Share Facebook
Crohn's Disease Forum » Extra Intestinal Manifestations » Skin » Anyone suffer from hidradenitis suppurativa


 
10-11-2011, 12:31 AM   #1
Becca1991
Senior Member
 
Becca1991's Avatar
 
Join Date: Apr 2010
Location: Christchurch, New Zealand
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.
__________________
Dx Terminal Ileitis Oct 09 (Age 17)
6/6/12- 12/6/12: Mini flare but gastro doc put it down to stomach bug
2/2/15-?: Mini flare awaiting calprotection levels. Calprotection levels: normal

Current Meds
Azathioprine 50mg
Allopurinol 100mg

Been on
Azathioprine 50mg x3
Humira April-August 2010
Prednisone October 2009-July 2010
Folic Acid
Multi Vitamins
Calcium 2500g
Vitamin D
Ranitadine 2x 150mg
B12 injection
Ciprofloxacin 500mg
10-11-2011, 01:16 AM   #2
CD041491
New Member
 
Join Date: Sep 2011
Location: Louisville, Kentucky
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
10-11-2011, 01:31 AM   #3
Becca1991
Senior Member
 
Becca1991's Avatar
 
Join Date: Apr 2010
Location: Christchurch, New Zealand
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
10-11-2011, 01:38 AM   #4
Slim Johnson
Senior Member
 
Slim Johnson's Avatar
 
Join Date: Oct 2011
Location: Salt Lake City, Utah
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.
__________________
Don't assume my posts are about you. But if you are affected, that must mean you are guilty of something.
10-11-2011, 01:41 AM   #5
CD041491
New Member
 
Join Date: Sep 2011
Location: Louisville, Kentucky
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
10-11-2011, 01:43 AM   #6
CD041491
New Member
 
Join Date: Sep 2011
Location: Louisville, Kentucky
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!!
10-11-2011, 01:49 AM   #7
Slim Johnson
Senior Member
 
Slim Johnson's Avatar
 
Join Date: Oct 2011
Location: Salt Lake City, Utah
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.
10-11-2011, 01:53 AM   #8
CD041491
New Member
 
Join Date: Sep 2011
Location: Louisville, Kentucky
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
10-11-2011, 02:04 AM   #9
Slim Johnson
Senior Member
 
Slim Johnson's Avatar
 
Join Date: Oct 2011
Location: Salt Lake City, Utah
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.
10-11-2011, 02:11 AM   #10
CD041491
New Member
 
Join Date: Sep 2011
Location: Louisville, Kentucky
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
10-11-2011, 02:18 AM   #11
Slim Johnson
Senior Member
 
Slim Johnson's Avatar
 
Join Date: Oct 2011
Location: Salt Lake City, Utah
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.

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...
10-11-2011, 02:23 AM   #12
CD041491
New Member
 
Join Date: Sep 2011
Location: Louisville, Kentucky
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
10-11-2011, 02:51 AM   #13
Slim Johnson
Senior Member
 
Slim Johnson's Avatar
 
Join Date: Oct 2011
Location: Salt Lake City, Utah
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. ; )
10-11-2011, 07:50 AM   #14
CD041491
New Member
 
Join Date: Sep 2011
Location: Louisville, Kentucky
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


10-11-2011, 01:15 PM   #15
Slim Johnson
Senior Member
 
Slim Johnson's Avatar
 
Join Date: Oct 2011
Location: Salt Lake City, Utah
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!
10-12-2011, 01:00 AM   #16
Becca1991
Senior Member
 
Becca1991's Avatar
 
Join Date: Apr 2010
Location: Christchurch, New Zealand
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
10-12-2011, 02:44 AM   #17
Slim Johnson
Senior Member
 
Slim Johnson's Avatar
 
Join Date: Oct 2011
Location: Salt Lake City, Utah
Sorry to hear about your friend, sounds like he had it bad
Indeed. I miss him very much.
10-12-2011, 03:52 AM   #18
Becca1991
Senior Member
 
Becca1991's Avatar
 
Join Date: Apr 2010
Location: Christchurch, New Zealand
Did he have Crohns?
10-12-2011, 04:49 AM   #19
Slim Johnson
Senior Member
 
Slim Johnson's Avatar
 
Join Date: Oct 2011
Location: Salt Lake City, Utah
Did he have Crohns?
Yeah, he was diagnosed at 18. It was one of those "Looks like appendicitis..." sort of discoveries. He woke up missing his Ileum. 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..

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..
10-12-2011, 05:47 PM   #20
Becca1991
Senior Member
 
Becca1991's Avatar
 
Join Date: Apr 2010
Location: Christchurch, New Zealand
Yeah, he was diagnosed at 18. It was one of those "Looks like appendicitis..." sort of discoveries. He woke up missing his Ileum. 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..

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..
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.
10-12-2011, 06:15 PM   #21
Slim Johnson
Senior Member
 
Slim Johnson's Avatar
 
Join Date: Oct 2011
Location: Salt Lake City, Utah
Thats so sad what did he die of if you wouldn't mind me asking.
He committed suicide the same day he was to have the aforementioned boil removed/lanced. It was very unexpected.

The last note he left us was:

"What is the definition of insanity?"
10-13-2011, 01:28 AM   #22
Becca1991
Senior Member
 
Becca1991's Avatar
 
Join Date: Apr 2010
Location: Christchurch, New Zealand
oh that is so sad, must have suffered alot and couldnt take it anymore
10-13-2011, 02:29 PM   #23
Slim Johnson
Senior Member
 
Slim Johnson's Avatar
 
Join Date: Oct 2011
Location: Salt Lake City, Utah
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.

Thank you all for the mutual support!
10-13-2011, 05:26 PM   #24
IslandArts
Member
 
Join Date: Sep 2011
Location: Bermuda
Know you're never alone Slim. This forum has been such a great find for me too.
10-14-2011, 10:59 AM   #25
dragonfly
 
Join Date: Jul 2011
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!
10-14-2011, 11:17 AM   #26
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
I came across this when reading about Vitamin B12 the other day.

Thought some of you might be interested
10-14-2011, 03:05 PM   #27
crohnewbie
New Member
 
Join Date: Oct 2011
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.
10-14-2011, 04:33 PM   #28
dragonfly
 
Join Date: Jul 2011
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!
10-14-2011, 04:52 PM   #29
Miss Underestimated
Senior Member
 
Miss Underestimated's Avatar
 
Join Date: Mar 2011
Location: Norfolk, Virginia
I came across this when reading about Vitamin B12 the other day.

Thought some of you might be interested
That is very interesting! You never know about vitamins. I avoided taking vitamin D because, until recently, it was considered dangerous to take much of it.
10-16-2011, 12:12 AM   #30
Slim Johnson
Senior Member
 
Slim Johnson's Avatar
 
Join Date: Oct 2011
Location: Salt Lake City, Utah
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...
Reply

Crohn's Disease Forum » Extra Intestinal Manifestations » Skin » Anyone suffer from hidradenitis suppurativa
Thread Tools


All times are GMT -5. The time now is 10:53 AM.
Copyright 2006-2017 Crohnsforum.com