One Thousand Words

I have a skin condition called hidradenitis suppurativa (note: explicit medical photo at link) that causes abscesses to form on certain parts of my body. I have one that recurs fairly regularly on my waist, a little toward the back. I'm very careful about what kind of clothing I can wear because friction can aggravate things. Too-tight waistbands, belts, etc. can really do a number on me. However, it also flares up on its own regardless of what I do or don't do which is one of the big frustrations of this disease.

Sometimes I get absolutely searing pain in my back not too far from that area, and then a few days later I develop a very large abscess that sometimes needs to be treated with very powerful antibiotics. Other times I self-manage it with antimicrobial soap and topical ointments, heavily bandaged. The inflammation from the abscess often causes pain through my body, especially my joints, and leaves me feeling drained.

I'm afraid that this back pain means I'm about to sprout a truly awful abscess. I'm going to try and make an appointment with my dermatologist on Wednesday for an evaluation and discussion about antibiotics and also going back on Humira. I also need to schedule a skin check.

But it's also possible I just... pulled a back muscle while tucking in my shirt, just as I once tore my meniscus while putting on a pair of pants.

Human bodies just suck.

Mirrored from Words, words, words, art..

I had surgery on my butt in August and I’m going to tell you ALL ABOUT IT in a series of posts because apparently what I do on the internet is talk about my ass. Which has resulted in a bunch of really interesting twitter bots following me. Lord help me when I try to get a job and they do a google search on me or something. Anyway. Pilonidal Cysts.

I have a cystic skin condition unrelated to Pilonidal Disease, so when I had gross oozing, bleeding, swelling, and pain at the base of my tailbone/ass I assumed it was just my skin being awful and trying to kill me. I’ve lived with this for LITERALLY twenty years. TWO DECADES. I was aware of what Pilonidal Cysts are, but what are the chances that I’d have hidradenitis suppurativa AND pilonidal disease? IT IS TO LAUGH. Of COURSE I’d have both! I mentioned my butt issues to my general practitioner who said “Hm, that sounds like a pilonidal cyst, pull your pants down” and I did and mooned her and she said “yup that’s a Pilonidal Cyst here’s a referral to a surgeon.”

I foolishly assumed the surgeon could like… lance it in his office and that’d be it. OH LOR. NO. It involves actual knock-you-out surgery and I’m going to talk about that in a later post. But right now I’m going to talk about what a pilonidal cyst is.

There’s a lot of misconceptions about Pilonidal Cysts/Pilonidal Disease and what causes it. The general idea most people have of Pilonidal Disease is that it’s caused by fat hairy gross dudes who sit around too much in a slouched position while playing computer games and jerking off. It’s OBVIOUSLY caused by ingrown hairs, poor hygiene, improper seating posture, etc.

Actually, according to my surgeon, it’s not! It is, I believe, related to Spina Bifida. When the fetus is forming you have the neural tube that eventually closes to form the spinal column. Sometimes it doesn’t close completely and a little pocket or closed tube is formed. Either you’re born with it or you’re not. If you’re born with it, either a hair grows into it or not. If a hair grows into it, either it gets infected or it doesn’t. If it gets infected either it comes to a head on its own and drains (like mine did, continuously for twenty years) or it just swells up and is horrific. It’s entirely chance. There’s nothing a person can do to cause or prevent it. Lancing, antibiotics, etc don’t really affect it. Even if you can get it into remission, it’ll come back. The surgeon I saw stressed that it’s something he sees all the time in men, in women, in thin people, in fat people, in hairy people, in not hairy people, in active people, in sedentary people. It’s just a thing that happens. And it can be treated.

The surgeon I saw removes the entire Pilonidal Sinus in out patient surgery and then stitches it all up. He does not pack the surgical site unless the stitches fail, which I appreciate, as I didn’t want to deal with packing. It took me about 3 weeks before I could sit again (I basically spent two weeks doing nothing but lying in bed, which actually is awful.) In my next post I’ll talk about how to prepare for surgery, and what happened with my surgery.

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