This is my experience with wide excision surgery in the armpits, abdomen, groin and inside of my right thigh. Just like HS is personal and different for each of us, each person’s experience with surgery is different as well. I’m not saying that you can expect the same experience, but when I wanted to find out about what to expect from someone who had it done, there wasn’t much out there, which is why I created this story. **GRAPHIC PHOTOS AT THE END OF THE ARTICLE**
I’ve had HS for 29 years, I’m now 40 and had my first abscesses when I was 11. I spent many years not knowing what it was, then many more years being told that antibiotics were the answer, then many more years avoiding the doctor since there were no new advancements, then I decided not to waste any more years. I saw an ad for Humira and went to the dermatologist again. Humira didn’t work for me, so I was referred to a University hospital as my case was too severe and my derm didn’t offer Remicade as a treatment option.
The UW derm asked that I meet with the surgeon just to have a consult. I was dead set against surgery before the consult, but reluctantly agreed.
Queue Dr. Kim, General Surgeon. I was smitten. He gave it to me straight, pulled no punches, looked at me and said, “I can help you,” something I never thought I’d hear in regards to this disease. He told me he’s an aggressive surgeon and it was music to my ears. I had tears in my eyes, I signed the consent that day, Wednesday, and was scheduled for surgery the following Monday.
We decided to start with my armpits, bilateral axilla, as well as a spot on my abdomen. I was told that they couldn’t do these surgeries on active flares and that was wrong, so wrong. My armpits were mostly scarring and tunnels, I didn't have any active flares in my armpits at the time. The spot on my abdomen was a different story, it was angry. About two hours later I had no armpits and the spot on my groin was a deep crater.
I was scheduled to spend the night in the hospital to make sure my pain was controlled, but ended up going home that afternoon instead since I wasn't in any pain and would be more comfortable at home. I left the hospital with instructions to change the bandages twice daily and only use dry gauze. ***DO NOT LISTEN TO THAT ADVICE***. Well, here’s a little lesson for ya, dry gauze sticks to wounds. Trying to pull gauze stuck to a wide open wound was something I never hope to repeat, except I would continue to repeat if over the next few days. I took showers to get the gauze unstuck, drinking water in the shower to calm myself, and doing a lot of self talk and breathing to get them out. Repeat twice daily.
I finally couldn’t take it anymore and was having severe anxiety about bandage changes all the time and couldn't relax during the day fearing having to do it again. My mom decided that enough was enough (yes, I’m 40 and my mom was my bandage changer, my husband faints instantly at the sight of blood so he was out). ER visit time. The usual looks like I’m drug seeking despite the huge, gaping wounds in both armpits and a crater on my abdomen there with my mom, yup, drug seeking for sure. WET TO DRY GAUZE SAVES THE DAY, and many days after that. I left with more pain meds to tide me over and a new way to bandage that would save my sanity.
You can’t wash your hair, you can’t reach your hands up above your head, your range of motion is limited. My family had to wash my hair for me and help dry me off, etc. As the days wore on, I was able to do more and more for myself. Every day my mom made a point of taking me out somewhere, even if it was just to Starbucks to get coffee just to keep my momentum and stamina up and just for a change of scenery; this saved me in more ways than I realized.
I started going to wound care after my first follow up visit which was a life saver. Normal people like us don’t know how wounds like this should look like, what to expect, how they look when they’re healing, we don’t know anything about this stuff! It’s gruesome and amazing to watch all at the same time. I took weekly pictures of the progress since I couldn’t see what was happening under my armpits all the time, it was hard to lift my arms up for the first week or so. I focused on doing things for myself and pushing my range of motion so I wouldn't lose any of it and it worked.
Four weeks later I had a followup again and we discussed the huge flare in my right inner thigh and mess of a groin. After that I was back in surgery and only a month and a few days after my bilateral axilla surgery.
I stayed the night in the hospital after my groin surgery and that was hell. I would have much rather been at home, but they were concerned about pain control, and again I didn’t have much in the way of pain. The groin and inner thigh are such delicate places to bandage and it’s really hard to get them to stick there as well! You spend a bit of time walking like you just got off of a horse for fear of rubbing your thighs together. Peeing seems like a lot of effort (see more below for tips on this) and there’s just a lot of hanging out. Again, I couldn't change my bandages and had to have help from my mom and daughters. Even towards the end my husband could change my bandages, I couldn’t talk to him while he was doing it of course, and he had to be very methodical.
I tried to remember to take weekly pics too of this one, especially since i couldn’t see it! Went to wound care for this one as well and it healed at super speed.
Fast forward just a bit more than 3 months and I’m totally healed. My armpits look amazing, the scaring is much smaller than I expected (I was OK with a grotesque scar, I was still more pleased than with my HS scarring and tunneling). The scar on my abdomen is the same, smaller than it started out and looks beautiful!
My groin is the best one for me. I dealt with chronic pain with a recurring abscess there for almost a year that was so incredibly painful and to go through life without that now is more than I could ask for. The most common question has been “weren’t you in so much pain the entire time?” I mean that’s what you’d think with big open holes in your skin, but the answer is NO! It was pretty darn pain free. By day 4 I was only taking ibuprofen and Tylenol, no pain meds except before bandage changes.
There were many ups and downs with this process, especially the groin part. I still need to have the other side done, but I’m going to hold off for now. My body needs a bit of a reprieve. I’m grateful to have such a caring, loving and supportive family who will do anything for me, they made all of the difference in my recovery and successful healing.
Here are some tips for surgery and recovery:
TYPE OF SURGERY - Some docs want to do skin grafts, this is not necessary and can actually prolong the healing. The best type of surgery for HS is a wide excision with second intent, which means it’s left open to heal from the inside out. This method has the lowest recurrence rate for the disease and there are fewer complications with this method as well.
POSITIVE ATTITUDE - This will only be as good as YOU determine it will be. Make sure you’re in the right head space.
GO GIRL - If you’re having a groin surgery this is a MUST. You can buy it on Amazon or $9.99. It’s a women’s urination device so you can pee standing up and not get your bandages wet. This is a game changer. Buy 2 if you’re going to be out of the house so you can keep one in the bathroom and another in your purse (in a ziplock).
WET TO DRY BANDAGES - DO NOT USE DRY GAUZE! Use a loose weave gauze and dip it in saline solution, wring it out until there are no drips and loosely place it in your wound bed. Keep it off of the outer edges of the wound, just in the meaty part. Put an ABD pad over it and tape it down and you’re good.
MEDICAL SUPPLIES - Even though mine were furnished by wound care, I still had to buy some things on Amazon like saline, the tape I preferred, 4x4 gauze pads, etc. You will need to spend some money out of pocket most likely, so be prepared.
KEEP MOVING - Keep getting up and doing things, keep going out into the world, keep doing your hair and makeup, keep getting dressed, keep moving forward. It’s easy to become depressed during this process, it’s important to keep the pulse on your mental status and make sure you’re being good to yourself.
ACCEPT HELP - I think this is the hardest one for us, we’re used to suffering in silence and just carrying on no matter what, so being down and out due to this disease is frightening and scary and makes you very vulnerable. It’s OK to ask for help or accept help that’s being offered. This does NOT mean you’re weak, it means you’re strong enough to know you need it.
PREPARE TO FEEL EMPOWERED - For the first time in my 29 years of dealing with HS I feel like I’m in control. We all know this is just how it feels, but I’ll take it! I made a choice to do something positive for myself and my family and my future to take control of this and do what I can to make my life better; that’s a pretty empowering feeling.
STILL GET FLARES - You will still get flares, no matter how much they took out. The hope is that you get them in different areas and not where you had the wide excisions, but even that’s not a guarantee. The first time you get another really bad one is devastating, it knocks the wind out of you. All this work and surgery and you still have them? That’s cruel, that’s HS my friends.
GRATITUDE - You will quickly learn through this process who your real friends are. Some will rise to the occasion and others will sink to the bottom; this is the natural “thinning of the heard” as I like to call it. Actions speak louder than words.
If you choose to have surgery for your HS, I would implore you to talk with a surgeon who does these types of surgeries. I was surprised to hear that Dr. Kim does at least 10 per month. There is no guarantee that it won’t come back, but there also is no guarantee that it will. I CHOSE THESE SCARS. Same disease, different scars.
hsconnect.org
