• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Anyone suffer from hidradenitis suppurativa

I have had these sometimes painful boils in my upper thigh area near my bum started out with one on both sides now theres 2 or 3 little ones and the biggest one fills up with blood now and then after i pop them it leaves a hole in the skin and the area around it goes purple and they dont go away like flare up now and then. I havnt told the doctor yet but looked up Hidradenitis suppurativa and it fits my symptoms and it also says people with Crohns Disease suffer it aswell.
 
Becca,
I was diagnosed with this strange syndrome when I was 10 years old, far before my Crohns diagnosis in 2008. I also got the boils around my innwe thigh region, and trust me, i KNOW how much they hurt. When I went to the doctor for treatment, they gave me a shot in each one of the boils (Which also hurt like the dickens), but it made them deflate and heal so that now, only dead skin is in their spots. Later in my life, my GI said it was not uncommon for patients with Crohns to develop these abcess syndromes due tothe amount of infection in our body at a given time. Unfortunately, the only way I know to help treat them or manage them is to get them lanced open and drained at a hospital. If they are left untreated, the infection could get deeper into your body, or cause more abcesses to appear.
Keep your chin up and know that its just a stepping stone to the path of recovery. I know how overwhelmed and angry you must feel, but it gets better. I promise :)
 
Becca,
I was diagnosed with this strange syndrome when I was 10 years old, far before my Crohns diagnosis in 2008. I also got the boils around my innwe thigh region, and trust me, i KNOW how much they hurt. When I went to the doctor for treatment, they gave me a shot in each one of the boils (Which also hurt like the dickens), but it made them deflate and heal so that now, only dead skin is in their spots. Later in my life, my GI said it was not uncommon for patients with Crohns to develop these abcess syndromes due tothe amount of infection in our body at a given time. Unfortunately, the only way I know to help treat them or manage them is to get them lanced open and drained at a hospital. If they are left untreated, the infection could get deeper into your body, or cause more abcesses to appear.
Keep your chin up and know that its just a stepping stone to the path of recovery. I know how overwhelmed and angry you must feel, but it gets better. I promise :)
Thanks for replying

ive had them for ages and i keep sticking needles into them and popping them (i know i shouldnt be), im thinking if they get worse again ill go see my GP and tell him and when i see my GI in 5 months ill def tell him. They are now more annoying than painful at the moment oh and embarrasing lol
 
My late best friend suffered with HS. He had it rough. Boils on his face, underarms, the back of his neck, and one GIANT lesion that went from just above his tailbone, down around his anus, over the perineum (under the testes) and about 8" down his thigh.

He had skingrafts to remove the lesions under his arms, and on the back of his neck the lesions were removed by cutting out the skin (same as the others), however, rather than use a graft, the doctor instead opted to let my friends body grow back the skin to repair the damage caused by the HS. The surgeon did a great job with the removal of the boils. Once they were cut out, they didn't return to that part of the body.

Sadly, he left us the day he was to have the corrective surgery to contend with the mess in his groin. Honestly, I don't blame him one bit.
 
I understand that. I used to never wear a bathing suit in front of people or try on clothes with my girlfriends. Be careful when you pop them yourself--are you disinfecting your needle? are you gauzing the inside of the boil?-I ask this because the hole you speak of in the middle could mean that the sore is a fistula, or a channel of infection traveling between two ports in your body, on being inside and another being outside(your abcess). If this is the case, you definitely need to get some medical gauze and peroxide and clean them out thoroughly--if not, your infection could worsen!!
If theres anything else you want to talk about, dont hesitate darling
 
Slim--I'm very sorry to hear that. Being a victim to these terrible boils, I dont blame him either. he doesnt feel any pain anymore!!
 
CD, with HS, the boils act very much like a fistula. One difference being, the channel (hole) inside leads to another boil. IIRC, it also manifests in the skin, having little to do with the GI tract.

Not to say one couldn't work it's way into another. Especially around the anus.

Could it be a fistula, and a HS boil in the same vicinity? IDK because I don't have HS, and understand it only vicariously.
 
It could be, but the reason Im semi- convinced is simply because the definition of the channels leading to a simultaneous boil are almost interchangable for these two issues. I believe these boils could have started as HS, and may progress like HS, but the infection from the GI tracts only adds to the previous HS infection.
Does that make any sense? lol
 
It could be, but the reason Im semi- convinced is simply because the definition of the channels leading to a simultaneous boil are almost interchangable for these two issues.
That makes sense. More so given the location.


I believe these boils could have started as HS, and may progress like HS, but the infection from the GI tracts only adds to the previous HS infection.
Does that make any sense? lol
That also makes sense. I would figure you know better, living with HS. My friend never showed me his active lesions, maybe he was too embarrassed.

If it were in deed a fistulae coming from the anal region, shouldn't there be fecal matter present? My fistulae are all internal, so I have no reference point.

HS sucks!!! Lancing is painful, and from what I gleaned from my buddy, it often is quite difficult to get rid of a boil once it has started tunneling.
 
I wish i could answer your question, but everytime I've had one lanced open, I didnt see what came from inside. I figured it was mostly puss, but there definitely cuold be fecal matter present, especially considering the circumstances.
And I never showed anyone my lessions, and to this day am hideously embarressed of my scars, so I can understand why he wasnt jumping for joy to show you
 
I wish i could answer your question, but everytime I've had one lanced open, I didnt see what came from inside. I figured it was mostly puss, but there definitely cuold be fecal matter present, especially considering the circumstances.
And I never showed anyone my lessions, and to this day am hideously embarressed of my scars, so I can understand why he wasnt jumping for joy to show you
That breaks my heart.:rosette2: :hug:

I dig scars. I have an uncle that was trapped in a barn fire at age 6. When I was younger, I would just stare in amazement! He also has a webbed pinky finger on his right hand that you feel when you shake his hand. Back then, I would walk around with my pinky in the same position as my uncle. He was the COOLEST!! Not just because of the scars either...:thumright:
 
hahaha thats really cute! You probably secretly wanted to be a badass like him and have a war story to tell. I know thats my perogative.
My grandpa got his middle finger of his left hand sawed off by a table saw, so i get the staring..except i was always quietly curious about it bc I guess I was creeped out lol
And i know the only reason youre talking to me is because of my scars--and its ok ;) lol


I hope you like sarcasm, because i am fluent in it
 
What is sarcasm? I don't understand...

I actually became my own badass. My ass is SO BAD!!!

I thought the tattoos, and motorcycle would be subtle indicators. ; )
 
is that what thats supposed to symbolize?
I thought you were just going through a mid-life crisis
I'll be sure to take more notice of your subtle attempts at hardcore-dom


:)
 
is that what thats supposed to symbolize?
I thought you were just going through a mid-life crisis
I'll be sure to take more notice of your subtle attempts at hardcore-dom


:)
HEY!!

Leave my midlife crisis out of this!! (poop)

I didn't buy a Harley, or Corvette!

Btw. I am so crazy that I even scare myself!:cool2:
 
My late best friend suffered with HS. He had it rough. Boils on his face, underarms, the back of his neck, and one GIANT lesion that went from just above his tailbone, down around his anus, over the perineum (under the testes) and about 8" down his thigh.

He had skingrafts to remove the lesions under his arms, and on the back of his neck the lesions were removed by cutting out the skin (same as the others), however, rather than use a graft, the doctor instead opted to let my friends body grow back the skin to repair the damage caused by the HS. The surgeon did a great job with the removal of the boils. Once they were cut out, they didn't return to that part of the body.

Sadly, he left us the day he was to have the corrective surgery to contend with the mess in his groin. Honestly, I don't blame him one bit.
Sorry to hear about your friend, sounds like he had it bad
 
Did he have Crohns?
Yeah, he was diagnosed at 18. It was one of those "Looks like appendicitis..:shifty-t:." sort of discoveries. He woke up missing his Ileum.:thumbdown: He was doing pretty well CD wise until about the last 6 months. He started Remicade, and was experiencing the same issues I was with Humira. He had been struggling with suicide for about a decade. At his memorial, his Father read some passages from Lars' diary, sharing his experience with those who attended. Everyone on this forum knows the struggle of CD. Add to that the HS, and some serious depression..:yfrown:

The thing I miss most about him, is how I could talk to him about the hell I was going through, and we could laugh about it. Misery loves company..:thumright:
 
Yeah, he was diagnosed at 18. It was one of those "Looks like appendicitis..:shifty-t:." sort of discoveries. He woke up missing his Ileum.:thumbdown: He was doing pretty well CD wise until about the last 6 months. He started Remicade, and was experiencing the same issues I was with Humira. He had been struggling with suicide for about a decade. At his memorial, his Father read some passages from Lars' diary, sharing his experience with those who attended. Everyone on this forum knows the struggle of CD. Add to that the HS, and some serious depression..:yfrown:

The thing I miss most about him, is how I could talk to him about the hell I was going through, and we could laugh about it. Misery loves company..:thumright:
Thats so sad what did he die of if you wouldn't mind me asking.
A month ago my mums friend who i was also good friends with passed away from a bowel perforation one after another within one month had over 6 surgeries due to more holes appearing and infections, she had been very ill for years struggled with her health, in 2009 mum and i went over to Texas and visited her.
She did not have Crohn's but its still something to do with the bowel, we miss her alot.
 
oh that is so sad, must have suffered alot and couldnt take it anymore
It takes great strength to deal with either one of these diseases, he had both. I would also add that three weeks before his suicide, he was put on antidepressants. I have a strong feeling that the drugs played a role in his death.

I also understand his feeling about being insane. Getting cut up, over and over, taking the same drugs, over and over. Without any difference in the illness. I feel that way about the TNF blockers the Dr.'s keep shoving down my throat. The prednisone, and all the other crap we have to do to live with CD.

Sometimes, there is no alternative treatment. Sometimes, we must endure Hell to get through the day. After Lars left, I thought I was alone in my fight.

Then I found this forum. It has shown me that I am no longer alone in my fight.

:hug:Thank you all for the mutual support!:hug:
 
hey guys! sorry to just invite myself into this conversation! i too have CD & HS. just alittle background...drs thought it was UC had entire large intestine removed/temp colostomy after the reversal they decided it was CD that was almost 17 yrs ago...i was just DX with HS about 6 months ago...the lump/bump that i have had been treated as a fistula for many many yrs. ive since started remicade in hopes to help with the CD...the problem im having there is my inside j-pouch is now starting to pull away from the rectum becoming inflamed/infected so my dr gave me 2 choices...either try the "pull-down" surgery where they would TRY to pull the bag down over the bad/infected area but if they could not then i would have a premanent colosomy bag, which im not ready for yet...i just turned 32 have 2 girls 5 & 2 and have too much to do right now than have a risky sugery. so i choose the remicade....had my 3rd dose on the 7th and made it through....the nurses & many people on here have said the 3rd dose is the make it or break it one...so far so good but im not noticing any changes in anything! i know its probably to soon but my dr was very excited about me finally deciding on this med he has been trying to get me on this for the part 7 yrs!! by the way i have been med free for the past 7 yrs...well give or take occasional pain pills for the HS and my much dreaded flagy and cipro. ive been told by my dr that remicade has been shown to improve HS as well, anyone else ever hear this?????
becca try tea tree oil on the infected area its helps me alot and i havent bought them yet but when i get the extra money i think i will give them a try i asked my dr about any interactions with the remi and he said i should be good....but back to what i was saying look up Trendeton online its an all natural pill you take once a day for HS and many people have said it works and works well. maybe something you could try as well??
slim...my heart breaks for you. i am so very sorry about your friend. ive only known one other person with HS as bad as you described what your friend went through,and it is horrible and heartbreaking. i am so sorry for the lose of him, but i think the world of you for being there for him and going through it with him for as long as you did. that in itself speaks of the kind of person you are. God rest his soul and bless yours!
 
I have never even joined any type of forum before but I just had to sign up after reading this post. I am 34 year old female and I was diagnosed with mild/moderate Crohn's in January of this year. It wasn't until then that I was also formally diagnosed with HS, which I have had since I was 15 (finally, a name I could put to this strange disease). I have had excrutiatingly painful boils in my groin/buttocks area for years, that were always dismissed as a dermatological skin disorder with no cure. I was given antibiotics over the years with no result. This latest flare has been my worst. I have had a golfball size boil since January that constantly drains pus and looks like it's linked to smaller ones. I went on Bactrim for 2 weeks then attempted a 10-week course of erythromycin which I realized I was allergic to. My PCP is the one that has been treating my HS this year. I was in to see her for a follow-up yesterday as things are still the same if not worse. There are a few more below it, yet smaller, leading to the anal area. She took a specimen to test for infection (really MRSA) and thinks that she is going to refer me to a surgeon. I saw my GI last month and he wanted to do a barium X-ray to see if I have a fistula (?). Sorry I am very new to all of this and it appears that Crohn's and HS are tied together. Anyway, I feel like I need to schedule a "conference" with my PCP, GI, and even a surgeon to come up with a plan. Don't you with we could get them all in one room? I am currently waiting for the specimen results from my PCP who said she would come up with an action plan based on those results.

SlimJohnson: I am very sorry to hear about your friend. It is what made me write this post. I have always felt like somewhat of a freak with HS. After reading your post, it made me feel selfish for someone always has it worse.

Thanks for listening. I hope to learn a lot from this forum.
 
welcome crohnewbie!! this is a GREAT place to find answers and talk with others going through what you are, I have learned many things from people on here! i have a golfball size bump on my inner thigh..have had it for many years and only just told it was HS...i dont disagree with my dr on that DX but i have scheduled myself an appt with a derm @ cleveland clinic where my GI & surgen are as well....just for more options maybe there is something else out there???? it couldnt hurt to see a derm. be careful with surgery...i know one other person who has had surgery and theirs was excatly where mine is and that person has since lost the ability to use thier left leg. having these "things" surgically removed is scary because you dont know how deep they are or where they connect until your inside and in most cases its the surgens decision because you are "asleep"....at least in my experience that is the case..ive went in for just a colonosopy and woke up with 6 deton drains!! best of luck to you whatever you decide!
 
Thanks for the kind words Dragonfly, Crohnewbie. :)

I would be there for you too, if it were possible. I hate to see people suffer... :(

Dragonfly, you sound like you are going through what Lars went through. That is a terrible place to have HS!!! I remember Lars could never get comfortable sitting down.

As far as surgery, I can't speak from my own experience, however Lars had three surgeries (that I know of) to treat his HS. One was on the back of his neck. The surgeon actually removed ALL of the skin that was effected by the lesion. Down to the muscle. No grafting either, as the Dr did not want to risk the HS returning to the surgical site. He ended up going through the sort of recovery that burn victims go through. It did however get rid of the sores on his neck.

He had two more surgeries under his arms for the same issue. I think that there were grafts used in his underarms, although, I am unsure...
 
yeah i know what you all mean... boils suck... i get mine in my thighs and omg i just hate them... i have so many scars.
 
hey guys! it has been awhile...hope you all are well!
i have news...good or bad....i myself havent decided yet! wanted your alls help with that! i tried the remicade, it didnt work. i have since moved on to a new dr (like him very much) he explained to me that remicade was never going to work for me...being that i was started on it much too late to ever have a chance (it only really works for NEW fistulas) which my old dr didnt bother to tell me. but either way i gave it a fighting chance and im done now. this new dr has confirmed the HS dx (and he has experience with it as well!!)
slim, im sorry to ask...but i need your help/opinion/feelings now please and dont hold back on me...i NEED to know the good & the bad. i am scheduled for surgery sept 5th to remove my "HS". i met with a plastic surgern and he doesnt think i need skingrafts (thats good, right???) he also has done this surgery before and for that i am grateful or do feel more comfortable. he seems like a very good dr...i told him my bday is the 11th and if he found the kindness in his heart he could also lift my boobs back up to were they were before my children!! hey its not that much to ask is it!!?? im sorry.
im very much nerveous and excited also?? they both (plastic & colorectal surg) says it will all be outpatient not even overnight....said i should invest in some mesh panties and LOTS of gauze! ill be honest i have started xnax because well how else can i put it...i am my own worst enemy??? i have laughed i have cried i am terrified but hopeful. i just dont know i am scared shitless to be honest i feel so helpless and i hate that feeling because i am strong and tough and no matter how much i hurt i always always suck it up and dont complain or tell and now i just have so many feelings going through me i cannot even stop thinking am i making the biggest mistake of my life by doing this or will it be the best thing ever??? they told me there is no garuntee that i will in anyway be "cured" it may come back it may not.....im just so unsure of myself and my decision to go through with it. to me i think well if its outpatient and not even overnight then it cant be that bad but after i read posts i am crying with worrying. i have 2 girls that are my life they are what keep me going and i cannot be this scared unsure of myself little lost girl that they do not know but im not sure where my courage & strenght have gone. have i given up and let fear win?? i just need to know that im doing the right thing and i dont know how to get that answer. just being able to hear your input would mean alot, you have experience with it. and again i am so very sorry to bother you i dont want to open up old wounds or make you remember things you wish not too. i just dont know anybody else who has been through this and done this road (surgery) i have tried to get ahold of one other friend on here that has had the surgery (which she regrets everyday) but i havent heard back from her. im a mess and im sorry i am just so full of fear and confusion this is not me and im not comfortable with it. drs said that it was a skin condition...so the wound cant be that deep right??? they did say that they will leave it open to let it heal from the inside out...2 yrs ago i had something (pilodalie ??? disease) removed from my tailbone/spine and i was on alot of pain meds but the next day when it was time to remove the packing the wound was so deep i could see my tailbone the actual bone thats how deep it was, i hurt like a b*t@h but i managed...can even remember i was giving the girls a bath one night and i was bending down to wrap a towel around my youngest and hit my backside on the toilet coming down to my knees but i sucked it up and held off the tears til she left the room WOW did that hurt even had blood on the gauze but hey my point was i been through some crap and i should be able to get through this as well, right??? PLEASE your thoughts would mean the world, thanks so much!
 
Hey everyone,

I was just diagnosed with hidradenitis suppurativa a couple weeks ago. I found this website www.hs-institute.com, the video is long and the doctor speaking is kind of dry. I found it helpful though. He goes through the definition, causes and different treatments.

I'm still waiting to get into the specialist and have to go back to the surgeon today because I have yet another stupid abscess. I had surgery in May and that one is still not quite healed. I'm going to look like frankenstein!

I hope this helps someone else too.
 
I have Crohns and HS, both for 10+ years, but the HS was only recently diagnosed. I have it pretty badly, having constant boils in both armpits, my groin, inner thighs, lower stomach and under my breasts. I just started Remicade today, I have researched and seen that it has had some luck in curing or reducing symptoms for HS.

I hope to be able to get radiation therapy as that seems to be the best option for someone with a severe case of HS. I have constant boils, and just lancing them doesn't do anything, just makes it go away for a while, but they always come back.

Unfortunately HS is even more difficult to treat that Crohn's, and 20% of people can't find anything to give relief. I've had surgery twice, and multiple antibiotics, and its worse than its ever been.

I would urge you to see your doctor right away, because in the early stages of the disease 6-12 months of antibiotics can cure the disease, or surgery, but once you're in stage 3 like me your options are very limited, so don't wait until it gets bad, get treated now!!

I am going to see a dermatologist at the University of Illinois in February, so hopefully then something can be done to help me out. I'm also hoping that Remicade will help, I actually asked my GI to start me on Remicade because it has been shown to help HS as well, and my Crohns was not well controlled, so I needed a stronger medicine than Pentasa anyway.

Good luck to you all!! Having both of these debilitating diseases really sucks and I feel your pain!!
 
hey catherinelyn sorry to hear all you have going on. i was on remicade to treat both my crohns & HS and was told the same that it has been proven helpful in HS....it did nothing for either of my diseases in fact my HS worsen and the crohns/fistulas stayed the same with no improvement at all. i have done so much research and seen so many different derms and drs and they have all said that yes it MAY be benefitial for HS and crohns but thats just it....they dont tell you the entire truth remicade and other meds in that family are very helpful in people who have JUST been dx with crohns/fistulas and HS as well. was not my case and sounds like might be yours as well. i regret very much trying the remicade, it is a hardcore drug with MANY side effects. best of luck in the decision you choose!!
 
I had it for a few years until I was diagnosed with gluten intolerant. After that I started to eat anything without gluten and it stopped. Recently, and because I found some enzymes that would help with the gluten intolerance, I started to eat regular breads, pastas, and gluten meals and the HS came back with a vengeance and so paintfull! I have one the size of my hand palm on my buttock and cannot sit. I am going back to gluten free diet. That I think is the ke
 
There has been some success in trials with Humira, but taken every week rather than every other week, and the disease is slow to respond. The latest research is that this is an autoimmune disease. Our immune system thinks that our apocrine glands are not part of us, and need to be attacked.

There is information on the Humira website.
 
My HS hasn't come back in a long time, though I still get flare ups of facial lesions which I'm not sure if they're related, it seems to come on whenever I start taking a multivitamin so I'm thinking they're related, maybe due to high B vitamins?

So I'm wondering about a few things because these are some of the changes I made when it stopped happening.

How many of you are:
-Gluten free
-Take a multi vitamin or other vitamin supplements
-Consume foods / sweets with high fructose corn syrup
-Consume a high sugar diet
-Consume a low fiber diet
-Consume a diet high in meats
-Take a zinc supplement
-Does your HS flare coincide with your UC or crohns, or have they come during times of remission?
 
My HS hasn't come back in a long time, though I still get flare ups of facial lesions which I'm not sure if they're related, it seems to come on whenever I start taking a multivitamin so I'm thinking they're related, maybe due to high B vitamins?

So I'm wondering about a few things because these are some of the changes I made when it stopped happening.

How many of you are:
-Gluten free
-Take a multi vitamin or other vitamin supplements
-Consume foods / sweets with high fructose corn syrup
-Consume a high sugar diet
-Consume a low fiber diet
-Consume a diet high in meats
-Take a zinc supplement
-Does your HS flare coincide with your UC or crohns, or have they come during times of remission?
Hi! I have been diagnosed with CD 4 years ago (after years of being told it was IBS) and unfortunately with HS 3 years ago. I tried every possible antibiotics, had countless drains (2 of which actually worked after 3 months of "packing" every day... Now it's only a nasty scar!), had 2 surgeries... Now i'm down to 2 abscess that have been there (groin area) for 10 months. I have cortosone injections every month or every other month (depending how it goes) and although it doesn't remove them, they are tolerable for minimum 3-4 weeks! So i guess i'm ok with it

I stopped all antibiotics as i felt my body was totally out of balance. For CD, i decided to manage the flare up and only control it with healthy food (i'm lucky, it's a mild-moderate case!) 2 years ago i went gluten free; my grand-mother and my aunt are both coeliac so i figured i should try it in case i have an intolerance. My CD is 100 times better than it was. I still have flare ups but a lot less frequent and definitely not as painful as it use to be (before, i thought i was dying... Now i can curl up in bed with a hot water bottle and within couple hours it will pass). Personnally, going gluten free helped me. But i have to say i think the best thing that worked for me is exercise (oh yes... Sometimes i feel i will die or s*** my pants on the treadmill but the more i do it, the better i feel). I gradually increased the intensity and duration of my trainings and now i can do 1h-1h30 hours like i was "normal"! (Anyone else feel like they are not normal and you can't do things a "normal" person does!?!)... Anyways, i follow Jillian Michaels moto: if it doesn't grow or doesn't have a mother, don't eat it (basically, nothing chemical or transformed coming in nice little packages)... Ok as much as possible! Lol! Her book "Master your Metabolism" makes a lot of sense... If we don't take care of the inside and throw a bunch of chemicals at our body, it won't respond in a good way! Of course, CD and HS are a little more complex and not everything applies but i find i feel lots better when i eat "clean" and well balanced (and of course gluten free!). Couple exceptions: corn is not my friend (even if i love it!) and spinach and lettuce are a gamble (depends on the day). Beans and legumes in very small quantity... And i can't eat the same thing 3 days in a row, even if i was ok with it rhe first 2 days! (??? Can't explain!!). Overall, i think we're all different and some things will work for some and not for others. This is my way of managing CD and HS ...
 
Top