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


 
12-30-2012, 10:22 PM   #31
JohnnyRottenAppleseed
Senior Member
 
Join Date: Oct 2011
Location: Colorado
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 .
01-06-2013, 05:09 AM   #32
VJK
 
VJK's Avatar
 
Join Date: Jan 2013
Location: London, United Kingdom
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?
02-02-2013, 12:29 AM   #33
Neecka
 
Join Date: Feb 2013
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
03-04-2013, 11:05 AM   #34
blee0121
 
Join Date: Aug 2012
Location: Steubenville Ohio
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.
__________________
Proud mother of a crazy awesome little boy
Diagnosed April 2011
Crohns disease and ulcerative colitis
Pentasa-didnt work
Bacterial overgrowth (stopped crohns meds to treat it)
Not on any other meds yet.
Love and health to all <3 Britt
03-04-2013, 12:09 PM   #35
JohnnyRottenAppleseed
Senior Member
 
Join Date: Oct 2011
Location: Colorado
My armpit was just a boil and NOT HS. A dermatologist can tell you for sure. It's probably just a boil.
05-10-2013, 09:42 AM   #36
Christie
Senior Member
 
Join Date: Feb 2011
Location: leeds, United Kingdom
omg I was diagnosed with this 2 days ago and I was terrified, I have had Crohns for 20 years and now this!!
05-10-2013, 11:58 AM   #37
JohnnyRottenAppleseed
Senior Member
 
Join Date: Oct 2011
Location: Colorado
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.
05-11-2013, 10:54 PM   #38
dragonfly
 
Join Date: Jul 2011
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?
06-11-2013, 08:07 AM   #39
mish2575
Senior Member
 
mish2575's Avatar
 
Join Date: May 2013

My Support Groups:
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.
06-11-2013, 08:47 AM   #40
dragonfly
 
Join Date: Jul 2011
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!
06-11-2013, 09:20 AM   #41
mish2575
Senior Member
 
mish2575's Avatar
 
Join Date: May 2013

My Support Groups:
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.
06-11-2013, 10:13 AM   #42
JohnnyRottenAppleseed
Senior Member
 
Join Date: Oct 2011
Location: Colorado
Those suffering HS symptoms. What meds are you on?
06-12-2013, 02:30 PM   #43
mish2575
Senior Member
 
mish2575's Avatar
 
Join Date: May 2013

My Support Groups:
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).
06-12-2013, 02:38 PM   #44
JohnnyRottenAppleseed
Senior Member
 
Join Date: Oct 2011
Location: Colorado
I meant what Crohn's meds
06-12-2013, 02:57 PM   #45
mish2575
Senior Member
 
mish2575's Avatar
 
Join Date: May 2013

My Support Groups:
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.
06-12-2013, 03:40 PM   #46
JohnnyRottenAppleseed
Senior Member
 
Join Date: Oct 2011
Location: Colorado
I haven't had an since I went OFF Lialda and 6mp.
06-12-2013, 05:44 PM   #47
mish2575
Senior Member
 
mish2575's Avatar
 
Join Date: May 2013

My Support Groups:
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.
06-12-2013, 06:23 PM   #48
JohnnyRottenAppleseed
Senior Member
 
Join Date: Oct 2011
Location: Colorado
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.
06-20-2013, 09:20 PM   #49
dragonfly
 
Join Date: Jul 2011
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.
06-24-2013, 05:01 PM   #50
silvermander
Senior Member
 
silvermander's Avatar
 
Join Date: Feb 2011
Location: Winthrop, Maine

My Support Groups:
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.
__________________
30+ years of Crohn's Disease and many strong opinions.
Diagnosed - Age 8, 1981
Small Bowel Resections - 6 - had a fistula and 6X8 abscess, as well as some small bowel removed - 9/2/11
New abscess, named Albert! 7/7/12
Prednisone - Way too much & never again!
Cimzia - Started 5/20/11, hoping for the best. Scared that it won't work, like everything else.
Humira/Remicade/Imuran/6MP/Flagyl/ect - Been there, done that & really should get the t-shirt!
06-25-2013, 08:46 AM   #51
dragonfly
 
Join Date: Jul 2011
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 [email protected]*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.
06-26-2013, 05:33 PM   #52
silvermander
Senior Member
 
silvermander's Avatar
 
Join Date: Feb 2011
Location: Winthrop, Maine

My Support Groups:
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!
06-26-2013, 06:03 PM   #53
JohnnyRottenAppleseed
Senior Member
 
Join Date: Oct 2011
Location: Colorado
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...?
06-27-2013, 03:51 AM   #54
Christie
Senior Member
 
Join Date: Feb 2011
Location: leeds, United Kingdom
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
06-27-2013, 02:06 PM   #55
mish2575
Senior Member
 
mish2575's Avatar
 
Join Date: May 2013

My Support Groups:
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.
06-27-2013, 02:16 PM   #56
mish2575
Senior Member
 
mish2575's Avatar
 
Join Date: May 2013

My Support Groups:
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.
06-27-2013, 02:30 PM   #57
JohnnyRottenAppleseed
Senior Member
 
Join Date: Oct 2011
Location: Colorado
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.
06-27-2013, 03:01 PM   #58
mish2575
Senior Member
 
mish2575's Avatar
 
Join Date: May 2013

My Support Groups:
You could be on to something then, as we all know each person's disease is different.
06-27-2013, 09:39 PM   #59
dragonfly
 
Join Date: Jul 2011
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!
06-30-2013, 11:43 AM   #60
slb815
 
Join Date: Jun 2013
Location: West Virginia
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!
Reply

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


All times are GMT -5. The time now is 09:15 AM.
Copyright 2006-2017 Crohnsforum.com