Light at the End of the Tunnel: How to Manage a Crohn’s Disease Fistula

The “tunnels” that develop between parts of the digestive tract are common and often painful, but most can be well-managed with available treatments.

Many of us probably wish there was some sort of magic wand we could wave to make the unpleasant side effects of Crohn’s disease go away — including fistulas.

A fistula is an abnormal connection between two body parts. Some describe this connection as a “tunnel.” For people living with Crohn’s, fistulas are often a result of severe intestinal inflammation that extends through the entire thickness of the bowel wall.

Obviously, this can be extremely uncomfortable and painful — not to mention alarming.

On the (very dim) bright side, at least you’re not in it alone. Fistulas are a common complication of Crohn’s disease, one that affects up to 50% of people with the condition. More than one-third experience recurring fistulas, too.

Thankfully, we live in a time when medical advancements exist to keep our Crohn’s disease fistulas manageable. Read on for everything you need to know about identifying, managing, and treating your fistulas with the help of your medical team.

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What are the different types of Crohn’s disease fistulas?

You can experience fistulas anywhere along the gastrointestinal (GI) tract, and it can happen at any point during your lifetime.

Crohn’s disease fistulas may affect your small intestine, rectum, colon, or the anus, and each variation presents its own unique challenges.

According to the Crohn’s & Colitis Foundation, you might have the following types of Crohn’s disease fistulas:

• Perianal fistula: This is the most common type of fistula in Crohn’s disease, accounting for 54% of fistulas in Crohn’s patients. It occurs between your anal canal and your perianal skin, and can cause symptoms like pain (while you’re having a bowel movement or while sitting or moving), swelling, and discharge.
• Enterocolonic fistula: This type forms between your colon and intestines. You may have no symptoms at all, or you may experience diarrhea and dehydration. It can also lead to malnutrition.
• Enterovesical fistula: Occurring between the bowel and bladder, this type can lead to recurrent urinary tract infections, urine leaking from the anus, and foul-smelling urine due to pneumaturia (passing gas through urine) and fecaluria (passing stool through urine). These fistulas can occur at any point along the bowel, so they’re divided into subtypes: colovesical, rectovesical, ileovesical, and appendicovesical.
• Rectovaginal or colovaginal fistula: This fistula develops as a connection between either your rectum or colon and vagina. Symptoms include brown discharge from the vagina, pain during sex, and the passing of air, stool, or pus through the vagina.
• Enteroenteric fistula: You’ll experience this fistula between the large and small intestines, with similar symptoms to enterocolonic fistulas, including diarrhea, dehydration, or malnutrition.
• Enterocutaneous or colocutaneous fistula: Enterocutaneous fistulas involve a connection between your intestines and the surface of your skin. Similarly, a colocutaneous fistula creates a connection between your intestines, your colon, and your skin. Both can cause a foul smell, redness, pain, and leaking stool.

Each of these types of Crohn’s disease fistulas is treated in a slightly different way, so understanding the specific type of fistula that’s causing you discomfort is critical for targeted treatment and effective management.

How are fistulas diagnosed in Crohn’s disease?

If you think you’re experiencing a Crohn’s disease fistula of any kind, talk with your doctor right away. Diagnosing fistulas involves a multi-step approach, including:

• Physical examination: This is crucial, especially for visible fistulas like perianal fistulas.
• Imaging tests: MRI scans are effective in identifying internal fistulas. They provide detailed images that help in planning treatment.
• Endoscopies: Techniques like colonoscopy allow direct visualization of the inner surface of the intestine and can help identify internal fistulas.

Once you’ve got a clear diagnosis for your fistula, your healthcare team will be able to create a treatment plan that’s right for you.

What causes Crohn’s disease fistulas?

How fistulas develop in Crohn’s is usually a result of prolonged inflammation.

This inflammation can cause ulcers that extend through your intestinal wall, creating a pathway to other organs or the skin.

How are Crohn’s fistulas treated and managed?

Your doctor will tailor your Crohn’s fistula treatment plans based on the type and severity of your fistula. This treatment plan may include:

Medication

Medication for Crohn’s fistulas aims to reduce inflammation and manage symptoms. This can include antibiotics, immunomodulators, and other anti-inflammatory drugs.

Biologic therapies may also be used. These are treatments that target specific parts of the immune system to reduce inflammation and prevent fistula formation. Three-quarters of people living with Crohn’s fistulas show some benefit from biologics.

Surgery

In some cases, surgery may be necessary to repair the fistula or remove the affected section of the intestine. Some kinds of fistulas, like enterovaginal and enterovesical ones, are always treated surgically. Symptomatic perianal fistulas often require surgery as well, whereas asymptomatic ones may not.

If you have a perianal fistula, surgery may include cutting the fistula open so it heals flat. This is known as a fistulotomy. Or doctors may elect to insert setons (surgical threads) to keep the fistula open so it can drain.

Another type of procedure, called an advanced flap technique, involves covering the fistula with another piece of tissue from inside the rectum.

In some instances, fistulas may be able to be sealed with a laser or with an electrode passed through an endoscope.

What do I need to know for managing my fistula at home?

Dealing with a fistula as a part of living with Crohn’s disease can be challenging, to say the least. But effective home management strategies can significantly improve your quality of life and prevent complications.

Here are some detailed tips for managing a fistula at home:

Pain management

• Over-the-counter medication: Non-opioid analgesics like acetaminophen (Tylenol) are typically safe for people living with Crohn’s — but check with your doctor first. Avoid nonsteroidal anti-inflammatory drugs (NSAIDs) as they can cause stomach pain and ulcers.
• Warm baths: Sitting in a warm bath (without soap) can soothe perianal discomfort and reduce pain associated with perianal fistulas.

Hygiene

• Regular cleaning: Gently clean the area around the fistula after each bowel movement. Using a bidet or a soft, wet cloth can be less irritating than traditional toilet paper.
• Avoid harsh soaps: Use mild, fragrance-free soaps to prevent irritation.
• Dressings: If the fistula drains, use absorbent dressings to protect your clothes and keep the area dry. Change these dressings regularly.
• Clothing: Loose-fitting clothes and cotton underwear may be more comfortable.

Monitoring and care

• Watch for signs of infection: Symptoms like increased pain, redness, swelling, fever, or a foul-smelling discharge could suggest an infection. Contact a healthcare professional if you notice these signs.
• Dietary management: Some foods may exacerbate Crohn’s symptoms. Keeping a food diary can help you identify and avoid such triggers.
• Stress management: Stress can aggravate Crohn’s symptoms. Techniques such as meditation, yoga, or other relaxation practices can be beneficial.
• Regular check-ups: Regular visits to your healthcare team are crucial for monitoring the fistula’s status and making necessary adjustments to your treatment plan.

Frequently asked questions

How serious is a fistula?

The severity of a Crohn’s disease fistula largely depends on its location and the complications it causes.

In some cases, fistulas can be relatively benign, causing minimal symptoms. But others can lead to severe issues such as recurrent infections or abscess formation if left untreated.

What does fistula pain feel like?

The experience of pain from a fistula can vary significantly among people. Some common descriptions of fistula pain include:

• a constant, dull ache in the area of the fistula
• throbbing pain, which can worsen by certain activities like sitting or walking, especially in the case of perianal fistulas
• a sharp or stabbing pain, particularly if there’s active inflammation or infection

The intensity of the pain can also vary. You might experience just mild discomfort, or you may have severe pain that can affect daily activities.

How do I find support groups for people with fistulas?

Finding a support group for people dealing with fistulas can be incredibly beneficial. Here are some ways to find such groups:

• Hospital resources: Many hospitals have patient education centers or liaisons who can provide information about local support groups.
• Online platforms: Websites and social media groups dedicated to Crohn’s disease often have resources or sub-groups specifically for people with fistulas. These platforms (like Bezzy!) can offer both information and a sense of community.
• Crohn’s disease advocacy groups: Organizations dedicated to Crohn’s disease and inflammatory bowel diseases, such as the Crohn’s & Colitis Foundation, usually have resources for support groups.
• Community centers: Local community centers or health clinics may have information on support groups in your area.

Takeaway

While fistulas can be a challenging aspect of your Crohn’s disease, understanding their types, causes, and treatment options can empower you to manage your condition effectively.

With medical advancements and support, people living with Crohn’s disease fistulas can lead fulfilling lives. For the best success, be sure to maintain open communication with all your healthcare professionals along the way.