After much thought and a long talk with my husband, I have decided to get surgery for my hidradenitis suppurativa instead of going on Humira.
I have looked over a lot of options the last few months that have had me a bit overwhelmed. I have wrestled with just doing AIP diet to keep flares down and CBD oil for pain, to the many months of antibiotics that weren’t helping, to Humira that has many side effects and painful shots, to surgery that will have a long recover, or a combination of any of them.
I have dealt with the pain and embarrassment for 13 years now. These last two years, my condition has steadily been progressing. My old boils are tunneling more and in constant drainage and inflammation. I have new boils near my old ones on my groin and buttocks that are starting to tunnel. I also have some that will not pop and drain. The pain keeps me up at night and makes it hard for me to walk or sit. I have scoliosis and bulging disks in my lower back that tighten up and hurt if I am not mobile for long periods. That is added pain and makes it even harder to sit or walk.
I just want it all to stop. I want to be able to play with my grandchildren without being in so much pain. I just want to be able to do fun things again like swimming, the gym, shopping, hiking. I want to be able to clean my home and cook without being in pain. I want to wear clothes and underwear without wanting to scream in pain because they are touching a boil. I want the smell to go away. I want my husband to desire me again without thinking of boils. Until you are in my shoes, you won’t fully understand how painful and debilitating this disease is. I was fine when it was just on my underarm. I could still walk, sit, and do fun things. That’s slowly going away the last two years since it’s migrated south.
I know Humira can help 30-50% in healing and pain, but I am not hip on giving myself weekly shots and having short term and long term side effects. The risks and side effects would be worse than if I just had surgery. Therefore, I have contacted my dermatologist and told him I want the surgery scheduled Asap. He understood completely and is working with me on a plan for after surgery. He sent a note to the surgeon I saw in February who had agreed to do the surgery if my dermatologist said it was a good idea.
The Surgery clinic nurse called me yesterday to set up a pre-op appointment for April 27th. We will discuss the plan for before, during, and after the surgery and make a final date to get started. I know I will have to spend at LEASE 5 days in the hospital and, from what the surgeon said last time, I will need 6 months to do the major healing with up to 2 years to fully heal. I know that sounds like a long time but, really, I will depend on my body and it shouldn’t hurt for a whole 2 years! I have read a lot of people who are so happy they had surgery and they stayed in remission for years before it came back.
My Dermatologist offered this as my possible aftercare: “Once the surgeon has cleared you, I agree with the stopping smoking, exercise. I would do weekly dilute bleach baths as maintenance, can restart the topical antibiotics at the earliest sign of recurrence (or before even for prevention) and let us know if things do start to come back for you.”
I think I can do this. I will keep posting results. For now, I am going to go shopping for my daughter’s wedding dress. I’ve had enough of my disease for the day.