I started KS and HS because I was frustrated. I felt frustrated with my doctors. I felt frustrated with my skin. I felt frustrated with my insurance company. I even felt frustrated with my friends and family simply because they did not understand what I was going through.
In a conversation with a friend, she mentioned that she appreciated when I posted on instagram about living with a chronic illness because it helped her understand my experience. (A good reminder that our friends are not mind readers) She suggested that I post more often to raise awareness of HS and chronic illness.
But HS is so all encompassing and I did not want my social media to become solely about it. That’s when I created KS and HS, a separate instagram account dedicated to my journey with HS. It is an outlet for all my frustrations, anger, and feelings about HS. Since then, it has become a platform for me to raise awareness about Hidradenitis Suppurativa, chronic illness, and the faults in our health care system. It has always become a way for people to connect with others who face similar challenges; it is a source of great pride to me that people trust me enough to share their stories with me and others on KS and HS.
I experienced my first HS flare when I was 10 years old and it completely freaked me out. My family and I had no idea what it was. This started a 7-year long journey of clueless doctors, painful procedures, and overwhelming emotions.
Fast forward to when I was 17 and my mom confronted me about the bloodstains in my clothes. She asked me if I was still experiencing those cysts like the one I had when I was 10. By this time, there was a new dermatologist in my hometown and she was getting good reviews. She hoped this new dermatologist might give us some answers.
Boy did she! She knew exactly what it was just by my description. At 17 years old, 7 years after my first flare, I was diagnosed with Hidradenitis Suppurativa. This is about average for an HS diagnosis – many people are not diagnosed for much longer! We started with a topical and oral antibiotic, which is pretty normal in the HS world.
After my failed trial with antibiotics, I tried the next step in the treatment process: Accutane or Isotretinoin. Since then, I have tried isotretinoin 2 more times. Each time failed to help.
Then we moved to Humira. This was before Humira was approved for the treatment of HS and my dermatologist had to fight my insurance company for it. By now I was 18 and in college.
Humira helped at first and then…. It just didn’t. Humira is a difficult drug to physically get. Since it is usually managed by a specialty pharmacy and delivered to your door, there are several points where things can go wrong… and they did… often.
Eventually, taking Humira became too much for me. It stopped working. It became a pain to get a new order because of constant miscommunication. It hurt to take. After a while, I built up a mental block to it. I subconsciously (or consciously) avoided taking it as much as possible. I told my dermatologist that I wanted to stop it.
This was a turning point in my treatment. She told me that there was nothing else she could do for me. She strongly encouraged me to keep taking the Humira, at which point I started crying and became inconsolable. She told me I had no other options unless I chose surgery.
My parents jumped into action at this point. They started researching HS treatments and learning more about the pathophysiology of HS. My dad found an experimental treatment that included the removal of skin through a CO2 laser and secondary intention healing. This procedure was done in a doctors office under local anesthetic. The top layer of skin is removed using a laser. The dermatologist can see the damaged skin and remove all evidence of HS and tunneling. Secondary intention means that nothing was done to heal the wound afterward (except wound care). It would heal on its own. I did this procedure twice, once in my right armpit, and once in my inner right thigh.
The experience was not great. Secondary intention healing meant each wound took around 6 months to heal. Local anesthetic limited the area that the procedure could happen so he was not able to exercise all the damaged skin on my thigh. Plus I was conscious during this time which is physically and emotionally difficult.
The risk of surgery and the removal of skin is that there is a high likelihood that the HS will come back. This is why many people, like me, are reluctant to try surgery for HS. It is a traumatic procedure for your body to undertake when there is not a guarantee of success. However, after my experience with the CO2 laser, I knew my body could not handle that approach again. I also wanted to be able to remove a larger area of damaged skin in one surgery, something that was not possible with localized anesthetic.
My dermatologist referred me to an excellent surgeon. She took the time needed to listen to my concerns and anxiety. My best friend came with me to support me which helped my anxiety. We agreed to try out skin excision in the traditional sense – under general anesthesia – on my abdomen. That surgery was an outpatient surgery and was fairly easy. She was able to stitch up most of the wound and it healed in a matter of weeks.
Once I deemed that surgery a success, I decided it was time to go for the full whammy. I decided to have skin excision surgery in three different areas – my left armpit, and both of my inner thighs/groin area. I consulted a plastic surgeon for this approach. Working with my general surgeon, the plastic surgeon suggested skin grafts for the healing of my thighs and a skin flap for my armpit.
The plan was set. In April of 2017, I was 24 and I graduated from my graduate program. In May of 2017, I checked into the hospital for my skin surgery. I had no idea I would be there for 18 days.
This was a large surgery with multiple steps. I came out of the surgery with three wound vacuums, one attached to each wound. I was in a lot of pain and fairly immobile. Wound vacuums are vacuumed sealed to your wound and it is fairly painful to change them. Since I had large wounds, the surgeon decided to do this under general anesthesia – which I fully appreciated. I went under anesthesia two more times for a wound vac change.
Then I had plastic surgery. Let me tell you, skin is baffling to me. It is an impressive organ. The grafts were taken from shaving off the top layer of skin on my thigh. Then it is put into a machine the skin cells quickly regenerate and is placed on your wound to quickly grow into new skin. The skin flap still baffles to me to this day. They somehow cut a large portion of skin out of my back on three sides and then rotated it on the fourth side to cover the wound in my armpit. This was stretched and stitched to heal as my new armpit.
After this surgery, I decided I was done with Humira. I saw a new dermatologist and started Remicade, another biologic similar to Humira that is administered through an IV. I also saw a pain specialist and he recommended Vicodin and/or Percocet for me to manage my flares. I was on Remicade infusions for 4 months when I moved to another state and started new insurance. New health care and insurance causes problems with my infusions and I was unable to receive any for over 4 months.
My current dermatologist prescribed the Remicade again. However, since I had involuntarily been forced off the Remicade for 4 months, my body created antibodies against it. This means that the Remicade is basically pointless. My dermatologist prescribed Methotrexate to combat the antibodies and hopefully render the Remicade effective again. We are still waiting to see if this treatment will work.
I tried to keep this story short but there is so much to share! I never know which part of my experience may help someone else. I am happy to share more if you have questions, just use the contact form to contact me!