Living with Fistulas — A Common Complication of Crohn's Disease
Published: August 2, 2024
Fistulas are a common complication of Crohn's disease, affecting approximately 30% of patients during their lifetime1. Fistulas can be very challenging, causing not only physical pain, but also considerable anxiety and emotional stress.
By partnering with your care team, equipping yourself with information, and finding support, you can go a long way to helping yourself live better with the complexities of the condition.
Let’s take a look at the different types of fistulas, treatment options, and strategies that can help people living with fistulas navigate their healthcare journey.
What Are Fistulas?
A fistula is an abnormal connection or tunnel between the intestines and a nearby organ or skin. Fistulas form when inflammation causes sores or ulcers on the inside wall of the intestine or nearby organs. These ulcers can extend through the intestine and create a tunnel to the skin or other organs, leading to the formation of a fistula.
Types of Fistulas
Fistulas can be classified into several types based on their location and the organs. Type of fistulas include but are not limited to these:
Perianal fistulas are the most common type of fistulas in Crohn’s disease. These fistulas connect the inside lining of the rectum with the skin surrounding the anus. They can be painful especially if there is an abscess or inflection at the site and they can cause symptoms such as leakage of stool, puss, or blood.
Bowel-to-bladder fistulas connect the intestines to the bladder and can cause urinary tract infections with symptoms such as burning during urination, cloudy urine, or blood in the urine.
Bowel-to-skin fistulas connect the intestines to the skin and can cause symptoms such as pain, swelling, and discharge.
Bowel-to-vagina fistulas connect the intestines to the vagina and can cause symptoms such as passage of gas or stool through the vagina.
Treatment Options
Treatment for fistulas often involves a combination of medical and surgical interventions. Medical therapies aim to manage symptoms and reduce inflammation. Medical treatments for fistulas include antibiotics, for example, metronidazole and ciprofloxacin, that can treat infections and decrease drainage. Biologic medications are also used to reduce drainage and help with healing.
Surgery can also play an important role in treating fistulas. Surgery can have two main benefits: it may completely close the fistula or it can help manage the condition by reducing infection and inflammation, making other medical treatments more effective.
For perianal fistulas, seton placement is a commonly used procedure where a soft surgical thread is passed through the fistula to drain pus and infection. It can be left in place for an extended period of time. Once a combination of seton placement and medical therapy has successfully controlled the infection and inflammation and remission is achieved, a colorectal surgeon may recommend further treatment. Options may include removal of the seton, a fistulotomy where the fistula is cut open to promote healing from the base to the surface, or a more complex surgical procedure.
Two more complex procedures for perianal fistulas include an advancement flap, where a flap of healthy tissue is folded over the fistula opening to close it, and a LIFT (Ligation of the Intersphincteric Fistula Tract), where the fistula tunnel is cut in two with both ends stitched closed. There are a number of factors involved in considering these procedures so discuss with your gastroenterologist and colorectal surgeon the best option for you.
More complex fistulas usually require more extensive abdominal procedures and should be discussed with your colorectal surgeon and gastroenterologist. It is important to note that not all fistulas require surgery. More in-depth information on medication and surgery options is provided on our Fistulizing Crohn’s Disease web page.
Coping with Fistulas
Living with a fistula can take an emotional toll. It's common to experience stress, anxiety, concerns about body image, and worries about intimacy. While seeking medical attention, it is also important to take care of your mental and emotional well-being.
Here are some tips for coping with fistulas:
Be open with your healthcare team: Your doctors are there for you, but they need you to share what's really going on — the good, the bad, and the uncomfortable. Be honest about your physical symptoms, your emotional well-being, and your concerns and questions. Don’t be afraid to speak up if you need extra support or a referral to a specialist like a therapist. Counseling can provide healthy coping tools personalized for you.
Seek support: Connect with other people who have fistulas. The Crohn’s & Colitis Foundation has support groups and an online community where you can share experiences and get advice and support from IBD experts and other patients. You can also join our Facebook group for people who have fistulas.
Make space for self-care: Engage in activities that bring you joy and help you relax, such as yoga, meditation, or hobbies. Make self-care a priority by scheduling it into your routine.
Stay informed: Knowledge can help you take control of your health journey. Stay up to date with the latest information and resources on fistulas and Crohn's disease through the resources we provide on our Fistulizing Crohn’s Disease web page which also includes our new video, patient stories, and more.
Living with a fistula can be challenging. But by staying informed and being open about your symptoms and needs, you can find support and let your healthcare team guide and care for you as a whole person.