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


 
12-04-2011, 05:05 AM   #31
jessyy21
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Join Date: Dec 2011
Location: chicago, Illinois

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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.
08-19-2012, 10:53 PM   #32
dragonfly
 
Join Date: Jul 2011
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*[email protected] 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!
10-16-2012, 07:25 AM   #33
Sbear
 
Join Date: Sep 2012
Location: Saskatchewan
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.
10-16-2012, 08:03 AM   #34
PhoenixBird
 
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Join Date: Oct 2012
Location: Auckland, New Zealand

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Yes, mine worsened the year I was diagnosed with UC. Go figure, I'm sure it's all related somehow.
12-01-2012, 01:13 AM   #35
CatherineLyn
 
Join Date: Nov 2012
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!!
12-01-2012, 04:43 PM   #36
dragonfly
 
Join Date: Jul 2011
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!!
06-20-2016, 08:05 PM   #37
Ghr
 
Join Date: Jun 2016
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
06-29-2016, 01:38 PM   #38
Miss Underestimated
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Join Date: Mar 2011
Location: Norfolk, Virginia
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.
__________________
*Sick since 1987; managed on my own;
*diagnosed 2008 when I underwent emergency surgery;
*various meds and tests 2008-2012,
*Jan 2012-present, Humira. No symptoms, but scopes indicated disease.
*6MP for all of 2013.
*2014 &2015 complete mucosal healing.

**Staying on Humira for maintenance**

The statistics I see so far for my situation seem pretty good. There ARE long term statistics for the Anti-TNF drug treatments now. I'm here to make them longER.
06-30-2016, 07:06 AM   #39
InstantCoffee
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Join Date: Dec 2012
Location: Connecticut

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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?
__________________
Dx 05
Past drugs: Remicade, Azathioprine, Prednizone, antacids, Humira
Current therapy: Diet and supplements.
I'm my own guinea pig.
My log with studies, journal of my experiments:
http://www.crohnsforum.com/showthread.php?t=72046
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https://beyondtheoddsfitness.wordpress.com/
09-05-2016, 07:18 PM   #40
Cb0708
 
Join Date: Sep 2016
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 ...
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