I just had my first surgery

Posted , 7 users are following.

Hi guys, I've just been recently diagnosed with HS this past week. I've been having issues since I was 17, I'm now 24. The first spot was under my arm, it tunneled to my arpmit then comfortable made it's way to my breast. I would have flare up's every August but this year after it was drained after my flare up, it never went away. It would start going away & then open back up. I just had surgery on the 27th of December and the healing process is stealing my spirits. My doctor told me that it is more than likely going to come back and that I'll need to do a skin graft, that sounds terrifying to me. I'm just starting to learn the do's and don'ts of this disease. 

Is there any tips I should know?

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  • Posted

    Sorry to here that it sounds like your going threw it .this may help just thought I'd share .my daughter has hs and she had alergie testing also vitamin and minerals test .this showed that she was dairy intolerant also needed magnesium. She also found out that she has candida since treating this and eating a palo diet she is almost free and feels so much better. I hope this helps and wish you well !

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  • Posted

    Hiya! I feel ya, diagnosed at 19 and now I'm 22 (but had it since I was 16).

    I just had bilateral underarm surgery- both at once. No skin graft for me (your dr generally can't call those things, surgeon decides on skin graft or open wound packing). Took 4 months to completely heal, but my god it was worth it! (I had open wound packing).

    I'm trying to avoid a groin surgery now. No thanks!

    But I've found that turmeric helps, so many people who suffer this swear by it. I'd grab a turmeric supplement and a zinc supplement. Both aid so much in flare ups. I just started a few days ago and have noticed a difference.

    Salt baths also help, soaking your wounds in the salt sterilises them and does so many things to help! Even if it's just 20 mins, shove some salt in your bath if you have one and soak in it.

    A lot of people find dietary links to their flare ups. Nightshades and dairy seems to be the main culprits. Some people have food sensitivities to these and have found that by cutting them out completely that their flare ups ceased. (The elimination diet is the way to find this, going paleo and introducing food groups into your diet one by one).

    If you smoke, it's always good to cut back. I find I flare up worse when I smoke more (coincidentally, tobacco is a nightshade).

    Avoid humidity, sweating makes it worse and hot temperatures. I find that showering off when I've sweat a lot helps too.

    I've found that the way my cysts have stopped coming back is from surgery where they remove not only the cysts, but the skin and the glands too. I've had no reoccurrences under my arms since the surgery in June 2016. The surgery process was long and daunting at times, but I can move my underarms with full range and wear tank tops for the first time in years! And they resemble normal armpits (Exception of scars but they look cool as)! Much better than before.

    If you're going surgery route and would like advice on that, let me know and I'll give you all of the tips I wish I'd known before my surgery.

    Best of luck!

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    • Posted

      I use Thorne zinc pilconate 15mg. Zinc pilconate is more absorbable in our bodies than just zinc. More effective.

      I just eat a regular diet, nothing particularly changing or out of the ordinary.

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    • Posted

      Hi lillyyyy1113, I recently just had surgery the same as you bilateral arm surgery on both and my surgeon removed my stitches but on one of my arms my skin opened back up and I'm currently doing a wet to dry dressing on it. But I was wondering were you in a lot of pain during your healing process? I am, and I'm afraid I'm never going to get better but my surgeon keeps telling me to have patience and it will heal on its own.

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    • Posted

      Hi Victoria!

      If you're not connected with a wound clinic, I'd call around and see if you can find one to help you with dressings! They're amazing!

      It took 4 months for my underarms to completely heal. They both reopened for me and had to have wound packing. Healing time varies for different people.

      The pain wasn't nice, however each week it did get better. I found it easier to sleep upright with a pillow fort haha. It's a horrible surgery, I feel for you, but just know in the end it will be worth it. I've not had a single reoccurrence since, and I can move my arms completely and properly!

      Hang in there! Your surgeon is right- it will get better!

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    • Posted

      Thanks for replying Lilly I really appreciate it. Thanks for the advice, right now when I sleep I sleep on my back with pillows under my arms for support. We're you prescribed medication for the pain? I am currently but I find that when I change the dressings they kind of get stuck to the wound and that's what really hurts but I hate having to push through the pain to take them off.

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    • Posted

      Definitely was on pain medication. I was on Endone 5mg to take when required as well as Targin, 10/5mg. They eventually upped the dose to targin 15/7.5 because the pain got pretty bad when my nerve endings reconnected. Your surgeon/gp should be more than happy to prescribe you pain medication if you aren't on any. It's a major surgery that does come with pain.

      I eventually stopped taking endone/targin because after 3 months I was becoming addicted to it and didn't want that and the pain was significantly less. I moved onto panadeine forte for the last month and then it got better!

      Try wetting the dressings with saline before removing them or doing it in the shower-it helps!

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    • Posted

      Just read that you are in pain medication! That's good! Take your pain medication 15 mins before wound changes, and definitely talk to your dr about getting stronger ones if you need to. I did dread wound dressing changes, they did get more bearable after a couple weeks though

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  • Posted

    Hi, I'd just add my endorsement to what others have suggested here, it's all good advice.

    ?My own condition responds to a dairy free diet. It doesn't get rid of it, but it keeps it under control. as soon as I start eating dairy in any quantity it flares up again. I'd suggest cutting out dairy, see if it has any effect, if not then you'll know that's not the culprit. Then try cutting out nightshades.

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  • Posted

    I stay in remission from HS as long as I don't eat my food sensitivities which are nightshades, coconut and nuts. The smallest bit will ruin my remission so I'm very strict with my diet. I had stage 3 and for 10 years. Try an elimination diet to find your food sensitivities! Good luck!

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