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Let’s Talk About Abscesses, Fissures & Fistula!

Perianal Fistulizing Disease - COGI

Perianal Fistulizing Disease - COGI

Crohn’s disease is one type of inflammatory bowel disease (IBD). IBD is a group of conditions that affects the gut, which is also called the digestive system. The digestive system contains the organs that run between the mouth and the anus (the bottom), including the esophagus, stomach, small intestine, and large intestine or colon.

Crohn’s disease can cause inflammation (redness, swelling, and ulcerations) in the organs in the digestive system. Inflammation in the last part of the colon (the anorectum) can lead to abnormal connections between the bowel and the skin, called fistula.

Crohn’s can also lead to inflammation outside of the gut, called extra-intestinal manifestations, such as inflammation of the joints, skin or eyes.

Perianal disease affects about 10% of people who have Crohn’s disease.1

African American and Hispanic patients are more likely to need treatment for perianal disease.2

Symptoms of perianal disease include3:

  • Fever
  • Incontinence (loss of bowel control)
  • Leaking of blood, mucus, or fluid from the bottom
  • Pain in the bottom
  • Pain when going to the bathroom

Don’t wait to see a doctor about perianal disease symptoms. There are treatments that can help and prevent them from getting worse.

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Complications Symptoms Treatments

What Is Crohn’s Perianal Disease?

The perianal area is the area of the body around the anus (the butthole) and the last part of the colon (the rectum). Crohn’s disease can affect the internal muscles, fat and/or skin around the anus, which is called perianal disease.
This can affect both men and women.

Perianal disease can include any or a combination of these complications1:

Perianal Abscess: A pocket of pus under the skin that can remain under the skin or burst outside on the skin through an abnormal tract called a fistula.2 An abscess feels like a hard, painful lump under the skin and often causes the skin in that area to be red and hard. Abscess can also cause fever, chills, and an overall feeling of illness.

Anal Fissure: A split or a tear in the skin of the anus, which can cause bleeding and pain during a bowel movement (using the toilet).

Perianal Fistula: An abnormal tunnel or connection that develops between the anus or rectum and the skin around the anus. This abnormal connection can cause stool, blood, and pus to pass from the gut into the skin. The area where the fistula exits out of the skin can get painful and irritated. A fistula can be associated with an abscess.

Anorectal Stricture: A narrowed part of the rectum or anus that makes passing stool difficult. 

Anorectal Ulcers: Open sores or wounds on the skin or in the anus, which can cause bleeding or pain.

Perianal Skin Tag: Thickened, swollen skin flaps around the anus that can cause discomfort. Stool can attach to the tag and cause irritation and itching. It is important not to have them removed by a surgeon because it can damage the anal area.

What Is Fistulizing Perianal Disease?

Perianal fistulas are a complication of Crohn’s disease that can happen before the diagnosis is made (it can be the first sign of Crohn’s disease) or can develop later after a diagnosis of Crohn’s disease. Up to 1/3 of people living with Crohn’s disease develop a perianal fistula. Fistulas are abnormal tracks between the anus and/or rectum and the skin around the anus. Fistula can occur with or without a perianal abscess. 

 

Perianal fistula, with or without an abscess, often needs a combination of medication and surgery to treat it. Unfortunately, fistulas are difficult to heal. Sometimes, after a fistula is healed, a new one can appear.3

What are the Symptoms of Fistulizing Perianal Disease?

What are the Symptoms of Fistulizing Perianal Disease?

 

The opening of the fistula to the skin can feel like a little painful lump around the anus. It can leak or drain stool, pus, or blood all the time or only from time to time.

You might feel embarrassed by these symptoms, but remember: 

  • Your doctor has seen and heard it all. 
  • You won’t surprise or shock them by describing your symptoms. 
  • Telling your doctor how you are affected by symptoms will give them more information they can use to help you get better.
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fistula-distress

Some of the signs and symptoms that can occur with perianal disease are4:

  • Abnormal discharge (leaking of blood, mucus, or fluid from the bottom)
  • Pain around  the anal area
  • Pain while going to the bathroom (called dyschezia)
  • Fever, chills
  • Malaise, fatigue

Some of the emotional symptoms can include4:

  • Emotional upset
  • Feeling dirty or not clean
  • Feeling dependent on other people
  • Poor self-image
  • Worries about leaving the house or being away from a bathroom
  • Worries of smelling bad
  • Worries about soiling clothes
  • Embarrassment and/or shame

If the fistula is complicated with an abscess, symptoms include: 

  • Pain in the buttock area or “internal pain” near the anus
  • Buttock pain when sitting down 
  • Hard, painful lump under the skin 
  • Fever, chills, 
  • Malaise, fatigue
  • Abscesses can burst open and drain pus, which usually takes away the pain

Perianal disease can also affect quality of life. People may also be coping with4:

  • Difficulty with work or securing work
  • Increased costs of medication, surgery, or other treatments
  • Problems with sex and intimacy
  • Trouble sleeping or exercising
  • Painful bathroom usage
fistula-insomnia
How A Fistula Forms

How A Fistula Forms

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Fistulas can form in different ways:

  1. Inflammation and ulcers in the anus and/or rectum area create a hole and dig a tunnel/ a track into the muscles and fat around the anus and to the skin. That creates a connection between the inner gut and anus to the skin.
  2. Inflammation and ulcers in the anus and/or rectum area create a tunnel into the muscles and fat under the skin, but stop before reaching the skin. Stool and bacteria from the gut can build up in the fistula tract under the skin and create an abscess. An abscess is a collection of pus. That abscess can “pop up” and open up to the skin and create a fistula to the skin. Now there is an open tract between the anus/rectum, the abscess, and the skin.
How are Perianal Abscess and Perianal Fistulas Treated?

How are Perianal Abscess and Perianal Fistulas Treated?

Treatment of these conditions needs the help of both a gastroenterologist and a colorectal surgeon, and involves separate steps.

Perianal abscess. If an abscess is small and found early, it might be treated with antibiotics and not need immediate surgical intervention. An antibiotic may treat the infection by killing the harmful bacteria and clearing up the pus collection. 

Abscess drainage. A larger abscess needs to be drained by a surgeon, which means the abscess needs to get opened up to the skin to let the pus that’s inside of it come out. A doctor will numb the area of the skin above the abscess, so there won’t be any pain. A small cut is made in the skin above the abscess and in the abscess. The pus is then emptied out. A gauze dressing is applied above the open skin area and allows it to heal. This is usually done as an outpatient procedure. 

Setons. A seton is a plastic thread that’s put through the fistula tract from the inside opening of the fistula (inside the anus/rectum) to the outside opening of the fistula on the skin. The goal is to keep the fistula open for a while, so that no new abscess is formed, and to give the medication time to start working to close the fistula. Keeping the fistula “open” seems the opposite of healing; however, the seton actually helps with “balanced “ healing. Closing the opening along the entire fistula tract avoids “patchy” healing of only some of the tract, which can lead to another abscess. 

The surgeon will pass the seton through the fistula after draining any abscesses. It may be kept in place for anywhere from several weeks to many months, while the fistula heals. The surgeon will remove it once the fistula starts healing with medication. Sometimes the seton is left in place if the fistula keeps draining or if there is a higher risk of having another abscess. 

Medications. Keeping the inflammation from Crohn’s disease under control is important in managing perianal disease. There are several types of drugs used to treat Crohn’s disease. A doctor will help you in deciding which drugs may work best for your symptoms. It may also be helpful to take more than one drug at a time. Some medications are more effective at treating perianal disease than others, and sometimes several medications are needed to close the fistula (typically, a combination of an anti-TNF, an immunomodulator, and antibiotics). 

Some medications may also help a fistula to heal. These are biologic medications, which are given either as a shot or with an IV. They can help manage both, the Crohn’s disease and the perianal fistula. There are a few different biologic drugs available and a doctor will help in deciding which one might work best.

Some of the medications that might be used in Crohn’s disease are:

  • Biologics (such as anti-TNF like Remicade, Humira, Cimzia; an anti-IL 12/23 like Stelara; or anti-integrin like Entyvio; as well as the biosimilars of these medications)
  • Immunomodulators (such as Azathioprine [Imuran], 6-mercaptopurine, methotrexate, cyclosporine)
  • Steroids (such as Budesonide or prednisone)

Surgery. If a fistula isn’t healing with medical treatment and drainage of the abscess, different advanced surgeries (like a LIFT or FLAP) might be indicated. For a small proportion of patients with a very superficial fistula (a fistula that does not involve the muscles around the anus), surgery may be used to open up the fistula tract to the inner lining of the anus. 

Fistula repair is a complicated surgery and is best done by a colorectal surgeon that has experience in Crohn’s fistula repair. For complex fistula, finding someone who specializes in working with more challenging cases will be important.

Ostomy surgery. For some people, perianal fistula can keep causing severe symptoms or repeated abscesses despite medical and/or surgical treatment, and these symptoms can cause a lot of distress to the patient. Stool in and around the anus can irritate the fistula and make the symptoms of pain worse and break down the skin around the anus. In these cases, a surgery of the bowel called an ostomy can be done so the stool doesn’t pass through the anus anymore. This  can “give a break” to the anus and rectum, allowing the fistula to heal. 

To create an ostomy, a small part of the intestine is brought through the abdomen to the skin (called a stoma). An appliance (sometimes called a bag) is worn over the stoma to collect the stool (poop). This is called fecal diversion: taking the stool away from the anus and into the bag outside the skin of the abdomen, to let the fistula heal, or at least to decrease the symptoms of the fistula. This surgery may or may not be reversible: if the fistulas heal, the ostomy is removed to have bowel movements go through the anus again. If the fistulas do not heal, the ostomy can be permanent. 

Surgery to remove the rectum and the anus is another option. This is called a proctectomy. When this surgery is done, the ostomy will become permanent.

What To Do If You Think You Have Perianal Crohn’s Disease

What To Do If You Think You Have Perianal Crohn’s Disease

1

Don’t ignore the signs, especially lumps, pain, redness around the anus and/or passing blood, or pus like stool around the anus.

2

Talk to a trusted doctor or other healthcare professional about symptoms, don’t be shy!

3

Ask for the tests that can help find an abscess or a fistula, like an MRI.

4

Work together with the doctors (gastroenterologist and surgeon) to get treatment started.

5

Keep the doctor up-to-date on how treatment is going, and let them know if it isn’t getting better.

Emotions and Intimacy With Perianal Disease

Emotions and Intimacy With Perianal Disease

Perianal disease is difficult and upsetting for many different reasons. It is painful and can affect quality of life. It can also make everyday situations, from changing clothes in a locker room to having sex, embarrassing. 

The first thing to know is that you didn’t do anything to cause it. Diet or stress or trauma to the anal area (child birth, anal sex) are not a cause of Crohn’s disease or perianal disease. 

For some people, working with other specialists may be helpful. This can include a physical therapist, a wound nurse, a mental health professional, or other healthcare providers. 

It may feel very lonely having a fistula, and connecting with other people who live with this condition may be comforting. Finding others over social media or an online or in-person support group may help. Other people who have “been there” can offer a listening ear or even tips and tricks to help solve the day-to-day problems that may come with fistulizing disease.

Intimacy is another topic that’s a big part of living with fistulizing disease. It might be difficult, but asking the doctor about what is recommended or what should be avoided is important, whether dealing with perianal fistula or fistula extending to the vagina. There may be a need to either avoid having sex at certain times, such as before or after placing a seton or having surgery. Antibiotics or other treatments might also be recommended after sex.

fistula-intimacy
Looking to the Future

Looking to the Future

There are more treatments being studied for fistulizing disease.5

Hyperbaric oxygen (HBO) therapy. In this treatment, patients go into a pressurized room or tube and breathe pure oxygen. It’s used to heal wounds, which is why it’s thought that it might work for treating fistulae. 

JAK inhibitors. Janus kinase (JAK) inhibitors are the newest type of drug for treating IBD. These are small molecules, which means they are pills that are taken by mouth. There are some approved already but they are still being studied to know how well they might work for fistulizing Crohn’s disease.6

Mesenchymal stem cell (MSC) therapy. Stem cells from fat tissue injected around the fistula area are another treatment under study to close fistula. Some trials have already been done and had good results. More work is being done to understand for which patients this treatment might work.

Real Talk

Perianal disease is embarrassing. It’s uncomfortable. It’s totally inconvenient and disruptive. It also won’t go away on its own. Getting to the doctor and being diagnosed is the first big hurdle. Understanding as much as possible about Crohn’s disease and fistulae will also be helpful in advocating for yourself.

There may be some choices as far as treatments go. Decisions should be made together with the doctor. It’s important to tell them about everything that’s going on, especially how your life is affected and if there’s any problems with insurance coverage. Healthcare providers can help beyond just prescribing medications, if we tell them about the problems.

Remember that you are not alone. It may be helpful to talk with other people who live with a fistula. Support groups, either online or offline, are a way to meet others who are living with perianal Crohn’s disease.

There are going to be many more questions along the way. Remember that it’s important to get answers: you deserve them. Getting the right information will help to get diagnosed, get treated, and get back to living life.

Written & Edited by:
Amber Tresca, Melodie Narain-Blackwell

Medically Written & Reviewed by:
Dr. Aline Charabaty

This Patient Education has been funded by a Grant Provided by

References

References

1. Safar B, Sands D. Perianal Crohn’s disease. Clin Colon Rectal Surg. 2007;20(4):282-293. doi:10.1055/s-2007-991027.

2. Feroz SH, Ahmed A, Muralidharan A, Thirunavukarasu P. Comparison of the efficacy of the various treatment modalities in the management of perianal Crohn’s fistula: A review. Cureus. 2020;12:e11882. doi:10.7759/cureus.11882.

3. Park SH, Aniwan S, Harmsen WS, et al. Update on the natural course of fistulizing perianal Crohn’s disease in a population-based cohort. Inflamm Bowel Dis. 2018;25(6):1054-1060. doi:10.1093/ibd/izy329.

4. Mahadev S, Young JM, Selby W, Solomon MJ. Quality of life in perianal Crohn’s disease; What do patients consider important? Dis Colon Rectum. 2011;54:579-585. doi:10.1007/dcr.0b013e3182099d9e.

5. Yzet C, Brazier F, Sabbagh C, Fumery M. Managing complex perianal disease after anti-TNF failure: Where to go next? Curr Res Pharmacol Drug Discov. 2022;3:100081. doi:10.1016/j.crphar.2022.100081.

6. ClinicalTrials.gov. Efficacy and safety of Filgotinib in the treatment of perianal fistulizing Crohn’s disease. Accessed April 2, 2022. Available at: https://clinicaltrials.gov/ct2/show/NCT03077412.

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