After years of living in intense pain and going through several misdiagnoses, Tina Aswani Omprakash found out she had Crohn’s disease. Her condition was so severe that she needed emergency proctocolectomy surgery (removal of the colon and rectum), and she was put on biologics.

“I knew Crohn’s was an intense disease, but I did not realize what it takes to really, truly fight for your life and what it takes to get your life back after so many surgeries and flare-ups,” she says.

She developed a fistula, an abnormal opening that forms in the wall of the intestine and connects to other tissues or organs in the body. Fistulas are a common complication of Crohn’s that can occur between the vagina and the rectum or anywhere between the intestine and the skin.

A fistula is often noticed only after it breaks through the surface of the skin, which is what happened to Omprakash.

“One of my biggest complaints back then was that I had urinary tract infections often, and diagnostic tests showed E. coli, a gut bacteria, in the urine. So that was an indication I had a fistula, but I didn’t realize until it broke through the surface.”

If you have Crohn’s disease, you already know that managing complications can sometimes be challenging. Fistulas are one such example. Over time, fistulas can lead to pain and infection. But treatment options exist.

Some Common Symptoms of the Complication

There are several different types of fistulas. With Crohn’s disease, a deep ulcer or a sore in the inflamed intestinal tract can spread and tunnel into deeper tissues — most commonly in and around the anus — resulting in a perianal fistula. About 25 percent of people with Crohn’s develop fistulas, per the Cleveland Clinic.

Typical symptoms of an anal fistula can resemble the symptoms of an anal abscess, and may include:

Pain and swelling, or even a palpable lump around the anus
Liquid or foul-smelling pus that drains near the anal opening
Red, itchy, or sore skin surrounding the anal opening due to persistent drainage
Passing pus or blood in stool
Fevers, chills, and fatigue
Pain with bowel movement

See Your Doctor for a Diagnosis and Treatment

If you suspect that a fistula has formed, alert your doctor and schedule a physical exam as a first step, says Jean Ashburn, MD, a colorectal surgeon at Wake Forest Baptist Health in Winston-Salem, North Carolina. Following this, a Crohn’s disease specialist will schedule any necessary testing, which may include:

Blood tests to detect infection
Special imaging tests, such as computerized tomography (CT) scans or magnetic resonance imaging (MRI) scans to view the fistula

The surgeon may also want to perform an anoscopy, says Dr. Ashburn. For this exam, the doctor inserts a small tubular instrument called an anoscope into the anus to view problems in the anal canal.

The first line of treatment used to be antibiotics for small, simple fistulas. But newer data supports the use of biologic drugs that block tumor necrosis factor alpha (TNF-alpha), a protein that can contribute to inflammation, says Adam Ehrlich, MD, MPH, an associate professor of medicine at the Lewis Katz School of Medicine at Temple University in Philadelphia.

If Surgery Is Needed

Surgeons may decide to drain abscesses that they find during an exam while you're under anesthesia. They may also place a seton, which is a heavy suture or latex loop, to prevent new abscesses from forming, says Shannon Chang, MD, gastroenterologist and assistant professor of medicine at NYU Langone Health in New York City. The seton typically stays in place for “months to years,” she says.

In severe cases, patients may benefit from having an ostomy to allow the anal area to rest and heal, says Ashburn. This procedure involves diverting the intestine to an opening on the abdomen called a stoma, where waste can drain into a bag. This surgery requires a short hospital stay and can be reversed after the anus heals. Or, “if the patient is happy with the ostomy, it can be kept for as long as he or she likes,” she says.

In Omprakash’s case, she needed seven surgeries almost back to back over a one-year period and a prescription for biologics, so recovery was complicated and slow, taking well over a year. She was taking the new drug for about eight months before the fistulas finally closed up.

“The J-pouch was causing the fistula because all these ulcers were coming into the vaginal wall. So they removed the pouch, but I had to have several surgeries to correct the excision, and they pulled out several pieces of J-pouch that had been left inside,” she said. “I also had a massive pelvic abscess with a fistula emerging from it they had to remove. The fistula was heading for my tailbone and could have paralyzed me, so they removed it.”

Along with these corrective surgeries, Omprakash has finally found a drug that works for her to prevent a recurrence of fistulas.

New Frontiers in Treatment for Fistulas

Ligation of the intersphincteric fistula tract (LIFT) is one of the latest advances in surgical techniques used for complex fistula treatment. LIFT is a two-stage treatment process that enables access to the fistula between the sphincter muscles so surgeons can avoid cutting them. First, a seton band is placed into the fistula tract, forcing it to widen over time. After several weeks, the infected tissue is removed and the internal opening is closed.

“It has a 50 percent success rate,” says Phillip Fleshner, MD, director of colorectal surgery at Cedars-Sinai Medical Center in Los Angeles. “You make a little incision on the outside, and you don’t injure the muscle, two very important things in Crohn’s, because that could lead to wounds that don’t heal and interfere with control of stool.”

There are several other novel therapies currently under development to treat fistulas, including stem cells. These cells can transform into almost any type of tissue in the body, and they could be one treatment option for fistulas.

A research review published in January 2021 in the journal Stem Cell Research & Therapy involving more than 1,200 people with Crohn’s found that those treated with stem cells had significantly higher healing rates from fistulas than those who were not.

The stem cell therapy darvadstrocel (Alofisel) has been approved in Europe for the treatment of complex perianal fistulas in adults, and is awaiting approval in the United States. It targets the proliferation of activated lymphocytes (white blood cells that form a main part of the body’s immune cells) and reduces inflammatory cytokines (small proteins).

In a study presented at the 2022 meeting of the European Crohn’s and Colitis Organization, 65 percent of Crohn’s patients with fistulas showed clinical remission at six months.

More Awareness Equals Better Management

Omprakash has been fistula-free for nearly three years. Today she is a patient advocate, with her own blog through which she aims to reduce the stigma surrounding Crohn’s and fistulas. She also runs two support groups for Crohn’s, one for women and one for teens, in New York City, to help people deal with the emotional impact of living with Crohn’s and its side effects.

“Having a fistula was one of the worst experiences. No one knows you have it, but it consumes you,” she says. “As a woman, it really tears apart your womanhood. It hits such a private area and feels very violating."

She says the best way to manage the disease is to have a strong connection to your doctor, and be sure he or she is really listening to you, and not dismissive of your symptoms. Second opinions do help, and if you’re not making progress with a line of treatment after a few months, it may be time to switch doctors or treatments.

Treatments have come a long way since Omprakash was diagnosed; she says there is a lot more hope for patients with fistulas today and many more pathways they can pursue.

“At the end of the day, it’s about how you approach it,” she says. “I’ve accepted that I have multiple conditions, and it’s about survival, maintaining a good quality of life, and being as 'normal' as I can. At least half the battle is accepting the condition.”