Hidradenitis Suppurativa pus and blood.
December 9th, 2015 at 02:00
Hi Carlo. I have been reading your posts for several years now. I pray you find relief and total healing. You deserve it. I was wondering if you have tried Humira? I have had H.S. for 14 years and it has become worse over past year. I have been on Humira for 2 weeks and all 10 of my cysts have dried up! Also, I was at a point where I was waking up with 2-3 new ones everyday and I haven’t had any new ones form since I began injections. I will keep you posted as I go on with the treatment. Best of everything to you.
December 9th, 2015 at 02:40
Hello thank you so much for following me it truly means the world to me. Yes I’ve been on it Doc weeks. No major changes yet but I’m still hopeful. If you can I finally started a Facebook for H.s. Please give it a like. I’m always on updating. https://www.facebook.com/hshelpnow/ Thank you again. Carlo
December 10th, 2015 at 08:30
Hi there!! I have a question for you. I too have had HS for almost 40 years. What I don’t do is squeeze my sore if it’s not yet got a “head”. I am more patient and wait. I too have underground channels and sometime it may take 5 days for the sore to be ready to pop. I use heat & neosporin until either I get a head to pop or the sore recedes back into my system. I use nepsporin on all my sores no matter what stage. I just worry your violent squeezing is making it worse. Just a thought. Warmest, Darla
December 22nd, 2015 at 13:18
My name is steve. I have been suffering from hs for about 6years. You are the first person that I have seen to have it as bad as I have it. I have it on both my hips and both sides of my groin with tunneling and has been impossible to get a break from the pain and flare ups. I am also parapalegic and in a wheelchair and have had a very active life until now I even played professional wheelchair tennis until about 6 months ago. It has gotten so bad that if I try to do too much that I end up having to stay in bed for days afterwards because of the flare ups. Been to Dr with no real help done research endlessly with very little positive results. Hope that humira starts to help you because if it helps you I’ll try it. With my hs the tunneling is the biggest problem because it is impossible to get the wounds to dry out together. I have had one in my underarm and was able to get rid of through cutting out nightshades and laying in the sun for a hour a day for six days. I also take zinc 100 mg a day tumeric 1000 mg a day. Don’t know what exactly cleared up my armpit but suspect it was the sun since where I get the boils are places that don’t sun and it hadn’t tunneled yet. I am going to start trying to get sun on the cysts that have tunneled I hope to have some success. Fortunately for me I live in florida plenty of sun and I still have hope that it can get better. For people who have stage 3 or worse we know no relief but still stay positive and those who don’t suffer frm hs will never know or be able to sympathize because they think that the dr can fix it but they can’t fix it and ignorance is bliss. I don’t do facebook so if you want to contact me just email me.
December 22nd, 2015 at 22:08
Thank you for sharing my friend. Merry Christmas.
December 29th, 2015 at 15:27
Was googling my skin condition as dr haven’t been helpful. .. after seeing your pics i know what i will be asking them to check for
January 2nd, 2016 at 04:18
I’m happy I stumbled onto your page. You are so brave to share your story and it puts my pain into perspective. Having an “invisible” disease is frustrating. People look and think we look just fine so what’s our excuse. I hate thinking others think I’m lazy. I’ve always been a workaholic until the last couple of years – but now I’m lucky to have a good day where I can do some chores and supper. I liked and shared your Facebook page. I wish you all the best.
January 2nd, 2016 at 04:20
Hello thank you so much.
January 2nd, 2016 at 15:13
I use a chickweed and plantain blend from a natural shop which helps take away the heat and reduce the redness
January 4th, 2016 at 09:00
I started getting them during my pregnancy. I figured my immune system was overloaded or something. Didn’t know what it was. I accidentally stumbled upon Evening Primrose oil. It didn’t cure it, but kept the inflammation under control more or less. But the most striking benefit was taking 90% of the pain away. I take it every day and it’s been much more manageable.
January 6th, 2016 at 04:27
I was looking up info on psoriasis which I have there is no cure just a few things to relieve the thick and itchy skin. My skin reprodues 10 faster than normal skin.
I wanted to share my story of skin problems. May God bless you .
January 6th, 2016 at 04:28
January 8th, 2016 at 03:53
Hi, Sorry for your condition. As a nurse I have seen some clients have use diapers over areas with lots of draining conditions/wounds. It pulls the wet away from your skin, gels it, and doesn’t need all that irritating tape- no matter what tape you use it will eventually irritate your skin- as you know. One guy taped some around his legs the drainage was so much. No leakage like with abdominal pads/cotten batting. If you are Canada side the government usually covers chronic wound products, in Alberta we pay for all wound products for clients. Good luck.
January 8th, 2016 at 04:25
Thank you. Diapers do not work for me at all. It bleeds way more than they can handle. Within two hours it’s pouring out the sides all over my clothes. Diapers also do not hold in the smell. For me the way I do it is the only way that works. Tried every tape, sponge, diaper, pad you name it I’ve done it. I have three different tapes I use. I rotate them this way skin irritation will never occur. It has now been 28 years since I’ve been doing this. Thanks again for reading my blog and taking time to post. It truly means allot to me.
January 8th, 2016 at 21:06
As i was searching through YouTube i saw your “vent” about your hs and that people don’t believe you, I almost cried. I’m 36 and I’ve been living with hs for about 9 years. It’s now in stage(Hurley) 3 for about 4 years. I feel your pain. It’s such a painful disease (in the top 10 of most painful diseases) and that’s not it. All the bandages and draining, the smell, the explaining to new people and most of all: it’s life changing. My 4 years of fighting has been terrible. Then I heard your story, 27(!!!!!) years. If only I could describe how much respect I have for you and I don’t even know you. Maybe it’s good if we swap ideas about painkillers, other medicine and bandages. 5 times a day is not acceptable. You can contact me if you like. (firstname.lastname@example.org). Let’s help each other out. I’m Dutch so I’m sorry if my English is not that good. If you don’t want to contact, it’s okay, no worries. It’s good to see you spreading the word. Keep it up.
All the best
January 8th, 2016 at 21:21
Dave thanks so much my friend. Also man please join me here https://www.facebook.com/hshelpnow/ love to talk more.
January 9th, 2016 at 00:14
I don’t use Facebook sorry. I just saw more of your videos. What interests me is that you have to change bandages every 4 hours. What type of bandages do you use? And what kind of tape? I think we have the same amount of stuff coming out of our body and in the same areas and use use really good material so twice a day is my max. I don’t work for a bandage company, just wanna help you.
January 11th, 2016 at 05:22
I’ve just come across some of your videos. My father has a disease which causes him chronic and constant pain, and I see how it wears on him. Please know, from the bottom of my heart, I am sorry you have to live with hs. I can see it affects your life and your happiness. No one should have to suffer like that daily. It sucks and it’s not fair. So just know, I’m thinking about you and wishing and hoping you find relief and happiness.
January 11th, 2016 at 05:24
Thank you so much. Those kind words mean the world to me.
February 7th, 2016 at 19:41
Hey, as a HS person i really feel your pain. Im 20 years old female and was diagnosed when i was 19. but my HS really started when i was younger. I’m not really sure the age because it was minimal. it first stated as a little lump on my groin. that would swell/expand then eventually pop. that would always come back every few months. i would never tell a soul about it tho. i felt scared to tell people because i was ashamed and i didn’t want to be judged. so i never spoke about it. and since it was only happening every few months i didn’t think it was a problem. until it got worse and it became 2 lumps or 3 in the same area. i had one abcess, literally expand to the size of a tennis ball. it was so tender/sore/swollen i had to get a home doctor to come and lance it. anyway. i finally went to the doctors because they weren’t going down infact more kept showing up and at one point i had 4 swollen abcess lumps on my groin. they wanted to do surgery. which being 19 at the time i didn’t want so i was put on iv antibiotics and soon they all went. but after leaving the hospital not even a week or so later they stated showing up again. at this point i was very down emotionally, even writing this brings back how i feel/felt. so i started taking copious amounts of top strength antibiotics, i was going threw a box or so a week for week’s. and it would heal them but they would eventually come back. so i quit smoking, signed up to a gym (to lose weight). i bought different tropical ointment, you name it, i would of tried it. and nothing would work. because the lumps would always come back. i was giving up. so i started reading other peoples stories about what worked for them as a natural remedy. i read about comfrey leaves and how its a great natural remedy. i went and brought a tropical creme and when i could feel one starting i would slather it 5-10 times a day with the creme, and it would 100% work for me they would go away after a day or two. so i finally had some hope and finally found something that may actually work. (we’re all different so not everything works for the same people as others) Anyway even tho the creme was stopping them for turning into the huge puss lump. it still bothered me that it was still happening, the flare ups. i was again feeling helpless. because even tho the creme works on the lumps in my groin it doesn’t work on the lump under my breast. (the groin and under my breasts are the main flare up sites) I tried everything my “doctor” had recommended, (thats another thing I’ve seen 10+ doctors about this, only 3 new what it was) so i decided to try again to find a “cure”. so going back on the blog where i discovered the comfrey creme, there was a story about how your diet has a huge play into this disease. I read about night shade vegetables and how to some people they can be poisonous. so being at wits end i had to try it. i had to try something different because what i was doing wasn’t working. so i cut out all night shade veg. the blog said try it for 60 days then reintroduce it back into your diet to see if you flare up. well since quitting nightshades (which i quit mid dec and it now being start of feb) i have noticed a huge change. especially under my breast. my breast had 5-6 open wounds on each breast that were constantly swelling and then bursting with blood and pus. since quitting nightshade (and honestly thats been a real challenge since two main nightshades are potatoes and tomatoes) but since quitting I’ve only had about 3 flare ups, which has been under my breast. so I’m optimistic about this.. and will post what happens in the next coming months on the blog where i found the idea. anyway my point being no matter how hard this is for me i won’t give up. and seeing videos of total honestly about this disease gives me hope. and makes me feel a little less alone. i like your videos because your real and raw about it you don’t sugar coat it. this disease straight up sucks. and the pain. oh gosh the pain. 😦
Anyway i read somewhere that 1 in 100 people have HS but no one is willing to talk about it out of fear. And i get why no one wants to talk about it. and honestly i won’t put my name on this out of fear.
But dude i have to commend you for your bravery. and i feel your pain, i would say I’m stage 1 almost stage 2. and i cry like a baby for days on end about it and hide away from the world because i cant deal with it. but you, your standing up. the more we talk about hs and spread the word and share what works for us or what we’ve tried. the closer we are to finding a cure…
sorry about the long comment but i don’t have anyone to talk to about this.
your a good guy.
February 13th, 2016 at 19:01
I really feel for you! Did you stop you tube comments because of assholes making rude statements? I will try to give my support, you’re very brave to post these videos! I hope someday they find a cure!
February 14th, 2016 at 01:17
No my comments are still open. I just deleted idiots.
July 3rd, 2016 at 14:28
Hello I would like to say thank you for doing this video!!!great job 😎 I myself can relate with you.I I’m 43and have been suffering since 13. The first one appeared.Omg help us who suffer.I’m done trying this pill and that one to off set the other one !nothing help’s! Me! People judge me for something that I don’t have control over! I’m in stage 4 and haven’t found a Dr who knows what there talking about.II suffer! I’ve been in nursing for over twenty year’s and don’t like going out to hospitals!As long as I have someone to help me with hot. Towels in out of tub gauze pads everywhere sucks it is definitely debilitating moving with a golf size lump,bump on your body filled with green puss and.clear shit “sweat ” I would love to chat privately with the man who made this video. Thanks again.
September 11th, 2016 at 16:06
Man, I have never seen anybody this honest about HS. I really, really feel for you. I have HS. Lost my job because of it, but I am “only” in stage II. I can’t imagine the pain you must be going through. I just don’t know what to say. I gave your fb page a like. I will support you in any way I can. Hang in there.
September 11th, 2016 at 16:56
Thank you so much for the kind words.
September 11th, 2016 at 18:04
Hi Carlo. It’s hard to see you struggle like this. Any new stuff yet? I would love to get in contact with you. Maybe we can share ideas and tricks to make our (or just your) life just a bit easier. I don’t use Facebook but maybe we can use email. Up to you.
All the best
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