So...what IS a fistula, anyway?
If you’re anything like I was before this whole nightmare began, chances are you’ve never heard of a fistula. You can google around and easily find the definition, but let me save you the trouble:
“a fistula is an abnormal or surgically made passage between a hollow or tubular organ and the body surface, or between two hollow or tubular organs.”
This is the explanation my first surgeon gave me (in a somewhat pompous, self-important know-it-all tone, may I add). If you don’t have a fistula, that definition should suffice. If you do have a fistula or had one and it’s gone (lucky you!!), then you know this definition is ridiculously inadequate.
Basically, an anal fistula (cause that’s what we’re talking about on this blog!) is a second butt hole. Now, that doesn’t sound so bad if you’ve never experienced the fresh hell that is living with a fistula but, trust me, there’s a reason we only have one butt hole and having a second one is neither welcome nor desirable.
I thought it would be better to talk about what it’s like living with a fistula, instead of just giving the definition (which does NOT do any sort of justice to how life changing having a fistula can be).
Now, before I dive in I have two warnings: 1) this will definitely dive into TMI territory. If you don’t want to hear about poop, puss, butt holes or anything of the sort, stop reading...NOW. In fact, if you don’t want to hear about any of that, you should probably not read anything on this blog. You’ve been warned!
2) Some people have fistulas that leak puss and that’s all. Some people have fistulas that leak poop and that’s all. Some people have fistulas that leak both puss and poop. Lucky me, my fistula has leaked poop from day one and it used to leak puss (though that’s stopped, thankfully).
So, without further ado, what it’s been like for me living with a fistula:
Basically, for me, living with a fistula means I live in the bathroom. The great thing about a butt hole (the one we're supposed to have), is that it is specifically designed to eliminate waste from the body with minimal fuss. There are glands in the rectum that help poop slide along and outside of the body. Basically, you poop, you flush, you get on about the rest of your day.
With a fistula? The game changes completely. That hole isn't supposed to be there. It's not at all designed to eliminate waste quickly or efficiently.
For me, each BM is interesting because I never know how much clean up will be required afterward. After every BM, since I have a seton in (this is a silicone band that a surgeon placed into my fistula to drain the infection and help ensure the wound stays open), I have to have a shower and make sure to hose off my bum very well with a hand held shower head. Then I sit in a sitz bath for 15 minutes. After that it's time to dry off using a hair dryer and check my fistula to see if it's begun leaking poop and tuck a piece of tissue into the area so it can collect any poop as I'm walking around. Some days my fistula doesn't leak at all, most days it leaks for about 3 hours after each BM, some days it leaks alllllllll day long.
One thing none of my doctors warned me about when this train wreck that has become my life started was that poop is very VERY irritating when it's on the skin for any length of time. The digestive enzymes in poop also can cause the skin to crack and bleed. You can get a painful rash (diaper rash) and, of course, if you're not diligent about keeping the area clean, it can get infected...and let me tell you, having your perianal area infected is misery incarnate. In addition to these issues, my fistula is located between my vagina and anus so I have to constantly worry about poop getting into or around my vagina and causing a vaginal infection.
So, once I'm dried off and dressed and ready to get on about my day, I have to make sure to check and clean the area (if needed) every hour on the hour for at least three hours. This requires me to be close to a bathroom or within close proximity each day. If I want to travel anywhere or go out for a walk, I have to time my journey (no matter how short or long) around when I've had a BM, how much it seems to be leaking and whether or not the area has become painful and chafed from having poop on it for a prolonged length of time.
This also means that every area I'm frequently at (for example work or home) has to have the appropriate fistula care supplies - the main ones being a mirror to see the area, q-tips to scoop poop out of the area and clean around the seton, tissue to wipe poop away and coconut oil to spread around the area and act as a barrier cream. Coconut oil has the added benefit of being anti microbial, it helps disinfect an area and it is soothing.
When I'm on the go, I have to carry these supplies with me at all times or within easy reach. So, for example, if I want to go for a walk and my fistula is leaking, I have to load up my supplies in a personal hygiene bag, put that into a backpack and carry that with me at all times until the fistula has decided to stop leaking. Walks can become quite interesting as I zig-zag from bathroom to bathroom. Interesting fact I've become painfully aware of - North American public washrooms don't have bidets. They have stalls with a toilet and that's it. And, since I'm a germ-phobe, it's pretty interesting trying to clean up and not touch anything. The best case scenario is I'm able to use a washroom that has a sink and toilet right there, but that's not always possible.
In my day to day life, all of this means I have to get up an hour and a half before work to get ready and at least an hour of my time is centered around clean up (shower, sitz bath etc) and once I get to work, clean up continues for at least the next three hours if I'm lucky. If I'm unlucky and the drainage is heavier and/or lasts all day, I may have to visit the washroom every hour for the rest of the day or every half hour to clean up. As you can imagine, this much poop leaking out can become very irritating and there have been times when walking or sitting is painful because my skin has become raw and I either get a rash or the skin cracks open and starts bleeding.
And sometimes all of this cleanup isn't enough. Poop comes out of the fistula whenever it damn well pleases with seemingly no rhyme or reason, so sometimes I may be walking or minding my business when THE MOST HORRIFFIC ITCH AND DISCOMFORT I HAVE EVER FELT OVERCOMES ME. Seriously. It's awful enough to require all caps. Ok, imagine you're camping and you have to pee...but unbeknownst to you, you pee on a mosquito nest (I know, I know, just suspend your disbelief for a second and imagine). Said mosquitoes do not appreciate being peed on and about 50 or so decide to bite you around the tender perianal area and fly away. Are you still with me? Imagine the itch. The overwhelming, mind grabbing ITCH. You can't think of anything at ALL other than making this feeling go away. It consumes your every thought. Every little movement, every breath even, only serves to ratchet up the PLEASEGODMAKEITSTOP factor ten-fold. Yeah. That's what it feels like if poop sits around the area for too long and if for some God awful reason I can't get to a washroom quick enough to clean the poop off or if I don't get it all, I can be sure my skin will crack open and bleed and cause me a world of pain.
And believe it or not things have become better since my surgeon created this fistula by draining an abscess - before my fistua healed, it used to leak pus. First a LOT and slowly it tapered down to nothing. When it leaked pus? I had to keep a cotton pad tucked into the fistula all day every day to catch it. This had to be changed out every hour or two. Trying to sleep was interesting as the drainage of pus was also irritating and often I'd wake up every other hour to dry off the area and tuck a fresh cotton pad there.
I also have to be careful of what I eat because certain foods can clog my fistula (yes, this is painful). Strawberries? Nope. Pineapple? Kiss that goodbye. Corn? OUCH! Popcorn? HELL TO THE NO! (Man I miss pop corn :( )
Fun stuff huh?
None of this was explained to me by my GP or either surgeon I have spoken with about this fistula. In fact, the only after care instructions I was ever given was to sit in a sitz bath (just warm tap water. NOT helpful advice at all) All of the issues I face and care tips I've picked up, I had to learn through trial and error. I managed to pick up some helpful tips from two amazing blogs I found
http://crohniccrohns-abscessedwithibd.tumblr.com
I suffered with a high complicated front facing anal fistula that went through both sphincter muscles for 8 months before deciding to travel to Pune India to have Kshar Sutra treatment with Dr. Bapat. If you are curious about Kshar Sutra treatment, have had Kshar Sutra treatment and would like to share your experience, or are undergoing Kshar Sutra, please request to join my closed, confidential Kshar Sutra support group on Facebook Please note - everything stated is my personal opinion. I do not advise going against the advice of your doctor. I am not a medical professional. Kshar Sutra treatment is only legal to practice in India. People choosing to travel to India to undergo Kshar Sutra treatment do so at their own risk.
I suffered with a high complicated front facing anal fistula that went through both sphincter muscles for 8 months before deciding to travel to Pune India to have Kshar Sutra treatment with Dr. Bapat. If you are curious about Kshar Sutra treatment, have had Kshar Sutra treatment and would like to share your experience, or are undergoing Kshar Sutra, please request to join my closed, confidential Kshar Sutra support group on Facebook Please note - everything stated is my personal opinion. I do not advise going against the advice of your doctor. I am not a medical professional. Kshar Sutra treatment is only legal to practice in India. People choosing to travel to India to undergo Kshar Sutra treatment do so at their own risk.
and by wading through countless fistula forums (which I would not recommend doing unless you are able to handle a lot of painful, scary stories). I hope that the tips and stories I have to tell here help someone and spare them some of the angst I had to endure in just trying to figure out what was going on with my body and how to keep clean.
This post is getting kind of long, but I plan to dedicate my next one to care tips and tricks.
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