Dual Sufferers?

I've had Hidadentis Suppurativa since I was 17. Closing in on 35 years. I've managed it well, though I have it in ALL the usual places where skin touches skin. It's stayed Stage 1 mainly, though stage 2 in a few places. I've had more I&Ds than fingers and toes to count. A few excisions over the years. And an acquired allergy to penicillins from just taking so much.

SO, a festering lump on my ass was no biggie. It came. It went. It drained. It flared. It hurt like hell. Nothing new to me. But over the last year, it made a second drainage hole. And I have never got it to drain fully since or go into remission. The abscess is just above my cleft to left. The secondary drainage hole is just inside the crack of my butt cheeks, but not the "ditch". My doctors can't decide if it's HS or pilonidal. Surgeon I saw last week, kept changing his mind during the exam! "HS. No, maybe pilonidal. It's doesn't matter. It coming out all the same way"

Well, yes and no! Lots of similarities, especially with sinus formation. But surgery techniques sound very different. We schedule a excision with primary closure for next month. But now, after reading here. I'm worried! I can't be out of work for 6 weeks. And no way could I care for open healing living alone. (my spouse passed away.)

I feel like canceling the surgery and just living with it. Then the rational part of my mind chimes in and tells myself to just insist on primary closure. I know there is a chance of reoccurrence if it's pilonidal, but reoccurrence is something HS patients face every time we are under the knife.

Basically, I'm anxious. Confused. And worried about aftercare living alone. Any words of wisdom will be appreciated.


Very Helpful
Hi festeringlumps... Wow your story looks like mine. Exactly the same evolution of symptoms and treatment and realisation that pilonidal is treatable.

In reflection I'm amazed my dermatologists did not look further into the 'lump on my bottom' than they ever did. My GP recognised it during a flare up. And went from there.. Full open excision six months later.

Couple of reasons to proceed. 1. Remember the worst pain you had with it. You'll get that again at some stage.. The surgery is equivalent to a really bad episode except you have IV antibiotics professionals treating it instead of you in front of the bathroom mirror every morning and night.
2. It's a massive infection, get it cut out. In my case my HS has gone into remission following the removal. It could be the antibiotics involved but I've had many courses of different types and its never knocked it on the head like now.

I live by myself too... You will need help for at least a month. Assuming the worst surgery.. Big open wound. You'll be on that many drugs your mind and body won't be there to do anything yourself, also you need to focus all your energy on resting and drinking water to make things heal. There should be public nursing available... It's really a must.. Especially if you want wound care professionals looking at it daily. There will be a point you turn a corner and can face some of it yourself. Where you're all rested out and need to start getting involved again.

Last thing... My surgeon tried a 'Delayed closure'. Quite clever... He left me in hospital with it open and packed twice daily while on IV drugs. That was to kill the infection. Then he debrided more tissue and sewed it up. Stitches for 2 weeks... Removal of stitches.. Had to reopen much smaller section to aid healing, 3 weeks later did the same thing, reopened much smaller. He didn't have to, but it would have take a lot longer to be packing the undermined area than to open it up. So instead of 6 months or a year.. It might be 3 months... Where the last month is really less dramatic dressing.
Thanks Tonster. I appreciate you taking the time to reply.

I do need to get my head out of the Hidadentis "mindset". HS is something you live with, manage as best you can, and pray you don't progress to skin grafts and reconstructive surgery. Pilonidal can be effectively treated with much higher success rates.

And you are right, constantly battling inflammation and infection wrecks havoc on your immune system. And being in pain, more days than not, is physically and mentally draining.

I really do appreciate you sharing that you too live alone and how you got the help you needed. That's been weighing on me, increasing my anxiety.