Living With A Fistula - A Literal Pain In The Butt!!
Last updated: April 2023
Fistulas, a literal pain in the butt. If you haven't heard of a fistula don't worry, neither did I until I, unfortunately, was diagnosed with one. Let's talk about what it's like living with one, more specifically a perianal one, and how to find joy in the darkness!
According to the Cleveland Clinic, "An anal fistula is a small tunnel that connects an infected gland inside the anus to an opening on the skin around the anus. Symptoms include pain and swelling around the anus." This is 100% correct in my experience. Fistulas can happen to anyone but they're a side effect of hidradenitis suppurativa due to recurring abscesses.1
I was officially diagnosed with a perianal fistula in May of 2021 after an MRI and months of symptoms but I was experiencing symptoms since December of 2020 after a painful perianal abscess drained. I experienced drainage from the area and there was a little hole at the opening of the anus that was extremely tender. Sometimes the hole would close over and that is when the pain was at its worst.
Fistulas are mentally and physically challenging
Living with a fistula can be tough, both mentally and physically. I always have to carry gauze to put in between my bum cheeks and I need to use a peri bottle to clean after bowel movements so I always have to be prepared. It's tough adjusting to my new "normal" but my support system helps me through the bad days.
It can also be embarrassing due to the taboo area it's located. I found being open and honest about it on my Instagram helped me get through it and it helped me connect with others who are suffering.
In my case, my fistula was intersphinteric which means it passed through the sphincter muscles in the bottom, and doing a standard fistulotomy (laying the fistula open to remove it) was too risky as it could cause incontinence. As a 24-year-old girl, this news was terrifying. I felt so alone and scared of the outcome. I almost began to grieve the life I thought I was going to have. In the grand scheme of things, this seems like an appropriate response but I refused to let it keep me down for too long!
A change in persepctive
I had my first surgery in July 2021 and they inserted a cutting seton which will slowly cut through the sphincter muscles to prevent incontinence but I will need this tightened every 3-6 months for the next few years. It's scary knowing your 20's will be spent under the knife a lot of the time but I trust that it's all for the better and it's just the journey to a pain-free life!
This whole saga has totally changed my perspective. In a way, I'm grateful for my chronic illness as it's made me a better person and allows me to seize every moment and I am so grateful for pain-free days! For me, speaking so openly about it on social media took away the fistula's power of controlling my life. I was in control and I wasn't scared to share my story as it could help others suffering.
If anyone is suffering from a fistula, don't suffer in silence. You can check out my Instagram and follow along on my fistula journey there. Nothing is too embarrassing that I won't speak about!
When you need to vent about HS, who do you turn to first?