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Internal fistulas are a rare complication of hidradenitis suppurativa (HS). An internal fistula is a tunnel or connection between your skin and your intestine or bladder that isn’t supposed to be there. In people with HS, internal fistulas usually only happen when inflammation isn’t well controlled.
Fistulas can also cause complications of their own, such as malnutrition and skin infections. To avoid fistulas, be sure to manage your HS with treatment to control inflammation. Learning about fistulas and how HS might lead to them can also help. In this article, we’ll discuss internal fistulas related to HS and how to treat them.
People with HS have inflammation in certain areas of their skin, particularly areas that have a lot of sweat glands, like the armpits or groin. HS is an autoinflammatory disease, which means your body creates inflammation. In the case of HS, it does this by attacking hair follicles. While inflammation is normally a good thing — as part of your body’s natural healing process — long-term inflammation that doesn’t have a clear cause can become a problem.
In HS, chronic inflammation leads to skin symptoms like abscesses, nodules, and sinus tracts. Sinus tracts are small HS tunnels that form between abscesses and the surface of your skin.
Sometimes, when sinus tracts form in your pelvis, genital area, or between your buttocks, the tunnels can become deep enough to enter your bladder or intestines. This forms an internal fistula, which is an opening that can allow the contents of your bladder or bowel to leak through your skin. A fistula that causes leakage from the GI tract through the skin is called an enterocutaneous fistula.
HS can cause fistulas to form in a few areas, creating connections between the skin and different organs. A study from 2019 found that almost 19 percent of people with HS experience anogenital involvement (symptoms around the anus and genitals), putting them at higher risk for developing anogenital fistulas, or fistulas around the anus and genitals. However, this statistic may vary based on the study and groups studied.
An anal or perianal fistula is a channel or connection that forms between the skin surrounding your anus and the anal canal (inside of your anus). You might develop a perianal fistula after developing an abscess in this area if you have perianal HS. Anal fistulas may arise from perianal abscesses (either with or without HS).
HS isn’t the only autoinflammatory condition associated with perianal fistulas. Perianal fistulas are also common in people with Crohn’s disease. Crohn’s disease isn’t a skin condition but a type of inflammatory bowel disease (IBD). While the connection between HS and Crohn’s disease isn’t fully understood, the conditions have some similarities. People with IBD are nine times more likely to develop HS than people without IBD. Between 17 percent and 40 percent of people with Crohn’s disease also have HS in the perianal area, which can cause fistulas.
In a study of 122 people with perianal fistulas, 6.6 percent of participants also had HS.
Bladder and urethral fistulas are much rarer, but they can happen with HS. Fistulas can form between the urethra and the skin around the genitals (called a urethrocutaneous fistula), the bladder and the skin, or the bladder and another organ, such as the intestine or vagina.
The symptoms of an internal fistula related to HS can vary based on where the fistula is and whether it involves a leak. If a fistula causes your bowel to leak, for example, you might absorb nutrients poorly as they move through your intestine. Some fistulas don’t cause any noticeable symptoms.
Perianal fistulas can impact your quality of life, with possible symptoms like:
Bladder and urethral fistulas can cause leakage of urine through the fistula, urinary incontinence (inability to hold in your urine), frequent urinary tract infections (UTIs), or gas leaking out of your urethra when you pee.
Members of myHSteam have shared their experiences with fistulas, describing what their fistulas look like, what they feel like, and how long their symptoms have lasted:
Talk to a healthcare provider if you notice any signs of a possible fistula with HS. If you have a gastrointestinal fistula, you might first notice changes in your bowel movements, like frequent and severe diarrhea. Let your doctor know right away if you notice any fluid leaking or draining through an opening anywhere on your abdomen or around your genitals and anus.
Fistulas can lead to infections and other complications if you don’t treat them, so it’s important to seek medical attention as soon as you notice a fistula has formed.
In most cases, doctors are able to diagnose fistulas by reviewing your medical history and performing a physical exam. However, your doctor might use other tests to find out what type of fistula you have.
Imaging tests help your healthcare provider get a better look at your fistula. Pelvic MRI is usually the most accurate imaging test for diagnosing perianal fistulas, but if you have an infection or abscess, your doctor might use a CT scan instead. CT scans are also often used for diagnosing fistulas in the bladder and urethra.
Your healthcare provider might also use a long, thin, lighted instrument to examine a fistula more closely. For example, a cystoscopy involves inserting a lighted scope into the urethra to view a fistula that has formed inside. For a perianal fistula, your doctor might use a similar procedure called an anoscopy. Another option is an endoscopic ultrasound. Both tools help look inside the anus.
Another test called a fistulogram involves injecting contrast dye into a fistula before taking an X-ray. The contrast dye helps your doctor see the fistula in more detail.
Most bladder and bowel fistulas need surgery, but your healthcare provider will consider your fistula’s size and location before recommending treatment. It’s important to follow your HS treatment plan closely to keep inflammation in check, which can help prevent fistulas from forming.
Aside from surgery, your doctor might prescribe antibiotics to treat any infection or abscess that happens with a fistula. Combining antibiotics with biologic medications can help ease inflammation. Biologics are used to help calm your body’s overactive immune system in HS.
Some fistula surgeries are simple while others are complex. Your surgeon will choose a technique based on how severe the fistula is. More severe cases require more complex surgery.
Simple fistula surgery is called fistulotomy and usually only involves one operation. About 95 percent of anal fistulas are treated in this way. Fistulotomy involves closing the fistula and removing any infected or damaged tissue from around it.
More complex fistula surgeries can happen in stages using several different techniques. Complex surgery for a perianal fistula may involve any of these strategies:
If you think you might have a fistula related to your HS, talk to your doctor or dermatologist. A healthcare professional can confirm if you have a fistula and decide the best treatment option based on your fistula type and size.
Ongoing management of your HS can help prevent fistulas from recurring (coming back).
On myHSteam, people share their experiences with hidradenitis suppurativa, get advice, and find support from others who understand.
Have you had an internal fistula with HS? Let others know in the comments below.
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