What life with a fistula is really like

15 April 2021

Bethany lives with Crohn's and developed perianal disease and a fistula in January 2018.

She tells us what impact this has on her life, the complications she has experienced, and her top tips for other people living with a fistula.


I would describe a perianal fistula as a tunnel that forms inside of your body and makes its way to your skin, causing a hole to appear.

Bethany
Living with Crohn's

The opening of a fistula will leak and if the hole closes or is blocked a build-up of pus will form and you will likely develop an abscess. This is a painful collection of pus, usually caused by infection.

In early January 2018 I started experiencing significant pain in my bum. I was not able to sit, walk or even lay down without being in severe pain and I was unable to eat or drink. As the pain got even worse, I decided to go to Accident and Emergency. At hospital I was told I had a very serious case of sepsis and a suspected perianal abscess that would require emergency surgery.  An MRI confirmed this and I had emergency surgery that evening to drain the abscess which was ten centimetres deep. I remained in hospital for ten days receiving high doses of antibiotics to get the infection under control.

Sepsis
Sepsis is not common in people with a simple fistula but can occur in more complex cases. This is potentially life-threatening.

Warning signs of sepsis include:

  • high temperature or fever, chills and shivering, or a low body temperature

  • mottled or discoloured skin

  • if you haven’t peed all day

  • fast heartbeat or fast breathing

  • sudden changes in your mental state or slurred speech

This is a medical emergency. Sepsis can be hard to spot but if you think you have symptoms call 999 or go to A&E.

The abscess had not healed for many weeks and I needed daily visits to the urgent care clinic to dress and clean the wound. That was when we discovered I had a complex perianal horseshoe fistula that tracked all the way to my pelvic floor muscles. In June 2018 I had a seton placed to allow my fistula to drain and help it heal.

Setons
Loose setons are soft surgical threads. The surgeon passes these through the opening in the skin, along the track of the fistula and out through the anus. It’s then tied to form a loop. The ends hang out of your anus, allowing the pus or infected tissue to drain away.

The seton is usually left in for several weeks and removed if the fistula is healing. Studies show that adding loose setons to infliximab treatment leads to better results for people with anal fistulas.

I think I ended up having about eight surgeries on my fistula over a period of two years.

Various surgeries included video-assisted anal fistula treatment (VAAFT) procedures. This is a little camera that cleans out the fistula track and allows doctors to see inside it. When laid open, fistula tracks often require an internal dressing, depending on how deep the wound is. This is changed daily and known as a pack. I found myself attending various walk-in clinics daily to get the packing done by a nurse. I found this aspect particularly gruelling as I was often attending a walk-in clinic at 7am and then doing a full day at work. This went on for months and months. I have also had to do this while being on holiday, trying to find a nurse abroad who can pack wounds.

I didn’t get a day off from my fistula!

In March 2020, my surgeon recommended I have a completion proctectomy (Barbie-bum surgery to some!). This would remove my rectum and, at the same time, they would remove the entire fistula track. My surgery was more complicated due to the fistula and the perianal sepsis I was still experiencing. I was warned that this would affect the healing of my perianal wound after I had my surgery.

It is so important that we speak about fistulas more.

Not a lot of people share their experience of living with one. I am sure that is because it is a bit of an embarrassing place to have something wrong, but we all have bums! I have felt embarrassed about my fistula in the past due to the drainage and fear of it leaking or smelling. This was a reality my life with a fistula. The fistula continues to affect my daily life even now it has been completely removed as it meant that my perianal wound has struggled to heal. I still experience pain and leaking from my wound, much as I did when I had a fistula. I have just started ustekinumab to help with the healing of my wound.

Despite the setbacks caused by my fistula I have still maintained and enjoyed a normal life.

I work full time and I’ve still enjoyed travelling abroad and doing all the things I usually do. Even with a fistula and the wounds that require daily packing. Yes, the fistula makes things a bit more difficult but I certainly don’t let that hold me back! I have learnt over the years what works for me and what doesn’t. Yes, there have been unexpected hospital stays and unexpected surgeries but I feel I must make the best of things. My friends, family and job are very supportive and I’m very lucky to have such a great support network around me

It is important to keep speaking about fistulas and the impact they can have on people who live with one. This way, we can raise more awareness and have better understanding of fistulas.

visit our fistula information


My top tips for perianal fistulas and leakage:

  • Epsom salt. Buy this in bulk and bathe in Epsom salt twice a day in hot water.  Avoid any perfumed soaps.  I have a sitz bath that you can place in the toilet and easily bathe the affected area.
  • Non-woven gauze is my best friend! I also bulk buy this and I use it to collect any drainage so that it does not go onto the skin.  You can change the gauze regularly throughout the day, and non-woven is the best kind.
  • Period pants.  They stop period leakage, but they are also amazing leak proof pants in general.  I found sanitary pads cause a lot of discomfort and are very expensive!
  • Keep the area as dry and clean as possible.  I got a mini handheld fan to help keep it dry.
  • Protect the skin around the area of the fistula and seton if you have one.  For me that was my bum! I always try to make sure that the area is completely clean and dry before putting any cream on.

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