Adventures in Fistulas

I have serious Crohn’s PTSD when I hear the word “fistulas”. If you don’t know, a fistula is a tunnel, or abnormal connection, that forms from one organ to another part of your body. As I write this, I currently have a few internal fistulas that are connected between loops of small bowel. My small bowel probably looks like my hair in the morning, messy and knotted.

Another example is an enterocutaneous fistula, which is a fistula that connects from parts of your bowel to your skin. If you have a tunnel from your bowel to your skin, you basically have feces leaking on you and you have no control over it.

I lived with an enterocutaneous fistula for over 2 years. It was awful. I had this little hole below my belly button that would leak whenever it wanted, I dubbed it my little blowhole. It was so gross. I would tape gauze over it and change it multiple times a day. It wasn’t until I switched doctors and they showed me how to use a colostomy bag to collect the output. This was about a year before I received my first actual colostomy. It was foreshadowing what was to come.

Imagine you already don’t feel good every single day. Add an uncontrollable extra shit hole that leaks whenever it wants and you can smell it because gauze and/or colostomy bags aren’t really designed for fistulas. I basically tried to avoid the world. I didn’t socialize, I didn’t date, I didn’t even try. Who would want to be around me? I smelled and barely had any energy for anything. I was barely functioning.

The time came for me to finally have surgery to fix it and other issues I was having, like multiple strictures throughout my intestines. It was such a mess, the surgery took hours. However, I woke up feeling like a new person and I also had a brand new colostomy that I wasn’t expecting, but was not bothered by either.

I’m still haunted by that fistula because my quality of life was terrible. So back in 2014 when I discovered I had another fistula I was pretty persistent in telling my doctors I needed it fixed ASAP.

This fistula was a bit different. It wasn’t enterocutaneous, it was vaginal. I will explain as best I can. This fistula connected my rectum to my vagina, meaning every time I pooped, I had output through my vaginal canal.

The number one cause of a vaginal fistula is injury during childbirth. The second cause is Crohn’s Disease. The tissue in the rectum is inflamed and therefore weak, making it susceptible for an abscess or fistula to form.

I learned a lot in the years after my first fistula and I knew I had a say in my care and I didn’t have to live with this. I went to the ER the next morning and it turns out I was really sick and needed an emergency blood transfusion.

I ended up having surgery a week later and the vaginal fistula was taken care of, but I did end up with a colostomy again. However, I was very aware that this would happen and was 100% okay with it. I prefer having a colostomy to not having one.

If you believe you have a fistula, talk to your doctor. Discuss your treatment options and remember that you are your own best advocate. Don’t let it be brushed off, you have the right to ask for aggressive treatment and you always have a right to a second opinion.

With my first fistula, I let my doctors push it to the back burner and I suffered because of that. Maybe to my doctors, it wasn’t a priority physically, but mentally it did a number on me. I’ve learned through my experiences that it’s okay to speak up and say that this quality of life is unacceptable and something needs to be done to fix it. If you take anything from this story, I hope it’s this; You have the right to demand better care. Adjusting to the status quo isn’t and shouldn’t be allowed.