That's a really complex situation — living with Hurley Stage 3 HS on the buttocks alongside a long-standing perianal fistula and stoma is a significant challenge, and it's completely understandable to want to connect with others who share this experience.
Several myHSteam members have shared similar struggles with perianal Show Full Answer
That's a really complex situation — living with Hurley Stage 3 HS on the buttocks alongside a long-standing perianal fistula and stoma is a significant challenge, and it's completely understandable to want to connect with others who share this experience.
Several myHSteam members have shared similar struggles with perianal HS, describing painful abscesses, drainage, and tunneling that progresses along the buttocks area. At Hurley Stage 3, the HS involves multiple interconnected lesions with extensive tunneling and scarring. When this occurs in the perianal region, the tunnels (sinus tracts) can become deep enough to connect with surrounding structures, which is how fistulas can develop or worsen over time.
Key things worth discussing with your care team include:
- Whether your current HS treatments (biologics, immunosuppressants, or surgery) are optimized for the perianal area
- Imaging like a pelvic MRI or CT scan to fully map the tunneling and fistula involvement
- Whether a multidisciplinary team (dermatologist, colorectal surgeon) is involved in your care
Given the complexity of a decades-long fistula combined with active Stage 3 HS, specialist collaboration is really important to manage both effectively and safely.
September 6
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