just had my 4th dose and to be honest i havent really noticed any difference with anything???? since starting the remicade i have lost 20+ lbs, which i was almsot 150 to begin with so to me thats not a big deal...if i was say 115 and lost over 20 lbs i can understand concern but i had the weight to lose anyhow....im at im at 124 now almost my weight before kids!! ive always been very very pale so to me thats nothing new but these bags under my eyes are horrible!! and i do sleep gosh since starting the meds ive felt like ive been hit by a bus! i have no enegry and this bump/cyst thing is the most bothersome more so than the crohns. ive had crohns well they thought it was UC when i was a kid but ive had it since i was 5 im 32 now so i have learned what i can and connot eat and follow it. 
rochelle...i am so sorry you feel like you have lost faith. by all means see another doctor!! never settle for someone who you feel doesnt "get" you! i have been through so many doctors since i was 5...ive heard that i was crazy i loved the attention, believe me i have heard it all!! i have 2 good doctors now my GI & my surgen but they are also the ones who dx me with HS and after seeing no results from this med i took it upon myself to make an appt with a derm against both my drs wishes...i asked them to refer me and they both flat out said no!! they told me when they feel they need help they will ask for it....well i saw a derm and he said he is 99% sure it is NOT hs!!! my lump/bump cyst is in the same area my left inner thigh and it is not pretty!! it swells to the size of a golfball and burns and throbs and it just plain nasty! i try to sit in the bath with the water as hot as my skin can handle to help open it and draw the ick out...which this does help but it has never drained completly. im just waiting to go back and see the derm so we can finally determine excatly what this thing is. please call around and find yourself another doctor...they make alot of money doing what they do the least they can do is give you the time of day and listen to you and try in every way to help. i wish you all the best!! good luck to you!


----------



## RochelleRudolph

Just got back from seeing a different GP.

He said it looked like an abscess, so has put me on really strong antibiotics for 2 weeks.  He said i may still need it removing, but we'll see if these antibiotics work first.  

It is sooo painful, i am struggling to actually sit down !!!!!


----------



## kad

Woke up the other day and took a shower and was soaping and almost fell to the ground. This red/black bump looking like another breast scared the crap out of me. I knew this wasn't good. Started research with the Crohn's sights and came upon this. It is for sure HS, lucky me and disease. Hope I can get it under control, it sounds like it could get better or worse. This is just another thing I'll have to deal with. Thanks for the information. Sorry for all that have this terrible disease!!


----------



## JohnnyRottenAppleseed

dragonfly said:


> johnnyO, if i may ask, how and why did you decide to go off the immunosuppressants? i wish i would have never started remicade...i have been med free besides the occasional pain pill & antibiotics for over 10 years!! when i was told i have HS and after my last MRI they told me my inside bag (j-pouch) was starting to pull away from the rectum and my choices were have a 50/50 chance surgey to try to pull the bag down over the bad spot again with the chance of losing it for good or try remicade which they said it the best for both crohns & HS....so after waiting almost 6 months i finally deciding to try the remicade...ive only just had my 4th dose and to be honest i havent really noticed any difference with anything???? since starting the remicade i have lost 20+ lbs, which i was almsot 150 to begin with so to me thats not a big deal...if i was say 115 and lost over 20 lbs i can understand concern but i had the weight to lose anyhow....im at im at 124 now almost my weight before kids!! ive always been very very pale so to me thats nothing new but these bags under my eyes are horrible!! and i do sleep gosh since starting the meds ive felt like ive been hit by a bus! i have no enegry and this bump/cyst thing is the most bothersome more so than the crohns. ive had crohns well they thought it was UC when i was a kid but ive had it since i was 5 im 32 now so i have learned what i can and connot eat and follow it.
> rochelle...i am so sorry you feel like you have lost faith. by all means see another doctor!! never settle for someone who you feel doesnt "get" you! i have been through so many doctors since i was 5...ive heard that i was crazy i loved the attention, believe me i have heard it all!! i have 2 good doctors now my GI & my surgeon but they are also the ones who dx me with HS and after seeing no results from this med i took it upon myself to make an appt with a derm against both my drs wishes...i asked them to refer me and they both flat out said no!! they told me when they feel they need help they will ask for it....well i saw a derm and he said he is 99% sure it is NOT hs!!! my lump/bump cyst is in the same area my left inner thigh and it is not pretty!! it swells to the size of a golfball and burns and throbs and it just plain nasty! i try to sit in the bath with the water as hot as my skin can handle to help open it and draw the ick out...which this does help but it has never drained completly. im just waiting to go back and see the derm so we can finally determine excatly what this thing is. please call around and find yourself another doctor...they make alot of money doing what they do the least they can do is give you the time of day and listen to you and try in every way to help. i wish you all the best!! good luck to you!


Hey sorry for delayed response. I went off immunosuppressants because I started getting really bad infections abscesses twice a month that requires lots of trips to doc for cutting and draining and then weeks of home wound care. I also had no energy at all and wasn't myself. I've been off immunosuppressants since 11-2011. I've had two flares since which were both successfully treated with cipro and flagyl. I just had another abscess grow in my armpit. 1st in a year . It started going away on its own but it didn't drain which is weird. Anyways, I hope you are well! Tell us how the remicade is working .


----------



## VJK

Lump?

I have had Crohn's Disesae for 22 years but have recentley developed a lump in my groin 3" under the skin my leg hip aches and getting bad consitpation, it is not somthing I have heard of with Crohn's can anyone tell me if they have had the same symptom?

I pasted this on another thread I wondered if Hidradenitis Suppurativa might be the problem? 

It is a fatty lump which is movable but has not got bigger or smaller in 4 weeks, I have a ultrasound in a weeks time, any ideas?


----------



## Neecka

This is what works for me:

1.) hibiclens-shower at least twice a day using this in the area each time

2.) no deodorant-the good thing about hibiclens is that it eliminates the need for deodorant 

3.) vitamin c capsule- take one everyday to help your immune system fight this thing

4.) turmeric capsule- the disease is the inflammation of your sweat glands and turmeric is anti inflammatory

5.) hydrogen peroxide- only when you have an open wound...really lay it on there

6.) veet sensitive formula- its a hair removal cream that comes with a blade. You may have to leave it on for longer than reccomended but you will be fine..I've accidentally gotten this stuff on the lumps and there was still no burning. Make sure to clean the blade with alcohol after every use.

7.) medicated cornstarch powder- because it simply absorbs sweat instead of stopping you from sweating all together *i find that we sufferers cant sweat too much because there will be a flare up and can't stop our selves from sweating completely or there will also be a flare up*


GOOD LUCK...STOP USING ANTIBIOTICS...AND STOP GIVING THE SURGEONS A FEILD DAY


----------



## blee0121

I have had four of these boils in the past year. And Im worried that I may have this as well. I have hypothyroidism, Crohns and Ulcerative colitis (that I know of) I had one boil on the back of my ear that was incredibly painfull. I have one now on my stomach. I didnt even know this disease existed until looking it up today. I hope that they are just ....regular boils? lol I guess.


----------



## JohnnyRottenAppleseed

My armpit was just a boil and NOT HS. A dermatologist can tell you for sure. It's probably just a boil.


----------



## Christie

omg I was diagnosed with this 2 days ago and I was terrified, I have had Crohns for 20 years and now this!!


----------



## JohnnyRottenAppleseed

dragonfly said:


> hi maloo! i was just diagnosed with HS a few weeks ago. i was planning on starting remicade for my crohns but when i met with my GI i showed him this "new" lump/bump thing that we had thought was a crohns related fistula but he thought otherwise and now it has a new name HS!! i started flagly & cipro to clear up the infection but if that doesnt work then we will talk surgery?? my dr says that remicade also works well for helping this skin disease. what kind of surgery are you having if you dont mind me asking? i have mine (lump/bump) in my groin area right side inner thigh and it hurts! walking sitting playing with my girls has become so painful, i do have pain meds but they make me sick to my stomach on top of my other meds and if i take them before bed i am so restless! i really did not want another sugery....i just had 3 fistulas removed back in Jan and these where between my legs and dr just left them open to heal on their own, one was so deep it had to be packed! they took a total of 6 weeks and 4 days to completly close and heal...though still to this day they are rough scars and one when you touch it you can still feel a lump inside. my dr is thinking maybe them were from HS and not the crohns. but i dont understand how can it be a fistula if its not crohns? im sorry to ask you 100 questions and throw all my business at you but to be honest you are the 1st person i have found who has this as well!! please do give your opinion or thoughts and advice when you have time, i would greatly appreciate it!! i wish you well, and again thanks for your post you have no idea how much it helps me to know im not alone with this!


How are you doing? Remicade is good for HS? See how they push remicade or Humira like a crack dealer? I never heard of remicade for HS. It's highly suspicious that two doctors diagnosed you with HS, a skin disease, and not only did they not refer you to a dermatologist, they were against it?! Very fishy. Definitely get a 2nd opinion from a Dermatologist.


----------



## dragonfly

Hey JohnnyO!! i am doing fine, thanks for asking! i am no longer on remicade, it has failed me!! they wanted to double the dose but i said no thank you. i have seen 2 derm. and they both have confirmed the dx as HS a bummer but it is what it is! i have had the large lump in the groin removed, thank goodnes a skin graft was not needed but the healing was hard. my new dr said there is a chance for it to come back but it has been worth it so far! i am currently med free!! crazy i know but its working and i dont want to rock the boat! i have found a new dr at a new hospital and he is wonderful, much better than the crap i was dealing with a cleveland clinic. i have been an unsual case my entire life...i was dx with UC 1st and at 15 had my entire colon removed with a reversal bag and told that i was cured afterwards but 3 months later when they put me back together i began to have problems all over again and then they changed my disease to crohns and as we all know there is no cure for that. ive been told all my life, well early teens that these lumps/bumps where anything & everything from an STD to pimples! when they 1st brought up HS i didnt want nothing to do with it so i was really hoping they were wrong but again i have seen 2 derms and a plastic surgeon (before having the largest removed) for skin graph reasons and my new dr all of them have no doubt it is HS. crohns & HS go together, for some people. it is just such a gross embarassing thing to have and it was a wonderful feeling when i found maloo who had no problem telling me her story and made me feel so much more at ease. im a very shy quiet to my self kind of person when it comes to my health so this site has been such a help to me! and yes i agree with you 100% about trying to push these drugs on you! after i refused to double the remicade my dr @ CC wanted me to try humira next, after he just told me a yr before that remicade was the one proven to help both crohns & HS but it didnt work for me so they both were completly comfortable trying to push the other drug on me! that was another reason i moved on to find a new dr, i am now at case western U in cleveland and i could not be more happy with my new dr. How are you doing, what meds are you taking?


----------



## mish2575

How is everyone doing?  Any new updates?   Dragonfly, How did you FIND a Derm specializing in HS?  I have been through 4 Derms already (the latest in Boston) and dont like either.  I've had the worst luck with them.   


I wasn't able to find this thread and posted a new one but i think it would be best to continue the discussion in this ongoing thread because it is so informative.  Here is what I wrote:

I came down with HS during my 2nd/last pregnancy in mid 2011. It mostly stayed in the groin area (is groin a proper term for women too?), except for one bump in my armpit. I had to visit the dermatologist to have lancing once a week during my last trimester. I had 10 boils, on average, at any given time. It was the absolute worst pain I have ever experienced. Dilaudid did not touch it. 

Since the birth of my daughter it seems to SLOWLY improve. I know have only 4 bumps left but they are going down so slowly that it will take years for them to heal at this rate. I am considering surgery to speed up the process. 

Additionally (this is gross), two of them when i squeeze the puss out smell rancid. The other 2 are just regular puss. 

Yes, I know I should not squeeze them but i cant help myself. The pressure builds and I drain it a bit and it feels better. I cant let the (dirty) puss just sit in my body. . . I mentally feel like i want to get the yuck out to give my body a better chance at fighting the infection. 

I'd love any input from other sufferers. Thanks.


----------



## dragonfly

Hey Mish2575!! Welcome to the site! I am sorry for all your going through, I think we all wish it would just GO AWAY! My GI/ColRec surgeon is based out of Cleveland, Oh and somehow I was lucky enough for him to work along side a Derm who spec is HS how it happened was PURE LUCK! I had seen many and was told by 3 NO way it was HS and 2 said NO DOUBT IT IS....so it was a HUGE relief to finally give it a name. Do you have any other health issues Crohns, Colitis or anything? Thats makes sense to be worse during pregnancy..mine acted up as well. And to answer your question about "the groin" for women!!! my dr/derm always referred to it as groin area when talking about me so I use the term as well! And dont feel bad..I think we ALL try to drain them ourselfs, just be careful doing it. I sit in the bath (when I get a chance, I have 2 kids so not much free time) with the hottest water I can stand then use a heating pad when need be. There is a book out there maybe you can get it from your local library called Hidradenitis Suppurativa by Gregor B.E. Jemec, Jean Revuz, James J. Leyden it is expensive as h*ll almost $100 and it written by dr's so its somehwat hard to read in parts I found this book to be so very helpful in so many ways and it is the ONLY book written on the subject! My dr has given me a cream Clindamycin Phosphate Lotion thats works well at drying it out for relief for awhile it always comes back but works for awhile! Good luck to you!


----------



## mish2575

Thanks for the reply.  I also have 2 little ones so i know about time constraints.  
I have Crohn's (since March 1999), light Psoriasis (Humira must be keeping it in check), an eye issue (never diagnosed only treated well by my opthamologist), thrush and HS.  I think that is it.  I have hip pain that i'm not sure is related but probably is - inflamation related somehow.

I do the hot baths - with Epsom salt - when i can.  Its harder to get myself into it since summer has hit though.  

I do have some antibiotic lotion that i was prescibed early on when they didnt know it was HS - I should try that when it is open.  I also finish each shower with a Hibiclens wash in the groin area.    

So has anyone had successful surgery?  I just have these last lingerers. . . i havent had any new ones in about a year.  I'm feeling like surgery would be the fastest way to get rid of them.

I'm only 38 and, although I"m married, I would like to get back into wearing a bathing suit and (generally) feeling sexy again.


----------



## JohnnyRottenAppleseed

Those suffering HS symptoms. What meds are you on?


----------



## mish2575

None now.  I havent made another appt with my derm to try something new.

 I was on a double antibiotic regimine (minocycline and doxycycline) with acidopholis probiotic (to make sure i didnt develope C.diff).


----------



## JohnnyRottenAppleseed

I meant what Crohn's meds


----------



## mish2575

Asacol since 1999
Humira since approx. 2010, before that Remicade since 2001.

I'm pretty sure the meds arent what caused it.  Asacol is pretty benign and Humira seems to help it.  I developed it when I was taking a hiatus from Humira due to pregnancy.


----------



## JohnnyRottenAppleseed

I haven't had an since I went OFF Lialda and 6mp.


----------



## mish2575

How long ago? How long did it take for last one to go away?  

I'm wondering if my IUD, mirena, us hindering my recovery.


----------



## JohnnyRottenAppleseed

My GI doc was convinced I had HS due to reccuring boils in groin area, buttocks, armpits. Dermatologist said def NOT HS. I've been off all meds since oct 2011. I went from having a new abscess or recurring abscess every month or twice monthly. I now get like one a year. I was on 6mp and Lialda. Lialda is total garbage in my opinion. Besides flushing down the toilet unabsorbed, one of the side effects is Colitis! Sure enough as soon as I stopped
Lialda I felt better. Fewer trips to bathroom and no more
Cramping and pain. Same
Thing happened to my friend when he quit. I had zero energy on 6mp. Compared
To how I feel now I'm sure the 6mp
Was slowly killing me.


----------



## dragonfly

I have the IUD mirena as well and I have no problems with it. Im completly med free right now! I was taking remicade, my dr at the cleveland clinic had been trying to get me on it for 2 yrs before I finally agreed. He said that remicade has shown to help ease HS as well, which I believe is a load of crap! It didnt do anything for my Crohns, HS or fistulas. Surgery is a really big deal with HS, depending on where on the body it is your talking skin grafts possibly. I had the one on my left thigh/groin area removed with no need for a skin graft because the doctor/derm said it was so old had been cut and drained and mutilated so much that it eventually burned itself out had pitted so deeply that it was confinded to that area only and didnt effect the skin/tissue/layers around it. I feel ya with the bathing suit issue I ALWAYS wear shorts and I hate it! I was taking spironolact & citalpram as percribed by my derm for the HS one is a water pill and research shows that it helps eliminate excess water from your body/skin in my case besides having to use the bathroom much more I dont think I benefited much from it and my insurance no longer covers it so I've been off both for months now. JohnnyO I would get a second even third opinion about your DX for HS. Many drs & derms dont have much experience with it (only the good ones and ones you can really trust actually admit that they dont know much about it) but it took me awhile to finally get Dx with it. My family dr had always cut & drained it when I was much younger and never thought much more about it as cysts run in my family even after I was Dx with Crohns in 95 they didnt relieze it was HS it was only 2 yrs ago they put a name to it.


----------



## silvermander

I have been through Remicade, Humira, and now on Cimzia.  I've also tried all sorts of antibiotics, and am on a really expensive one right now, but I cannot recall the name.  No matter what I've been on, or when, I've been dealing with HS.

Honestly, I didn't even think about the groin, or that thing behind my ear, being at all related to under my arm!  I've been dealing with severe HS under my left arm for the better part of 15 years, and haven't had any luck with any meds, no matter what combination.

My GP told me that only I can decide when it's time to have surgery.  I told her it's time.  So I've seen my surgeon, and we discussed it all, and I'm tentatively set up to basically have my left armpit removed on July 19th.  I'm quite tweaked out by the whole thing because he said there's a lot of destroyed tissue that needs to be removed, and then he's leaving the wound open to heal naturally.  He did the same with my last small bowel resection and it really sucked, but it was the best way to do things in the long run.


----------



## dragonfly

silvermander, I wish you the BEST of luck. I hope that everything goes well and you can finally start your healing process. Please make sure you have help on hand, it will hurt like a mother f@*cker and you may have days that you dont want to try anymore that you wish you would have never made this desicsion just remember that you can get through this, we are ALL here for you and wish you well. What I went through is nothing compared to the armpit, letting it heal on its own sounds crazy but is the best way. I got through it with the help love & support from maloo & slim on this site, as well as others also but to be able to talk to someone who has been there done that was such a relief and so nice to know your never alone. I will keep you in my prayers and will not forget you on July 19th. I wish you the very best of luck my friend. Please know that you are not alone.


----------



## silvermander

Dragonfly, thanks!  This site is fantastic, and people here are just wonderful.  I'm not sure how I would have made it through my last bad spell and surgery without everyone here.

Turns out my GI wants me to wait to have my HS surgery because he just upped my Cimzia, and is putting me on Imuran.  Luckily my HS isn't bothering me in a huge way right now because of all the antibiotics my GI has me on.  So my GI is talking to my surgeon about waiting a bit on this one until we can either get my gut a bit better, or the HS becomes so unbearable that we have to do it.

I am still going to have it done, just not in a couple weeks as was previously planned.

I know how it can be post-op, and how sometimes you just want to throw in the towel.  I feel like I've been there too many times, and was wondering what I was thinking going into this one when it's not really bothering me too badly right now.

Again, thanks for everything, and it's not as if I'm going anywhere, I'm still going to be all of this site, and this thread!


----------



## JohnnyRottenAppleseed

dragonfly said:


> I have the IUD mirena as well and I have no problems with it. Im completly med free right now! I was taking remicade, my dr at the cleveland clinic had been trying to get me on it for 2 yrs before I finally agreed. He said that remicade has shown to help ease HS as well, which I believe is a load of crap! It didnt do anything for my Crohns, HS or fistulas. Surgery is a really big deal with HS, depending on where on the body it is your talking skin grafts possibly. I had the one on my left thigh/groin area removed with no need for a skin graft because the doctor/derm said it was so old had been cut and drained and mutilated so much that it eventually burned itself out had pitted so deeply that it was confinded to that area only and didnt effect the skin/tissue/layers around it. I feel ya with the bathing suit issue I ALWAYS wear shorts and I hate it! I was taking spironolact & citalpram as percribed by my derm for the HS one is a water pill and research shows that it helps eliminate excess water from your body/skin in my case besides having to use the bathroom much more I dont think I benefited much from it and my insurance no longer covers it so I've been off both for months now. JohnnyO I would get a second even third opinion about your DX for HS. Many drs & derms dont have much experience with it (only the good ones and ones you can really trust actually admit that they dont know much about it) but it took me awhile to finally get Dx with it. My family dr had always cut & drained it when I was much younger and never thought much more about it as cysts run in my family even after I was Dx with Crohns in 95 they didnt relieze it was HS it was only 2 yrs ago they put a name to it.


IMHO it's the Crohn's meds that cause this. Is there anyone on here who has HS and isn't on meds for Crohn's? Like 6mp Lialda humira etc...?


----------



## Christie

I was diagnosed with hs a couple of months ago, I have been on infliximab for about two years and didnt have it for 6 months as I had an abscess, they removed the abscess and this is when I was told it was HS, they told me the treatment for the HS is infliximab which I couldnt get  my head around as I developed it whilst on the infliximab! I have had one infusion since being diagnosed and the original abscess has come back but not seen my doctor yet


----------



## mish2575

VJK said:


> Lump?
> 
> I have had Crohn's Disesae for 22 years but have recentley developed a lump in my groin 3" under the skin my leg hip aches and getting bad consitpation, it is not somthing I have heard of with Crohn's can anyone tell me if they have had the same symptom?
> 
> I pasted this on another thread I wondered if Hidradenitis Suppurativa might be the problem?
> 
> It is a fatty lump which is movable but has not got bigger or smaller in 4 weeks, I have a ultrasound in a weeks time, any ideas?


Ultrasound??  I never got one of those.  They did a biopsy to determine the tunnelling pattern was consistant with HS

I havent had any joint pain at all from HS.


----------



## mish2575

JohnnyO said:


> IMHO it's the Crohn's meds that cause this. Is there anyone on here who has HS and isn't on meds for Crohn's? Like 6mp Lialda humira etc...?


Interesting theory.   I am on Asacol and Humira.  I THINK my HS is starting to recede but it is an EXTREMELY slow process.  One boil can take many many months to heal once it decides that is the direction it is going to go.  I am down to 4 (although 2 of them MIGHT be attached underneath).  I've determined that as soon as the pus becomes very stinky then it is on the road to recovery.   I have only 1 at my tailbone that does not want to heal but it keeps getting trama.  I banged it BAD once when it was extremely enflamed, i've had it biopsied, it is the largest - my husband says that when we push all the puss out (he does this for me when it opens on its own every month or so) the hole in the skin is small like an 1/8 of an inch but the cavity underneath is ginormous.  I almost want a stint or something like that.  I wish they'd open it and pack it, you know?

back on topic. . . my gut (no pun intended) tells me that it was horemones for me (i was pregnant when it started) and not the drugs.  In fact, i stopped the humira during my 2nd trimester.


----------



## JohnnyRottenAppleseed

I was getting boils 2 a month with multiple doctor visits per week for lancing. I haven't had anything lanced since I went off all meds. I also have been getting proper vit D from sun and eating well.


----------



## mish2575

You could be on to something then, as we all know each person's disease is different.:yrolleyes:


----------



## dragonfly

Hey mish....in your post I saw you said you have a lump on your tailbone that doesnt want to heal. I had one there too and it would come and go but in that area it hurt like a son of a gun at times! Before an exploratory under anesthesia (I dont have a colon) I told my GI/surgeon about it and how much it had been bothering me with the coming and going and when it came it was h*ll. Long story short when I woke up I tried sitting up and it hurt so bad, she informed me that I had pilonidal disease (cyst on tailbone) and she cut it open, dug it out, and packed it. It may never come back but its not 100%. That thing hurt so bad and it took 9 wks to finally heal and close up on its own and that was 2 yrs ago and (knock on wood) it hasnt been back yet!


----------



## slb815

Hi all,
It's been great to read your stories as I have experienced some of the things you have written about and don't feel alone now! I've had Crohn's for around 16 years. Been on 6mp for over 10 years now.  Like a few of you, I also have an IUD-Mirena. I also have been diagnosed with hypothyroidism and have taken Synthroid for almost as long as the 6mp. 

Have had these bumps/boils off and on for about 12 years. They come and go but when I get them they take forever to heal. At one point I had a few under my arms but that was only once and they were more like open sores that the cyst like things I now have in my groin, left side in crease of leg/thigh and groin. They are dark purple-bruise like and one is open and leaking puss. Totally gross. They make wearing any kind of underwear unbearable. At night I go commando and they tend to shrink some, then during the day the pants/underwear I wear make them swell again. My GYN dr. gave me Keflex for 7 days--it hasn't helped a bit. Tried to do a few baths, that seems to give me temporary relief. Now I've resorted to putting gauze down there to save the puss from staining my underwear and pants and hoping they will go away on their own. I do think they are HS, no official diagnosis, but after everything I've read I'm pretty sure that's what they are, although they are not nearly as bad as the pictures I've seen. 

JohnnyO-Wondering how you tapered off of 6mp. I really want to try to go med-free for awhile but I know my dr. will not be happy about it. 

Thanks for reading my story and I appreciate you all sharing yours so I know I'm not alone!


----------



## JohnnyRottenAppleseed

Against doctors orders I went off 6mp cold turkey. My family doc was
Monitoring my blood but she was the one lancing and draining my boils and packing my wounds 2-3 a week. After watching me suffer for over a year she gave me her blessing, off the record, to go off meds. Off the record.  My GI was pissed. I havent been back to him since. He was just a drug pusher. Sad he is one of the top GI in his field in the US. Total Big Pharma drug dealer. I'm convinced Merk or whomever pimps humira is building him a huge retirement villa somewhere tropical. I feel amazing today. Normal bowel movements , no more boils. I only flare about once a year and knock the flare dead with cipro/flagyl. I take probiotics and S Boulardii and get adequate Vit D. Magnesium. Zinc and eat organic and avoid GMOs.


----------



## slb815

Thanks for your story. My doc sounds like yours... Last time I went to him with complaints about bloating and pain in upper right quadrant he did an endoscopy and gave me Prevacid, telling me to consider Remicade or Cimzia. I refused the new meds and only tried the Prevacid for about a week or two. My pain continued until I started a low carb diet.. Pain subsided within a week. I've since went back to normal diet and pain occasionally returns. I was convinced it was my gallbladder and still think it is. 

Nonetheless, I'm considering trying the Paleo diet or cutting out gluten. I'm in the beginning stages of researching how I can alter my diet to eliminate the need for medication. I also worry about the long term effects of 6mp.


----------



## Nutlug88

Hey guys I have been Diagnosed with HS as well as my wife ( she has had it for 15 years ) I have been trying to get a diag for crohns  but have been having problems. Those of you in California contact Dr. Daniel Eisien at UC.Davis There is no cure but he is the fore most expert on HS in California. Lancing the lesion causes more scaring and more lesions try a cortizone injection in each lesion it helps. Here is a paper Dr.Eisien just wrote on current treatments that you should print out and bring to your derms  cosderm.com/fileadmin/qhi_archive/ArticlePDF/CD/024050226.pdf


----------



## mish2575

Thank you. Yhd only time I've gotten the shots were when they were already too big to stand the pain. Less than 12 hours after a shot they always burst on their own.


----------



## mish2575

Neecka said:


> This is what works for me:
> 
> 1.) hibiclens-shower at least twice a day using this in the area each time


I found Hiiclens works well, just be careful. . . I've also figured out that it caused me to have UTI symptoms.  

It took me a long time to figure out what the heck was going on.


----------



## crohnsconfused

I've had HS since i was 14 years old on both sides of my groin. I have tried topical and oral antibiotics and nothing seems to help it. I have many sinus tracts and intense purple scarring. At age 18 I started experiencing GI symptoms and later developed an anal fistula. Has anyone had a Crohn's diagnosis like this after years of having HS?


----------



## Patticakes

My son has been suffering from HS for 10+ years. He is classed stage III. He has taken, Accutane, Flagly, Doxicycline,  prednisone, turmeric, low sugar diet.  

He has had surgery to remove both armpits, by slicing his back and moving his skin forward to create armpits. His 1st surgery he De-hissed; two weeks after surgery. His seams re opened when they started to remove his staples. He ended up with a post surgical infection and a wound vac. His 2nd surgery his surgeon did not allow enough room for swelling and he had to undergo a surgical cut down without anesthesia 4 hour after surgery because of compartment syndrome.  He spent 12 days in the hospital trying to save the flap, but eventually lost it and spent 6 weeks on a wound vac. He was just diagnosed with UC. His Dr is recommending Remicade.

I used to be in the business years ago, I was a buyer: pharmaceutical, chemical and botanical, for a company with 12 production lines and 5 research laboratories.  I question every medication.  My apologies is this upsets anyone, but if they do not know what causes UC and they do not know how to cure it, then why treat it with a drug that is systemic, not pin point. Why risk other organs?

30 years ago I watch my father being treated with tons of medications, diet etc, for a bleeding ulcer, only to find out years later is was h pylori and treatable with a antibiotic. He died of damage to his kidneys. My sister took a medication for weight loss which later was taken off the market; she died of heart failure due to that drug. My son was on Accutane, we now know it may lead to UC, we are in a lawsuit with the parent company. Drug companies are out to sell merchandise and if that merchandise has complications all the better, then they can sell you a second product to fix it. I feel like they have lost their way. Yes, there are medication that works, yes if you get a great doctor who can work through the BS you can get to that medication.  
You can see what "incentives" your Dr is getting from the drug companies here..... https://openpaymentsdata.cms.gov/

I am so confused, I want what is best for my son, but I am afraid of what remicade might do to his body down the road. What experience have other had with a UC treatment that worked or at least helped with the symptoms?


----------



## InstantCoffee

Patticakes said:


> My son has been suffering from HS for 10+ years. He is classed stage III. He has taken, Accutane, Flagly, Doxicycline,  prednisone, turmeric, low sugar diet.
> 
> He has had surgery to remove both armpits, by slicing his back and moving his skin forward to create armpits. His 1st surgery he De-hissed; two weeks after surgery. His seams re opened when they started to remove his staples. He ended up with a post surgical infection and a wound vac. His 2nd surgery his surgeon did not allow enough room for swelling and he had to undergo a surgical cut down without anesthesia 4 hour after surgery because of compartment syndrome.  He spent 12 days in the hospital trying to save the flap, but eventually lost it and spent 6 weeks on a wound vac. He was just diagnosed with UC. His Dr is recommending Remicade.
> 
> I used to be in the business years ago, I was a buyer: pharmaceutical, chemical and botanical, for a company with 12 production lines and 5 research laboratories.  I question every medication.  My apologies is this upsets anyone, but if they do not know what causes UC and they do not know how to cure it, then why treat it with a drug that is systemic, not pin point. Why risk other organs?
> 
> 30 years ago I watch my father being treated with tons of medications, diet etc, for a bleeding ulcer, only to find out years later is was h pylori and treatable with a antibiotic. He died of damage to his kidneys. My sister took a medication for weight loss which later was taken off the market; she died of heart failure due to that drug. My son was on Accutane, we now know it may lead to UC, we are in a lawsuit with the parent company. Drug companies are out to sell merchandise and if that merchandise has complications all the better, then they can sell you a second product to fix it. I feel like they have lost their way. Yes, there are medication that works, yes if you get a great doctor who can work through the BS you can get to that medication.
> You can see what "incentives" your Dr is getting from the drug companies here..... https://openpaymentsdata.cms.gov/
> 
> I am so confused, I want what is best for my son, but I am afraid of what remicade might do to his body down the road. What experience have other had with a UC treatment that worked or at least helped with the symptoms?


Accutane is linked to Crohn's (I didn't know about colitis but it wouldn't surprise me) however Crohn's is also linked to HS, one often comes before the other. 

HS is believed to be an inflammatory condition similar to Crohn's and Remicade / Humira should be effective at prevention symptoms of both diseases. 

The link would further suggest that Crohn's / Colitis are bacterial or viral conditions considering that HS is reported to respond to treatment with zinc and magnesium as well as restricted carbohydrate diets. 

If so the bacterias that cause Crohn's are likely the same, and our leading culprits in Crohn's are AIEC and MAP. 

http://www.ncbi.nlm.nih.gov/pubmed/25994082


Treatment with Remicade and other biologics may be able to suppress activity of MAP according to some studies.


----------

