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Crohn's Disease Forum » Extra Intestinal Manifestations » Skin » Hidradenitis Suppurativa?


 
07-05-2011, 06:02 AM   #1
maloo
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Hidradenitis Suppurativa?

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...
07-05-2011, 02:41 PM   #2
Mayflower537
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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.
07-05-2011, 03:32 PM   #3
maloo
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thankyou mayflower.. appreciate that..
07-07-2011, 07:53 AM   #4
AmyWooden
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Hi, Maloo!

My sister was diagnosed with HS about 8 years ago. has occasional problems with it.
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07-07-2011, 08:26 AM   #5
maloo
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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....
07-07-2011, 09:49 AM   #6
AmyWooden
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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
07-13-2011, 02:59 PM   #7
Silvermoon
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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...
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07-13-2011, 03:23 PM   #8
maloo
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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..
07-13-2011, 03:46 PM   #9
maloo
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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..
07-27-2011, 09:22 PM   #10
dragonfly
 
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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!
07-28-2011, 06:41 AM   #11
maloo
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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
07-28-2011, 09:17 AM   #12
dragonfly
 
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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!
07-28-2011, 10:47 AM   #13
maloo
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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
07-28-2011, 11:12 AM   #14
Lisa
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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!
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07-28-2011, 11:39 AM   #15
maloo
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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..
07-28-2011, 01:33 PM   #16
dragonfly
 
Join Date: Jul 2011
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!
07-29-2011, 08:26 AM   #17
maloo
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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
10-14-2011, 02:04 AM   #18
Becca1991
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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.
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11-08-2011, 07:37 PM   #19
dragonfly
 
Join Date: Jul 2011
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!!
11-08-2011, 11:04 PM   #20
JohnnyRottenAppleseed
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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!
11-13-2011, 03:35 AM   #21
RochelleRudolph
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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??
11-13-2011, 03:54 AM   #22
JohnnyRottenAppleseed
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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?
11-29-2011, 04:32 AM   #23
mirianda
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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.
11-29-2011, 04:38 AM   #24
mirianda
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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
12-05-2011, 07:54 PM   #25
dragonfly
 
Join Date: Jul 2011
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!
12-05-2011, 08:01 PM   #26
JohnnyRottenAppleseed
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I def have abscesses from the immunosuppressants. They have been quit for the most part since lowering and finally stopping 6mp.
12-06-2011, 04:01 AM   #27
RochelleRudolph
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Join Date: Nov 2011
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.................................
12-06-2011, 10:55 AM   #28
dragonfly
 
Join Date: Jul 2011
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!
12-06-2011, 12:41 PM   #29
RochelleRudolph
New Member
 
Join Date: Nov 2011
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 !!!!!
12-30-2012, 09:22 PM   #30
kad
 
kad's Avatar
 
Join Date: Dec 2012
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!!
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