While I've been avoiding it for several years I'm facing the inevitability that wide surgical excision may be the only option left for me.
In a final attempt to deny my fate, I wanted to see anyone has some advise for me regarding any real alternative to surgery when you're at stage III. I also wanted to hear from anyone who has has a positive experience with wide surgical excision.
Any advice or feedback would be greatly appreciated as I'm really struggling with what to do next.
I'm a 46 year old guy from Toronto Canada, who has been suffering from HS for 10+ years. I'm not overweight (although I could loose 10-15 lbs). Walking any real distance leads to friction and additional inflammation within 12 hours. Exercising is too painful.
I currently have stage III on both sides of my groin and on my left armpit that have been draining 24/7 non-stop for the past 8 years. As you'll all appreciate, they are extremely painful and severely hinder my quality of life.
I see a pretty good dermatologist. Every 6 months he sets up an appointment for morning rounds at a hospital where he has 5+ doctors take a look and review my history. They then 'crowd source' possible treatment protocols between them.
I had about 4 procedures early on many years ago to cauterize (de-roof) the sinus tracts in my groin. This only offered very temporary remission at the time.
Wide Surgical Excision
I have a consultation appointing in July with a surgeon to discussion wide surgical excision of my left arm pit and both sides of my groin.
I've tried Clindamycin and rifampicin in the past without any significant improvement along with a series of other antibiotics.
I've tried just about everything including biologics (Remicade, Humira and Kinneret) and have been able to get it under control. As much as I had been resisting wide surgical excision I can't see any alternative.
I'm currently taking Clindamycin, Ciprofloxacin, Dalacin T (Topical) and Prednisone.
I've tried a paleo diet but didn't see any significant improvement. I'm currently two week into a Ketogenic Diet but haven't seen an improvement yet.
I know that the following will typically trigger a flare-up,
- Sugar: If I consume sugary foods I'll see a reaction
- Stress: Definitely a correlation with stress or a lack of sleep
- Friction: Any kind of friction will trigger a flare-up
Would love to hear from anyone regarding my situation. I'd also be interested in hearing from any HS suffers in the Toronto area.