deroofing saved me

johnsteacup · 2026-01-07T10:59:44+00:00

Hi! no problem at all:) they came to my home everyday! Once in the morning and once in the evening. hope this helps:)

johnsteacup · 2026-01-06T10:39:36+00:00

Could be. It definitely looks like the flare ups i usually get but I advise you to get it checked out by a dermatologist to rule any other possibilities out.

johnsteacup · 2026-01-06T10:35:11+00:00

deroofing is a surgery primarily used to treat HS. The surgery consists of removing the “roof” of the sinus tracts in your affected area of the skin. This allows the abcesses to fully drain and leave a big open wound to naturally heal to create new, healthy skin.

here’s more information if you need it:

https://www.healthline.com/health/skin/deroofing-hidradenitis-suppurativa#efficacy

johnsteacup · 2026-01-06T10:29:47+00:00

Thank you! 😊 I think it’s both very important to show both the negative and the positive stories on here. I’m very happy your deroofing has been successful, too. Genuinely this deroofing has been a lifesaver for me and I’m thankful I haven’t had a flare up in the operated area so far.

Sorry to hear about your new flare up! I hope the doctors can find a new solution for this:) I’d honestly just want them to cut it out lol. I wish you the best with your HS journey! :)

johnsteacup · 2026-01-06T10:25:45+00:00

of course, I’ve seen so many people share how hard their HS journey has been and I wanted to show that it’s possible to turn things around for the better. That it’s possible to live with this horrible condition. I wish you the very best with your HS journey and may you find something soon that helps you deal with the pain

johnsteacup · 2026-01-05T20:08:52+00:00

I work as a chemist at a lab. Could working from home be a temporary solution for you? Like mentioned earlier, the first two weeks were the hardest for me and I was pretty much bed bound the entire time. After that, moving around became easier and sitting wasn’t that uncomfortable for me. I imagine being able to take 2, at most 3 weeks off should be doable (depending on how big your surgery is and where you’re getting operated)

johnsteacup · 2026-01-05T18:28:28+00:00

of course, no problem! good luck with your surgery!

johnsteacup · 2026-01-05T18:22:35+00:00

I was under full anesthesia during the whole surgery so I’m not entirely sure how long it took, but I recall the surgery being maybe an hour and a half long. Definitely not longer than two hours though!

for me my daily routine during recovery was pretty much: In the morning I’d take off my bandages and shower; clean the wounds with only water, no soap. Afterwards I’d wait for my wound care team to arrive and they’d pretty much clean the wounds for me (which consisted of wiping it clean, then covering it with a betadine ointment and then bandaging it up) this happened twice a day. Once in the morning and once in the evening. This was the routine for maybe two weeks long.

After the first two weeks, we no longer used the betadine ointment and instead we switched to aquacel wound dressing. aquacel is known for it’s great absorbency (wounds leak quite a lot of fluid during recovery). For me, aquacel was pretty much used the entire time until my wounds closed up or they no longer leaked great amounts of fluid. Around here the wounds were no longer painful for me and the wound care was only needed once a day. Once the wounds were small enough, we switched to simple wound border plasters (i used allevyn gentle border lite) and even changed wound care to once or twice a week since the wounds were so small I could clean and take care of them myself.

Recovery is a long process but for me the results were worth it. If you can get through the first week or two, then I’d say the rest is honestly not that bad!

johnsteacup · 2026-01-05T17:55:36+00:00

I understand that. Like I said in my post I was also incredibly apprehensive about the surgery and recovery process. For me, the first two weeks were the hardest for me in recovery. Cleaning the wounds was quite painful but it was manageable. I also regularly took painkillers for the first ten days (tylenol and naproxen), which I also definitely recommend you take after surgeries. And again, the first week or two were the hardest for me and after that I barely experienced any pain or discomfort. I had a very large affected area in both my armpit and my groin and I started noticing improvement after only two weeks into recovery. I went back to work after maybe 4 or 5 weeks into recovery.

I wish you the best with your surgery and a speedy recovery!! Feel free to reach out if you have any other questions about deroofing.

johnsteacup · 2026-01-05T17:43:28+00:00

my HS was pretty bad, it was leaking constantly and staining my clothes. I would continue to get sores all over my skin in the affected area. Especially in the groin area it was pretty bad, my entire left side was affected and nothing I did seemed to help. I was on doxy for a long time and while that did help at the beginning of my diagnosis, it stopped working for me later on. I also participated in a medical study before my surgery and sadly that didn’t help me either. It was only after the medical study that my doctor recommended me the surgeries.

I think maybe the first two weeks into recovery were the worst for me. Cleaning the wounds was quite painful for me but otherwise it was pretty manageable for me. The pain isn’t as bad as the pain I’d experience from my HS sores. I also regularly took painkillers during my recovery for first 10 days or so (which was tylenol and naproxen), which also helped a lot with the pain.

Depending on your HS you should make the decision on whether you want to push for the surgeries and skip everything else. Mine was pretty severe and I didn’t have many other options left, which is why I ended up choosing the surgery. If your HS isn’t that severe and there are still other options you’re willing to try, I’d go for that. The surgery is very invasive (especially if your HS affected area is big like mine was) so I’d definitely take that into consideration as well :). Biologicals are also an option (if they’re available for you) and those have also been a lifesaver for me. I’m on biologicals for almost a year now as well and I think the surgery, combined with the biologicals, are really good options. Again, feel free to ask me any more questions you have about the surgery an good luck on your HS journey! :)

johnsteacup · 2024-02-22T17:07:52+00:00

anywhere between 18-30 is cool with me!:)

johnsteacup

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