I saw my primary care doctor and a dermatologist today for my hidradenitis suppurativa surgery. I also wanted to bring up the digestive and other skin issues I have had since being on the gluten challenge for the small intestine biopsy. My day did not go as planned.
Both doctors looked at my HS lesions on my groin, buttocks, inner thigh, labia mejora, and left armpit. I explained that the doctor at the university offered surgery to remove all the lesions and wanted to know their opinion. The dermatologist stated he wanted surgery to be the last resort because it will be most painful and, if not done right, can come back in the exact same spots. He was also worried I would not have proper help at home to heal after the surgery. He is right and I’ll get into this later. He, instead, offered Minocycline 100 mg 2 times a day for 3 months, 800 mg Ibuprofen 3 times a day, and Humira. I told him I was very worried about all the risks of taking Humira and he explained that the risks were low and I would be carefully monitored. He said that the objective is to stop the inflammation so my body can heal. Humira is made to suppress my immune system. The very system attacking my body inside and out. The whole meeting took less than 10 minutes and, as I dressed, the doctors went into the hall to talk about my treatment. And, I waited for my primary to return to finish up. That part was the disappointment.
My PCP returns and offers no medication, no pain management (I’m in so much pain from sitting that I am near tears at this point), and says he’s shoving me off (my words) to the surgeon at the University hospital to have a dermatologists treat me. I tried talking to him about my painful diarrhea with some kind of jelly substance in it and skin rash on my face, back, and scalp. I was ignored and he moved on to my borderline low iron levels. WTF? NO!!! I could care less about my iron, I take a dang multivitamin with iron and eat lots of iron rich foods, HELP ME WITH MY HS!!!! HELP ME WITH THE PAIN!!!! HELP ME GET MY LIFE BACK!!! That was all I could scream in my head, but I was too afraid to say anything. He only told me to come back in 2 months to get my iron checked again.
I left pissed off and called my daughter to come get me. She told me to march back inside and demand some help. Why am I seeing another dermatologist when I just saw one? Why was I not offered the treatment talked about? Why have I spent $25 a pop for 3 visits in 3 months and no help given? I spoke to the director of the clinic and begged for help. She took notes and said she would call me back. I then called my surgeon’s office to let them know what the heck my doctor just did to me. The care team at the surgeon’s office said they don’t treat the HS, just do surgery and not sure why I’m being sent back to them when I just saw someone for this. Plus, they are mainly a cancer center and only have an oncologist dermatologist. She too had to get answers and call me back.
After about an hour, my doctor’s nurse called back to let me know they were calling my prescription into the pharmacy for the Minocycline and Ibuprofen (yay, some relief!). Next, the doctor is sending me to see the hospital dermatologist because their dermatologist only comes in one time a month or every two months. With Humira, I will need more frequent care and observation. The downside is that I can’t see anyone until May 21st. Hopefully the antibiotic will help until then.
With this antibiotic, I’ll need to take a good probiotic. I can’t have gluten, yeast, corn, potatoes, tomatoes, peppers, soy, dairy, or shellfish. Gluten and shellfish give me severe reactions and the rest flare up my HS. I plan on staying off those foods to further help my HS with the only exception being gluten for the 2 weeks before my April 3rd Celiac biopsy test.
I prayed a lot before this appointment that God would lead me in what to do with the surgery plan. I struggled with having the surgery because I would have little to no help at home. Yes, I am married, but my husband has brain damage and I am HIS caregiver. He helps as much as he can, but my disease is already a strain on our marriage. I do most of the cooking, cleaning, and all of the finances and business aspects of things (talking to people for him). He has issues with memory, behavior, over eating, chain smoking, impulsiveness, over spending, empathy, sympathy, and stresses way too easy. It’s not his fault, it’s his brain injury, but it’s still a stressor in the marriage on top of my illness. I am now taking on his and my illness together. I love him, but know I’d get no help after surgery. I was not sure if God just wanted me to trust my husband to care for me or just trust that I will heal with no surgery and just eating right, losing weight, not smoking, and taking medication the doctor orders. After much prayer, I decided to let God show me by my doctor’s and the dermatologist’s recommendation today. I guess the answer is no to the surgery and, therefore, I am just going to trust God in using these doctors and eating for healing to send me into remission. This will also help me be able to focus more on my marriage/healing and less on the fears of post op problems.
Lastly, I cancelled my gym membership and will be doing yoga and pilates at home (maybe of thai chi too) untill I am healed enough to move and walk without so much pain. I already have two yoga mats, two blocks, 3 DVDs, and plenty of YouTube videos at home.
If you want to know more about Humira, check this out: Humira and Hidradenitis Has anyone tried this with any luck? I know it takes about 3 months to start getting results.