Anal Fistula Treatment #6

On Thursday, I had my sixth treatment for my complex anal fistula. This was a relatively small procedure, an in-office "deroofing" (as my CRS puts it) of a part of my fistula that has not healed completely. The procedure itself was a little uncomfortable, but the first where I was awake - the worst was hearing the tearing/sizzling sound my flesh was making as she was cutting the skin. I've been doing ok, I couldn't really sit on the first day but I've been able to go back to work after a long weekend, I was even able to sit at the movies! Once this heels, I'm hopeful that I will have definitive treatment and get my setons taken out... I'm not sure what she's going to do... the flap? 

I'm feeling so disappointed that I'm looking to another summer of limited activity, I don't feel particularly comfortable swimming in a lake or public pool with open/draining wounds. Biking is completely off of the table (it's been nearly two years since I've been able to ride). When you live in an area where you only have 3 precious months of nice weather, it's a real bummer to miss out on another summer. Life is short. 

I'm reminded that exactly a year ago, I underwent my first treatment not really knowing what I was getting myself into. I don't have the 10 inch drain anymore and hopefully, I never have to go through something like that again, but I'm still going through this. I'm amazed at how we're able to adapt to lousy situations, it's just like my life is supposed to be inconvenienced by my butt all the time, there is no other way. 

Anal Fistula Treatment #5

Here I am again, a few days post-surgery, arguably, at the worst spot you can be (in terms of physical and mental pain) in recovery and I'm still in the dark. For the last two weeks leading up to what I hoped would be definitive treatment for my anal fistula, I started to feel soreness around my perianal area. For those of you non-fistula sufferers, that's the area around your anus and taint - like the bottom of your butt cheek. I knew something was wrong, I went to see my surgeon's NP and she wasn't able to feel any swelling or collection which made me hopeful that it was nerves regenerating but deep down I knew it wasn't right. 

On the day of the surgery, I went in to the hospital still holding onto the hope that the soreness was nerves regenerating, so I was disappointed when my CRS told me that I'm beyond the point of "this is normal" and that she wants me to go see a GI for additional testing. As it turns out, despite having a colonoscopy in December, you can have a healthy rectum and digestive tract but can have a form of crohn's that manifests itself through fistula tracts and abscesses. The worst part of having perianal disease (crohn's) is the idea that I could potentially deal with flare-ups of this shit for the rest of my life. 

Before I was rolled into surgery, the anesthesiologist gave me the drug cocktail which they love to equate to a margarita and despite feeling dangerously calm and numb, I was crying from disappointment. Not ugly crying or calm, three month long relationship break up cry on reality TV style, but water coming out of my eyes with my brain knowing I'm disappointed but not feeling the sadness or despair that comes with it. 

When I woke up from surgery and the "margarita" wore off and I could not stop crying. I don't think I've ever felt this disappointed in my life, or at least since Yolanda (Hadid) Foster left RHOBH. It certainly didn't help that it felt like there was a very large item in my ass that felt like it was going to tear me in half. My surgeon told me that she found another area of swelling that is now an open wound and that she merged two setons into one. My left ass cheek now looks like Deadpool's face (without the mask) because I have so much scar tissue. 

Overall, this surgery is certainly less painful than my other ones, but I'm feeling completely emotionally burnt out. On the way to my surgery, I looked at people walking on the street and felt envious. While they all deal with their own health problems and life struggles, odds are that they are not dealing with THIS. I feel so alone. I look healthy and I'm able-bodied, but every part of my life and what I do is controlled by my butt. I even get bored of complaining about how unhappy this has made me because there is just no point in continuously repeating how disappointed I am. You ONLY YOLO ONCE and the last year of my life has been spent in limbo.

Anal Fistula Treatment #4 - Holes

I've been slacking at writing this fourth part, but considering I'm only a few days away from my fifth surgery, I figured it's time. It's worth mentioning that since my last post, I had a colonoscopy which showed that everything was normal, so no crohn's, just unexplainable bad luck when it comes to my butt. I went into my fourth surgery two days before Thanksgiving. I went into the surgery expecting the giant hole that my CRS warned me about, but nothing can ever prepare you for the reality. 

At this point, I feel like a pro laying in that hospital waiting room in that big gown, grippy socks and blue hat. I know to tell the nurses that my veins are stubborn, and despite the warning, I'm always watching them prod around my veins on my left and right arm. I know that channel 53 is A&E and that at the time I'm at the hospital, there will always be a Dog the Bounty Hunter episode on (WHY CAN'T IT BE HOARDERS OR  WHY CAN'T THEY HAVE THE FOOD CHANNEL OR SOMETHING?!). I get wheeled into the surgery room with a friendly anesthesiologist talking to me about the margarita drug cocktail that I was just given and to brace the bump from being rolled over the door threshold. 

Before I left the hospital, my CRS told me the new wound wasn't "that bad"... WHAT WAS SHE LOOKING AT? DID SHE CUT SOMEONE ELSE? When my boyfriend first looked at the wound (now freshly adorned with a seton... making the total seton count 3!) he said that he couldn't see the bottom and that it was possible as deep as a shot glass. At first, it felt cold and numb to have someone change gauze. But as the drugs wore off and I regained feeling, pulling gauze stuck to a fresh wound is some of the worst pain I've ever felt. The kind that makes you see red and get dizzy. For the next three weeks, I had my BF pull pieces of bloody gauze until it was shallow enough for me to press gauze into the area. 

Beyond the discomfort from the gauze changes, the pain was impossible to control. I wasn't able to sleep for more than a few hours at a time for weeks because I wasn't able to lay on my back and moving would wake me up. It took weeks before I was able to sit normally. I've been hesitant to use my prescribed pain medication because I've seen too many episodes of Intervention and I don't want to cause constipation, but it turns out that was my CSR prescribes to me (Tramadol) sucks and makes me feel like I'm hanging on the side of a cliff casually puking. 

I saw my CRS surgeon again at the beginning of January and she ordered another MRI. Because we are now in 2018, I had to pay over $1000 out-of-pocket with my insurance which stings about as much as having to deal with an anal fistula for the last year of my life. For the first time since March 2017, the MRI showed GOOD NEWS, no new collections, no new fistula tract, everything was under control and getting smaller. When I read these results, I was so happy, I've never had good news dealing with my treatment. 

It's currently almost the end of February, I'm currently living as "comfortably" as I can considering I have three draining setons, open wounds that sometimes like to be a little angry with some cellulitis and I'm about to dive right into a fifth surgery. I'm hoping that this is the last surgery with definitive treatment, but I won't know until I wake up in that hospital bed. At this point, I'm just so tired of always leaking foul fluids and always being conscious of how my butt feels. I have to give it up to the strength of human adaptability because I don't remember what it feels like to have a "normal" life anymore but I'm just living my life with the inconveniences. 

Anal Fistula Treatment #3 - The Two Setons

It occurred to me that I haven't described what a seton is - the Internet says:

a surgical-grade cord through the fistula tract so that the cord creates a loop that joins up outside the fistula. The cord provides a path that allows the fistula to drain continuously while it is healing, rather than allowing the exterior of the wound to close over.

I just describe it like a medical grade zip tie that's red like the color of HELL and SATAN and SANTA that continuously allows my fistulas to leek foul smelling discharge that's either red, yellow, brown and has stained every pair of underwear that I own. 

After the third surgery at the end of September, I now had two setons and a new open wound. There is something pretty barbaric about the treatment of anal fistula, you can't just cut it out because then I'll be incontinent, you can't use shortcuts like filling it with some wood glue and calling it a day, it's a long, painful and tedious treatment that requires open healing. WHY ARE WE IN 2017 AND HEALING WOUNDS FROM THE INSIDE OUT IS STILL THE BEST THING TO DO!!!?? 

After my surgery, I was petrified that I would have a drain but it turns out that the most horrifying thing about my third surgery was that Friends was on when I woke up from my twilight sleep and I was mad as hell that the first thing I saw was not Shrek, but Ross complaining about something. My CRS told me that I could resume "normal activity" within 2 days (impossible) and that the next surgery should be the definitive treatment, LIFT surgery (spoiler, it's not). 

As I mentioned in the previous post, at this point, I am a pro at dealing with wound care. I spend a good week hobbling and laying around, avoiding chairs and wearing sweatpants. After a two week period, I'll usually go back into the office and bring around a hemorrhoid donut - at this point, I carry that thing like it's a purse. For the first three weeks after my third surgery, I was feeling alright, I figured this would be the end and I could finally get my last surgery before the end of the year. But then everything got fucked up. 

My 6 week post-op appointment with my CRS was in the beginning of November and I knew something was wrong. For a few weeks, my fistula was draining like crazy - I would put weight on my lower back and liquid would squirt out (yes, this is as gross as it sounds). There was noticeable swelling and tenderness. I was hoping that it was just healing, but I knew something was wrong. My surgeon looked at the area and said that she was concerned about the swelling going up my left butt cheek and said that she would have to do an "aggressive" treatment. This means another open wound, but this time it would be so large and deep that it would require packing. 

Up until this point, I've kept my shit together during the appointments with my CRS but I felt so crushed that I cried all the way home on the train, on my walk from the train and then sobbed/yelled for forty minutes at home. Not only did I need a pretty invasive fourth treatment surgery, but I needed to have money saved up to pay for another max out-of-pocket medical bill in 2018 for my other surgeries. Once again, money comes to mind first, but the real shit is thinking about how much longer I'm being held hostage by my ass. This has affected everything in my life - being active, going out, sociability, sex, my body, my physical and emotional well-being. Everything. I know that I'm fortunate to have a supportive and understanding partner (which after my fourth surgery, will also become my nurse... but that's next post!) and the means to be able to treat this; I'm not dying from this but it feels like it's killing me. 

To make matters worse, my "little friend" the perianal abscess decided to make a raging come back approximately 5 days before my scheduled surgery. I thought I could wait it out until my next surgery, but the pain got so bad that I could barely walk. My CRS urged me to go to the ER and as I sat in the disgusting emergency room, the abscess decided to drain by itself and squirt infected pus all over my Adidas track pants. For the next 30 hours, I had at least 10 doctors and 4 nurses come look at my butt. I never knew that I would get this much attention from medical staff for having a complex anal fistula but I guess I am a total freak show. 

I have never stayed overnight at the hospital before and it sucked. I was hooked up to an IV and given 4 rounds of antibiotics. I was treated like I was sick, but I wasn't sick, my ass is just fucked up. I waited around all day to see if I could get my surgery moved up, I was hungry and thirsty and had a raging caffeine headache and just wanted to go home. Because my surgeon was not able to find a time to do my surgery that day, the only beneficial thing that happened during my hospital stay was that I got into the Bravo show "Below Deck" and my abscess drained by itself and was no longer causing me pain. 

I was discharged at 4pm and my surgery stayed scheduled for the same time, Tuesday, November 21st, 2017. Let me tell you, that surgery was a DOOZY. 

Anal Fistula Treatment #2 - Seton Time

After having the disgusting drain removed and going through a slightly traumatic anal sonogram; I had the joy of experiencing 12 beautiful, peaceful hours of drain-free/seton-free bliss. The bliss was short-lived, as I was scheduled to have my second surgery the next day. 

My second surgery was a lot easier to deal with than the first one. First, I woke up from surgery DRAIN FREE! The hole from the fistulotomy and seton was a lot smaller than the first time around and at that point, I felt like a pro at dealing with wound care. When it comes to learning how to deal with having open wounds in your ass, you have to learn how to take care of the area pretty quickly. I've started to place a reoccurring gauze order with a medical supplier on Amazon, I'm only using flushable wipes and I've installed a hose on my toilet that allows me to spray the area, like a bidet. 

For a while, everything is as good as it can get with an anal fistula. July goes by and I'm trying to live my life as normal as possible but I am always uncomfortable/itchy/draining from the seton. My 6 week post-op appointment goes by and I'm scheduled to see my CRS at the beginning of September. During this time, I feel so anxious to know when my next surgery is going to be. I just want this nightmare behind me so I can resume my life. 

The appointment with my surgeon is finally here and she is concerned that I am still feeling pain around the seton area and orders another MRI. This is not the news I was anticipating and I'm starting to realize that my 6-12 month treatment prediction may lean more towards 12 months. 

Having already met my maximum out-of-pocket for 2017, I did not hesitate to get a second MRI. However, I discovered that, as I was being wheeled in head-first into the MRI machine, I have claustrophobia! The tech was nice and allowed me to go in feet-first instead but I couldn't shake the uneasy feeling that the claustrophobia caused (or triggered) for the next two weeks until I got my results. 

My results were posted online before my doctor called me, so I got to stew on this phrase for a whole weekend:

There is an additional new fluid tract extending left and posteriorly from the seton into the left gluteal subcutaneous soft tissues where there is a small 15 x 8 mm collection of fluid and air (17/28, 19/14).

You know when you fall down hard and it feels like the wind was knocked out of you? Or that super-zoom function on Instagram? That was me with these results, I kept on reading it over repeating "new fluid tract....collection of fluid and air.... collection... of...fluid...and...air.... COLLECTION OF FLUID AND AIR!!!!" I was mad as hell, at this point, I still hadn't talked to my doctor and it was a weekend. There's a moment in terrible Sex and the City movie where [SPOILER] Big leaves Carrie at the altar and she goes on their honeymoon with her girlfriends. She sits on this bed and stares out and says that she feels nothing and all she wants to do is sleep. This was my reaction and I didn't even have someone like Charlotte to shit their pants to make me laugh again. 

Finally, after four long days or being tormented by a collection of fluid and air, my doctor called me and said she wanted to do another surgery that Friday. Not definitive surgery that will end this nightmare, but another treatment to deal with this asshole fistula that just won't go away. Here we go again, getting ready for surgery #3 of the nightmare that will never end. 

Anal Fistula Treatment #1 - Revenge Of The Drain

I had my first fistula treatment on May 23, 2017. I had no idea what I was getting into, I thought I was going to get a seton or a fistulotomy. I had recently seen Alien Covenant and I remember telling the anesthesiologist that I was hoping that I would wake up to David and not Walter. I had "twilight" anesthesia, I wish it was the kind of anesthesia that would cause "Twilight" fantasies and I'd be riding on Edward's shoulders jumping on evergreens but I just blacked out and woke up in mesh underwear complaining that my butt hurt. My CRS stopped by and she told me that they couldn't find the internal opening to the fistula, which makes everything I went through for the next four weeks totally pointless. 

I went home totally in the dark as to what happened to me. It's been my experience that doctors (or at least my CRS) downplays everything. Yeah, I guess this is not a life and death surgery, but nothing could have prepared me for the aftercare. It was a complete shock that when I first used the bathroom post surgery, a 10 inch drain uncoiled from in between my butt cheeks like a snake. This drain was placed in the fistula, which was apparently so deep that my CRS was not able to place a seton. I thought that the CRS had forgotten to remove a drain from the surgery, but this monstrosity was sutured to my skin. Next to the drain was an open wound that was as big as a gum ball - a wound meant to help heal the perianal abscess. 

Something that surgeons tell you is that you should be able to resume "normal" activity within two days. HOW? I could barely move for the first two weeks with that drain, let alone sit or just be a functioning member of society. 

The drain was the bane of my existence. The smell permeated everything it touched - a toxic mixture of dirty latex, body and infected drainage that soiled everything it touched. Every week, I had to go to the hospital for a drain check - which means, that I would lay on my stomach, they would squirt contrast into the drain and take x-rays to see if the fistula had collapsed. I thought I was miserable with the drain and open wound but nothing could have prepared me for the contact dermatitis that I got from the fucking drain. I was so itchy I wanted to rip the skin off of my butt. 

After four weeks, my CRS removed the drain and performed an anal sonogram to try to find the internal opening to the fistula. After two very painful sonograms, my CRS was able to locate the internal opening and scheduled a surgery for the next day. 

Anal Fistulas, Abscesses and Despair: The History of The Eye of Sauron

For the past 7 months, I've been dealing with a complex horseshoe fistula. I've had four surgeries (AND COUNTING!) and have spent thousands of dollars on medical bills, medications, gauze and flush-able wipes; yet, but no monetary amount can describe the emotional toll this has taken on me. Over the years, I've started to call my anus the Eye of Sauron (as I will continue to call it in this blog) because it's like a flaming eyeball reining over evil causing trauma and despair. If you're one of the few 200,000 yearly cases unlucky enough to be diagnosed with an anal fistula and stumbled on this blog through a Google search, I hope that my posts will help to make you feel not so alone.

I decided to start this blog because I feel like the online resources regarding anal fistulas are few and far in between. Doctors will give you blanket statements from medical textbooks but they haven't lived through it, medical reports are a fucking bore and message boards, while helpful, don't always outline personal experiences. 

So for my first post, I decided to provide a history of the events that lead up to my first surgery in May 2017. 

November 2008

I had a closed pilonidal cyst surgery. That's right, I've had literally every possible butt cysts you can have! While this may be unrelated to my fistula, it also may be... who knows! Those sinus tracts are tricky little fuckers. 

February 2016

I call this moment my very own Dol Guldur, the moment when The Eye of Sauron took shape. I'll never forget the Superbowl 2016 because I felt like an anal fissure was going to kill me. I've suffered from hemorrhoids and small fissures before, but I've never had a fissure that felt like it was tearing me open with a searing knife. This pesky fissure became chronic and bugged me for over a year. During this time, no amount of steroid foam, pain killers (not recommended!) could heal my anus - the only thing that provided some relief is a high-fiber diet, stool softeners, sitz baths and fiber pills. While I don't know if the fissure caused the fistula, I think it's a possibility. 

March 2017

After over a year of dealing with a chronic anal fissure, I started to feel better. I took a trip to Thailand and on the last few days I started to feel some discomfort and tenderness around my lower butt cheek/taint area. After a long plane ride home, the discomfort turned into major pain - I could feel a hard lump. I was scared that it was a botfly that I got in Thailand (not possible)... ugh... I wish it was a botfly.

On my first day back from vacation, I visited an urgent care clinic. The doctor said it was a "dermal cyst" and prescribed an antibiotic. Although the antibiotics helped with the swelling, I could still feel the lump, so I decided to go see a dermatologist. The dermatologist felt the lump and said it was "too deep" and recommended me to a Colo-Rectal Surgeon (CRS).

My first visit with the CRS was with a physician's assistant. She felt the cyst and did a rectal exam (THIS IS VERY UNPLEASANT) and ordered an MRI to check for a fistula. At this point, I didn't have much detail as to what is happening, but I had Googled enough to know that I had a perianal abscess. I've been a relatively healthy person, so getting an MRI was a first for me. I was already shocked by the specialist copay but getting an MRI bill shook me to the core. I knew that in order to get a better understanding of what was happening to me, this needed to happen, but god damn this shit is expensive. A brief side note, that despite having to pay over $1000 for an MRI (with insurance) they only had FREE Pandora with ads available to listen to in the machine. 

April 2017

The CRS physician's assistant called me with the results from my MRI and stating that I had a perianal abscess and fistula and referred me to my CRS. At this point, I felt like I kept on taking steps back every time I heard news of my condition. I didn't think it could keep getting worse... I WAS WRONG. 

Upon my first visit with my CRS, I learned that not only do I have a perianal abscess and fistula, but it's a complex horseshoe shaped fistula. The CRS told me that this is the most difficult case to treat (yay!) that it could take 6-12 months to be healed (I'm beyond the six month period with no end in sight) and that the success rate is 60-80%. Essentially, the horseshoe shaped fistula is a little tract that likely stemmed from the fissure in my rectum, latched itself internally to the outside of my rectum like a horsehoe, up my butt crack and also down to create an abscess. 

I think it looked like this:

My surgeon scheduled a surgery for the end of May and I'm hopeful that I will only need one or maybe two surgeries and this shit will be over with by Fall. I'm also bitter as hell and experiencing "WHY ME" moments and so disappointed that I won't be able to swim all summer. On my next post, I'll talk about my first surgery.