5 Tips for Overcoming the Invisible Struggles of Having an Anal Fistula

I’ve written before about the ups and downs of life with an anal fistula. In this article, I’m going to talk about the day-to-day quality of life issues one can experience with a fistula. This isn’t the easiest thing to write about, but I am passionate about removing the stigma around having a fistula, and supporting those who are struggling.

For many, a fistula is a temporary problem, fixed with one surgery. For others, the fistula is much more complex and difficult to fix. Intermittent surgeries and living with seton in place become the norm. The pain and the surgeries are hard. But beyond this, the invisible (from the outside) struggle persists in everyday life. Since the symptoms are not the most pleasant, they are hard to talk about, leaving many suffering in silence.

So, what is so unpleasant?

Well, a fistula drains. A lot. The drainage can include pus, blood and even stool. Not to mention undigested seeds, nuts and corns. (I’m sure other fistula people will have other unpleasant items to add to the list.) Now, that doesn’t sound too nice, does it? Take it from me, it’s awful! These may not be the painful symptoms, but they are very distressing, especially at the beginning, when you aren’t used to them. These symptoms are both unpleasant and embarrassing. It’s hard to know what’s normal and not normal and it’s hard to know how to best manage the symptoms. How much should I wash? Should I take sitz baths? What should I do when it’s “that time of the month”? (That’s a whole other article!)

So what are my tips for overcoming these unpleasant symptoms?

1. Accept that this is (for now) your new normal. A lot of my angst came from wishing I wasn’t in this situation. I still do (I mean, who wants pus and stool leaking from a hole that shouldn’t exist?!) but at some point I had to accept that whether I wanted to deal with this or not didn’t matter. I had to. There was no other choice. This fact can sometimes bring  a certain peace to the struggle. Not every day of course. But my good days are becoming much more frequent.

2. Find what works for you and be prepared! Does gauze help? Wipes? Washing a certain way? Do certain foods get lodged in the fistula and make things worse? You’ll only find all this out by trial and error, but once you’ve got it nailed, things will get a lot easier. Indeed, time to adjust to this new normal certainly helps the process. For a long time, I didn’t use gauze. When I finally did start, I realized it helped a lot. Now I make sure to always have a supply (non-woven for me, woven aggravates!) in my bag, as well as pads and wipes. I’ve got a separate section in my bag to keep all my fistula supplies which means they can be hidden, but are always available when I need them and I’m out. I also make sure to have all these things readily available at home.

3. Make a note of where the clean toilets are in public. This is not always possible of course, and I’ve had my fair share of horrendous experiences — but if you can, remember where the clean toilets are and use those for changing out gauze and cleaning yourself up.

4. Take care of your mental health and get help if you need it! It need hardly be stated again just how distressing and upsetting these symptoms can be. Especially at the beginning. You might be constantly worrying about how to deal with it, or what happens if you are out and need the toilet, etc. You might experience an effect on your mood. Don’t be afraid to seek help. This is not an easy journey and it’s not weak to admit that you need some help.

5. Find solidarity. Finally, find people who can help you through. If you find it difficult to talk to friends or family, I can recommend two fantastic online support groups! I have found so much solidarity and help on my journey through these groups, and made some friends along the way! It’s so comforting to be part of a group of people who understand exactly what you are going through. It can be a place to vent, find tips and have a laugh! If you want some information about these groups, feel free to reach out to me.

Fellow fistula warriors, what are your tips for surviving the daily grind of drainage?