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Hidradenitis Suppurativa (HS) Community
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Avatar universal

Any Alternative to Surgery for Stage III Hidradenitis

Hi Everyone,

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.


BACKGROUND

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.


SURGERY

De-roofing
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.

MEDICATION

Antibiotics
I've tried Clindamycin and rifampicin in the past without any significant improvement along with a series of other antibiotics.

Biologics
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.

Current Medication
I'm currently taking Clindamycin, Ciprofloxacin, Dalacin T (Topical) and Prednisone.

DIET
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.

TRIGGERS
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.

Thanks,

BlueSkyGuy
2 Responses
Avatar universal
I feel your pain. I'm on the same boat. It's definitely nowhere near fun. And nor can I have fun anymore. I usually put paper towels under my arms. That's were it's worse. It's now in my groin area so I put paper towels down there to absorb all the stuff that leaks. But unfortunately the paper towels give me a rash sometimes. So it makes it worse. I start to walk funny or difficult to walk at all. Under my arms it's worse because it's difficult to put a shirt on, jacket, brush hair, scratch head, stretch, reach, all that stuff. I have to wear under shirts to avoid staining the shirt and I have to stain up the under shirt. Embarrassing when it comes time to do laundry as well. But I'm also researching some alternatives. I'm thinking maybe some herbal medicine. Perhaps seeking a healer of some sort? If they exist around me.
1 Comments
Hi, can you please email to me at sally_ho54***@****?  My brother has the same problem but lately he is taking a supplement that has helped him tremendously.  I am not selling the product but am sure you can get it from wherever you are living.  It is a US product and he does not suffer anymore inflamation.  Please do email me as I really wish to give you more information.
Avatar universal
Try limiting all sugar causing agents for a few months. That includes pastas, flour tortillas, and sodas or anything that turns into sugar once it hits your blood stream. High veggie & protein has helped me. Limit stress in your life. Detox your body. Let me know if it works.
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