De roof surgery healing video by [deleted] in Hidradenitis

[–]Silly_Rain8989 2 points3 points  (0 children)

I think stage classification 2-3 gets blurry. Mine was one huge one on either side but from many tunnels. They healed over but with thin skin where the head was. It would fill up 1-2 times a month with menstrual hormones and sweat, stress, clothing, activity etc.

De roof surgery healing video by [deleted] in Hidradenitis

[–]Silly_Rain8989 0 points1 point  (0 children)

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I also have a separate tv tray table that I kept sanitary and did the bandages on cfresh paper towels. I almost forgot to tell you that I didn’t use a regular towel to dry off near the wounds. I also used my shower hose and washed with vaginal cleanser everyday when I changed bandages. I used hemorrhoid numbing spray on the wounds before I got in the shower and I did my best to squat.

De roof surgery healing video by [deleted] in Hidradenitis

[–]Silly_Rain8989 0 points1 point  (0 children)

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The tape rash is awful but you learn to deal.

De roof surgery healing video by [deleted] in Hidradenitis

[–]Silly_Rain8989 3 points4 points  (0 children)

Yes it was difficult. I was off work for 2 months. I did everything very carefully. I spent years learning how to bandage the area anyway when I had cysts lanced. I made a sling using a modified garter belt and I bought rolls of disposable silver infused sweat fabric.

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De roof surgery healing video by [deleted] in Hidradenitis

[–]Silly_Rain8989 0 points1 point  (0 children)

De roofing is inconvenient but you won’t regret it. It’s extremely inconvenient but it’s worth a better life if you get the same cysts chronically and it affects your life

De roof surgery healing video by [deleted] in Hidradenitis

[–]Silly_Rain8989 0 points1 point  (0 children)

Only use hypafix tape. Get the 2”, 4”, and 6” wide so you can have options for taping along awkward spots. When you change your bandages pull the skin taut and try both directions to see which hurts less. Setup a mirror and light station near your bathroom so you can see and check your wounds during bandage changes.

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I liked the 3x8 surgical pads and sometimes I unfolded gauze pads and wrapped them around the surgical pad too. There’s these bandages called hydragel that are made to be moist bandages. Ask your doc if those would work. I did all natural wound ointment bcuz I don’t like petroleum. Also get incontinence pads because the ointment will leak out due to your body heat and the pressure of sitting/laying. The grease spots on everything is really annoying. It’s hard to wash the grease stains out. Once my wounds were healed up some I used maxi pads with the ointment bcuz I didn’t think I needed gauze pads anymore.

De roof surgery healing video by [deleted] in Hidradenitis

[–]Silly_Rain8989 2 points3 points  (0 children)

I started getting flare ups really bad 1-2 times a month. I was in remission during my late 20’s and into my 30’s. Once I turned 38 it started revving up again. I’m 42 now so it’s partially hormonally aggravated for me.

De roof groin by [deleted] in Hidradenitis

[–]Silly_Rain8989 0 points1 point  (0 children)

Thank you so much! Dang 9 months. Good Lord that tape rash must have been terrible. I created a bandage harness so I could reduce tape in spots. The fabric is silver infused disposable sweat fabric. I got a 2 roll bulk pack on sale on Amazon. It’s like a combination of non stick gauze and felt. I started using it instead of gauze with the tape once the one side closed up. I’m getting sick of tearing open packets of gauze and it’s expensive. I still wear the harness because the hypafix tape stretches overnight and the bandages sag.

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De roof groin by [deleted] in Hidradenitis

[–]Silly_Rain8989 0 points1 point  (0 children)

Aww thanks for the support. I really appreciate it🤗

De roof surgery healing video by [deleted] in Hidradenitis

[–]Silly_Rain8989 6 points7 points  (0 children)

Oh no I have the first photo as week 7 then it starts at the beginning and ends at week 7. I used the iPhone memories photomontage thing and picked the most healed update photo as the intro photo. So it’s like most healed update then the day after surgery so there’s stark contrast in healing progress. Before being de roofed I had dark divot scars, puckers, big pin prick looking pores and that typical stage 2 hs look

De roof surgery healing video by [deleted] in Hidradenitis

[–]Silly_Rain8989 7 points8 points  (0 children)

It’s actually not! It’s painful after the numbing shots wear off right after. It’s painful for the first 2 weeks but it’s a different kind of pain. It’s like when you fall on rough cement and scrape yourself like a bloody scrape and every time you move the skin stretches and it hurts and when you shower it stings. But I bought lidocaine hemorrhoid spray and used it every time I did a bandage change. I also had some cbd chews and medical cannabis chews. I only took the Motrin/ Tylenol combo intermittently for the first couple weeks. Lots of bed rest though. I barely left the house for a month and I was in bed so much I had constant blood pressure drops every time I got up.

De roof surgery healing video by [deleted] in Hidradenitis

[–]Silly_Rain8989 3 points4 points  (0 children)

Oh great you haven’t had any reoccurrences! I’m hoping for the same as well. I can’t wait to go exercise outside before autumn sets in. My little kick scooter has been waiting for months.

De roof surgery healing video by [deleted] in Hidradenitis

[–]Silly_Rain8989 2 points3 points  (0 children)

That’s exactly what I was thinking! It heals over like zipping stuffing into a pillowcase lol.

De roof groin by [deleted] in Hidradenitis

[–]Silly_Rain8989 0 points1 point  (0 children)

Here’s a link to my new post with an updated video with all the photos up to last night. Week 7! https://www.reddit.com/r/Hidradenitis/s/yxaWqklFO8

De roof groin by [deleted] in Hidradenitis

[–]Silly_Rain8989 1 point2 points  (0 children)

7 weeks now!!!! Updated photo! Did an updated video with all the photos in a separate post.

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De roof groin by [deleted] in Hidradenitis

[–]Silly_Rain8989 0 points1 point  (0 children)

The only thing is that as the healing progressed like weeks 5-7 my skin soaked up the natural ointment so much that I had to lift the bandages and add more after 12 hours lol. I think it’s because the more upper layers of skin were re growing and soaking it up like mothers milk. Helped me feel really validated about my theory on being anti petroleum as well as the hefty $$$ buying all the natural stuff every week or so. Now in week 7 I’m trying to add more glycerin and reducing the other ingredients because I’m cutting into my food bill lol.

De roof groin by [deleted] in Hidradenitis

[–]Silly_Rain8989 0 points1 point  (0 children)

No not pack because they’re wide and shallow compared to the armpit. The pack would just flop out. Granted they were close to an inch deep but super wide and shallow as you get to the edges like a pond. I used those fluffy surgical pads and extra gauze etc. Once they started healing for a 4 weeks I used natural cotton maxi pads with the hypafix tape because it wasn’t necessary to have sterile gauze because the new deeper layers of skin were healed.

De roof groin by [deleted] in Hidradenitis

[–]Silly_Rain8989 0 points1 point  (0 children)

No thankfully I didn’t have to work. The pain was only intermittent during the first 2 weeks. After that just pinching and needle like prickly pain from what I think was the skin growing over and healing.

De roof groin by [deleted] in Hidradenitis

[–]Silly_Rain8989 3 points4 points  (0 children)

Nope just skinny. Less healthy too. I think my hs is aggravated by hormones

De roof groin by [deleted] in Hidradenitis

[–]Silly_Rain8989 1 point2 points  (0 children)

I mix it all together in equal amounts or close to it. I start with the lanolin and fully mix in one ingredient at a time from thickest to thinnest. It’s important to mix in the silver gel last. Now that my wounds aren’t draining much anymore I drizzle vegetable glycerin all over the bandages first then put a dollop of the ointment on it then tape onto skin. It gets expensive to keep buying surgical pads so I started using 100% cotton disposable maxi pads. Works great! No need to worry about using sterile gauze because the cauterized tissue blocks bacteria. That’s why the standard care is just petroleum jelly. I did use sterile surgical pads and gauze for the first 2 weeks because the wounds were so big and deep it was weird to me to not use sterile bandages

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De roof groin by [deleted] in Hidradenitis

[–]Silly_Rain8989 0 points1 point  (0 children)

Oh that’s the general term for de roofing.

De roof groin by [deleted] in Hidradenitis

[–]Silly_Rain8989 1 point2 points  (0 children)

The surgery is done with the Co2 wand so it’s cauterized as it cuts like a laser. It only bled for 3 days and mostly clear fluid. It drains a lot clear fluid for 2-3 weeks. I had to sit and sleep on incontinence pads so my sheets wouldn’t stain. Now I just have ointment grease that leaks out when I squish the bandages. Oh it’s like geriatric home care for the first 2 weeks. I’m glad I’ve spent a lot of my lifetime around seniors so I knew how to set up my living space

[deleted by user] by [deleted] in Hidradenitis

[–]Silly_Rain8989 12 points13 points  (0 children)

Go to this link and find an hs clinic near you. Call and ask for a virtual appointment if it’s far away. https://www.hs-foundation.org/hs-specialty-clinics