It finally happened, a chance at some remission. I’m writing this for all who suffer with hidradenitis suppurativa and who might also be thinking of surgery. I chose a very experienced surgeon who not only has knowledge of HS, but also is a colon surgery specialist since I have colon issues as well. This was my choice, but I urge anyone getting HS surgery to pick a surgeon who knows a lot about the skin disease.
I want to stress that everyone’s surgery may be different from mine. This is just my personal story. I will share good or bad changes as they happen. My hope is to only have good reports.
I couldn’t sleep much the night before. I was at peace with my decision, just nervous about after pain and excited to get it over with. I got all the bills paid before we left and ordered groceries for the week online. I didn’t want to have to deal with too much after surgery.
I started in pre-op prep at 11am. Someone went over my personal information, a nurse took my vitals and then started an IV with saline and an antibiotic drip. At about 11:45am, my anaesthesiologist came in to ask questions and make sure I would be healthy enough for anaesthesia and intubation. Yes, I was knocked out with a tube placed in my lungs to breath for me. My Surgeon came in soon after to let me know what he would be doing. He assured me he would take out all areas he found with either deroofing or wide area excision and it would be left open to heal. I was given a little medication to calm me before being taken to the operating room.
After being wheeled into the operating room, I talked with a whole team of people who would be caring for me. They made me feel so comfortable and assured I would be in good hands. Everything happened so fast and, before I knew it, I was knocked out.
While in the recovery room, but before I woke up, my doctor told my husband everything went well. He explained that I needed to change my dressings twice a day until I come see him again in 2-4 weeks. I’ll be going back June 22nd.
I woke up with pain mostly in my arm, very out of it, and shaking. The nurse asked if I’d ever had Demerol and, when I said yes, she told me she’s giving me some to help with the shaking caused by anaesthesia. My husband was allowed in and the nurse offered me crackers with clear soda. I felt like I had a bad hangover and I then wondered if I could straighten out my legs without pain. I slowly straightened out my legs that were left open after the surgery and was surprised they didn’t hurt as bad as I thought. I still had no clue the extent of the surgery and started peaking at my covered arm and groin. I couldn’t tell anything about my arm because it was taped up with dressings, but my groin just looked bloody.
After a nurse gave me some fentanyl and two Percocet pills, she went over my discharge papers. I was told to wash my wounds with mild soap once a day with my fingers and pat dry, leave uncovered at times to air out, cover anything draining or bleeding, and call if I have signs of infection or questions. I was told to take Percocet every 6 hours for pain and a stool softener twice a day. The nurse removed everything and sent my husband to get the car pulled up front. Sitting in the wheelchair or car seat didn’t hurt, but the ride home was a nauseous mess. Honestly, my only complaint is the nausea and dizziness.
When I got home, I changed into comfortable clothes and broke out a mirror to see what was done to me. It honestly looked like a monster with claws got mad at my groin and armpit. It looked deep and black (clotting I assume). I have 9 wounds. My husband took pictures for me to share with you all. You have been warned, the pictures are graphic. I wasn’t able to sleep or really eat until about 9pm and then woke up in a bit of pain at 3am. I am still able to walk and use my arm as of now. I just take things slow and try not to over do anything. I still have a bit of a headache and nausea, but not near as bad as before. I only took half a Percocet, but it’s making me sick to my stomach again. I’m thinking I will just stick to regular Tylenol as needed unless the pain gets really bad. Obviously, opioid medication and me don’t mesh well.
I have to give some major credit to my husband. He helped me to the bathroom when I was dizzy, got me things I needed in the house and at the store so I wouldn’t overdo anything. He even got us a used Xbox One at Game Stop with Skyrim so we could lay in bed and play some games together. My daughter also has a few games we can borrow if need be. I love reading and watching Netflix, but gaming sounds like a good way to end boredom while healing. He’s been begging for an Xbox for a week now anyway. HA
How do I feel about everything? I am so happy I got this done. It wasn’t as bad as I thought it would be. I think it helps that I was dealing with pain for 13 years and this is nothing knew. It’s just a new type of pain. I will tell you, the pain is no where near as bad as a flair on my BEST day. I have dealt with itching, puss, throbbing pain, not being able to walk right or use my left arm well, and sometimes not even able to sit or close my legs. I am now just dealing with a little irritation and bleeding. I am numb all around the areas cut. It’s like I lost nerve endings. I am aware that it will hurt once my nerve endings start repairing themselves and will probably save the Percocte for those times if I can. I look forward to healing and being able to go back to the gym to lose all the weight I have gained not being able to walk or do much due to the HS in my groin and arm.
If you are thinking of surgery, pick a good surgeon who knows how to treat HS and go for it. I saw video of people who’ve had the surgery on YouTube and it looks like people had more pain and loss of range of motion with being stitched up. This is why my Dr chose to leave it open he said. He knows I quit smoking and plan on losing weight after this and has faith I will be ok. This disease has no cure, you can’t catch it, and no one knows 100% what causes it. Surgery will not cure you, but you will not get HS in the removed areas if done right. You can, however, get it in other areas. For this reason, it is VERY important to do whatever you can to keep yourself healthy and take preventative action to keep it from coming back. There are a lot of tips online, a good doctor that knows HS can help you, and good social media groups you can join that have others who can help give advice as well. The bottom line is that you have to do what is right for YOU. Take all the advice in and do what works for you. What works for one may not work for someone else. Steer clear of people who say they have a cure or that you will only get better following their way. Also steer clear of people who put you down for trying or something that helps your HS. If following the Hidden Plaque works for you, follow it. It actually has some good tips in there. AIP did not work for me as mine is mostly from stress and hormones. However, eating organic, nondairy (I am lactose intolerant anyway), cutting out sugar as much as possible, and eating less to no processed foods HAVE helped me stay healthy and less flared. The less chemicals you put in your body, the better you will feel.
On that note, here are the pictures.