16 Months Later

I'm going to write down my story so far with Pilonidal Disease

I know this seems like TMI, but you have to understand: I don't have privacy anymore. It feels like everybody and their mother has seen my backside. There are no secrets and nothing is taboo at this point in my life. My goal is that at least ONE person reaches out to get help after seeing my posts. If I've done that, then I don't care what my reputation is - this disease can make anyone feel alone. You're not. 

In June 2016, I noticed something was very wrong with my tailbone area. Every time I sat to use the toilet, blood went everywhere. I figured it was an anal fissure - but something was different this time. It happened every time I sat.

After 2 months of pain and frustration, I went to my local PatientFirst to see if they knew what would cause a prolonged anal fissure. The doctor looked at me and said, "That's... that's just a bad fissure. You should see a colo-rectal surgeon."

The colo-rectal surgeon barely looked at me before he said, "That's no anal fissure. You have a pilonidal cyst...and it needs surgery NEXT WEEK."

Pilonidal disease occurs in people who have a dimple/deep cleft in their butt crack. It becomes porous and fills itself. It's defined as an "abnormal skin growth located at the tailbone that contains hair and skin" - but the truth is that no one quite understands what causes it and it has nothing to do with hygiene. 

He proceeded to explain to me the concept of an open wound procedure. It sounded barbaric. Basically, he would cut the cyst out in an outpatient procedure and leave me to heal with an open wound about the size of 2 inches deep and 2 inches wide. After the procedure, a loved one (hi mom) would pack the open wound with gauze. The gauze were to be changed twice a day.

I was so optimistic and excited to have an answer. To heal. Upset that I would have to drop out of school for another semester, but excited nonetheless. The procedure happened in August. It happened the same day as classes were starting at CNU. If life had gone according to plan, that would've been the first day to my senior year. I was emotionally a little torn, but... anything to heal at this point.

The procedure itself went fine. I woke up and it felt like the staff immediately barked at me to get dressed and out of the office. But let me tell you: I was in SO much pain.There's no way to imagine how terrible an open wound feels until it happens to you.  I was on bed rest for about 3 weeks and took percocet for approximately 14 days. The worst part of my day was the dressing changes. The gauze would go into the wound slightly damp with tap water - and by the time it was ready to come out (12 hours or less) it was already stuck to the sides of my wound. Every time the gauze was changed, it would rip off almost like a fresh scab and blood would drain in the shower. 

After 3 weeks of not healing, I asked my surgeon what was wrong. He said, "Nothing. You're just taking a little longer than usual. Everything is fine. I will paint your wound with silver nitrate. The silver nitrate will burn off the granulation tissue. It might sting a little, but it will promote faster healing."

I'm ready. What's more pain, at this point, if it means I get to heal? Have at it.

He put the silver nitrate on and the room turned pitch black as I gasped for air. The pain was severe and unexpected. I could hardly breathe. He rammed gauze back into my wound and said, "I'll let you catch your breath. Meet me in my office," as he tossed the latex gloves into the trash.

I never went into his office without my mom. I trusted him at this point, but his office visits overwhelmed me so much that I never quite gathered everything he said to me. I needed my mom to catch what he was trying to explain, because my natural reaction is to emotionally shut down.


Weeks turned into months. By FEBRUARY I had enough of what felt like lies. I finally went back to school for the spring semester, but he expected me to come home at least once a month for my silver nitrate treatments. My surgeon kept swearing that the wound would start to heal rapidly. It never did.


I started seeking other options. I had been lurking on pilonidal.net since my diagnosis but I finally caved and made an account. I wanted answers. Everyone on the forum recommended the "cleft lift" procedure. Most open wounds don't heal because they don't remove the pits/tunnels that the cyst formed - so these tunnels were actually feeding the open wound. I could've packed it for the rest of my life and it wouldn't have healed or shrunk in size. 

The cleft lift procedure actually changes the shape of the cleft (aka: butt crack). It cuts the bad part out and pulls over skin from the other side to flatten the cleft. 

Source: https://www.rush.edu/sites/default/files/Cleft-Lift-2013.pdf

Look at this beautiful diagram. Wow. 

I was furious. How could my surgeon let me down? I trusted him for months. He lied to me. HOW COULD HE DO THIS?

I immediately sought the closest surgeon who could perform the cleft lift. He was a surgeon in Pennsylvania (I'm from Virginia, so it meant a bit of a trip) but at least it meant I could finally heal. Especially because my wedding was in July and I was desperate to finally heal. I didn't want to have a bloody, open wound in my gown!

We scheduled my cleft lift for the end of April. As soon as spring finals ended, my parents and I drove to Pennsylvania. We stayed in a hotel overnight and drove home the next day. My surgeon told me to text him pictures of the incision site every few days - he recommended this above stay in in Pennsylvania. 

After the procedure, it seemed like I was finally on the track. I just needed to wait a few days, take the steri strips off, and then clean the wound. Easy, right? 

No.

I developed an infection about 5 days post-op. I knew something was wrong because I kept getting hotter. Something didn't feel right and my body was on fire. The pain around my stitches kept getting worse. The pressure was unbearable. I couldn't sit, lay down, or do anything.

It was about 11pm when my mom took me to the ER. Despite Motrin, my fever wouldn't go down. I was miserable in pain and terrified. That was the closest I've ever felt to death. 

When I finally made it into a hospital room, the ER staff were afraid to look at my wound. They barely peeked at it before coming to the conclusion that I was suffering from an infection. Frantic, they tried calling my surgeon because they weren't familiar with my procedure. He answered (bless that man, he answered our calls at 2am some nights) and told them to give me antibiotics through an IV. I think they also gave me morphine.

They finally got my temperature stabilized and sent me home. Within the next few days, the infection started oozing through my stitches. A hematoma had developed beside my stitches. The stitches started ripping open. For the next week (what felt like a century) I laid on my stomach while drainage poured out of my stitches.

I was defeated. I was depressed. I had tried everything to fix myself and nothing was working - in fact, my wound and pain was WORSE than before I had the cleft lift. I contemplated suicide every day because I couldn't see myself coming back from this mess and I was terrified I would show up to my wedding in depends.

As soon a possible, we drove back to PA so that my surgeon could take a look at the damage. My spirits were further hurt when he took out some stitches, squeezed the drainage out, and proceeded to put in more stitches WITHOUT NOVOCAINE. I felt the needle and thread with every pierce in the most tender area of my body. 

I got in the car to go home and immediately started crying. Life felt impossibly unfair. I dropped out of school in February 2016 due to depression and anxiety. I spent months trying to find a reason to live. I had to fight for a life I didn't want to live only to immediately be followed by this disease.

It felt like I had wronged God. I seriously couldn't understand why this kept happening to me. I wanted to keep it in perspective and say, 'others have it worse' - but I just didn't care. I didn't care about people who had it worse. I couldn't see myself living a life where I wasn't debilitated by this wound.

The surgeon left me with a new open wound once the infection cleared out. He said it should heal on its own in 3 months but if it doesn't then I would need another cleft lift attempt. He said that in June  of 2017.

I attended my wedding with the wound. Thankfully, God was on my side that day and the adrenaline and love I felt overpowered any pain I could've had. Was it ideal to wear feminine pads and worry about leaking? No...but it wasn't depends. :)

Ultimately it didn't matter. I got married to my love on a humid, rainy day in Virginia with a wound in my ass. The florist made me the wrong bouquet among other things that went "wrong". Didn't bother me one bit.  Don't ask me how he's stayed by my side through all of this - because it's been a whirlwind.

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It's now December and I'm still stuck with this "newer" wound. It's definitely worse than the first wound because it extends all the way to my anus. By the end of the school week my butt is so sore that I spend the majority of the weekend on my back or side to let it rest.


My next cleft lift (with my 3rd surgeon) is scheduled for December 19th. I've heard great things about this surgeon so I'm excited, but I'm also nervous at the possibility of another failure.

Until then, I've got two more finals. I'll post surgery #3 updates.

** IF YOU OR A LOVED ONE IS SUFFERING FROM THIS TERRIBLE DISEASE, HERE ARE SOME GREAT RESOURCES. ALSO, FEEL FREE TO MESSAGE ME. ** 

- https://www.pilonidal.org/

- https://www.pilonidal.org/xfforums/index.php

- https://www.facebook.com/groups/12728745078/about/

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Now for the fun part. Here's some things that I've found to be funny this semester:

1. When I have to explain to my professor why I can't sit during class (sometimes I'll stand in the back because I literally can't sit) - and they say, "Oh. I once knew someone who had sciatica. I understand" Yes. Sciatica. Totally. 

2. The numerous amount of butt jokes and butt puns. Seriously, they never get old. If I have to suffer with a chronic open wound, at least let me make tasteless jokes!! 

3. Making up holidays. For example: "Happy March 14! Pi-lonidal Cyst Day!" (Like I said, tasteless jokes are what keep me going at this point.)

4. Whenever I've ended up in the ER due to something weird (seriously, sometimes pooping puts me in the ER because fecal matter gets into the wound and I can't clean it or I'm in so much pain that I won't let Aaron touch it) and the nurses/doctors don't know what they're looking. Most of the time they just give me the strongest pain meds they can find and squirt saline solution in me. 

5. The look on faces when I explain that I currently have an open wound in my ass right now. It reminds me of my first reaction when I found out that my surgeon would leave the incision open ON PURPOSE. It seems so barbaric for 2017.  

6. When someone thinks I've made my situation up. There's SO many things I could lie about - I would choose something way cooler than a butt wound if I had the chance. Nice try. 

There's more, but those are the highlights. Back to finals studying. 

Happy Holidays, y'all. :) 

Not my picture - please let me know if you are the one who created this and I will give you credit!

Rate Your Pain...

As I sit here in the ER waiting room (for what feels like the 1000th time), a few things have come to my mind.

I always wondered how warriors in the movies were able to keep fighting even after a stab to the chest or stomach. "They're bleeding! How can they go on!?"

But, here I am with a chronic open wound below my tailbone. Just a bloody hole and yet I still keep going on.

How?

I hate being asked my pain level. Pain is subjective. I'm now used to my wound. I SHOULD be saying a 7...but I'm numb to it now. Pain is all I can remember. I feel like I'm not taken seriously when that pain is increased but I would be lying if I said it was the worst pain I've ever felt. I can't put a number on a subjective concept. My 10 might be a 4 for someone else.

It's can be frustrating how may people lack sympathy when I tell them that it's hard to sit because I have an open wound beneath my tailbone. Heaven forbid Johnny breaks his arm, though.  That's REAL pain. How do I live my life and not envy the Johnny's of the world? Why isn't my illness/injury valid enough?

It's incredible what you can overcome.

Before 2006 I would tell you that the worst pain you can feel is losing a loved one

2009 I would tell you the worst pain I've ever experienced was mono. How could I ever handle more?

2011 I would tell you the worst pain I've ever experienced was neck surgery with a drain.

2016 I would tell you that the worst experience I've ever been through was having a bad reaction to antidepressants and going WAY off the rails - paranoid, shaking, hiding, screaming, jittery, restless, lost feeling in legs. Numb to life itself. Disassociation.

Toward the end of 2016 I would then argue that the worst pain I've ever been through was surgery with an open excision...followed by 9 months of a wound that wouldn't heal. Packed every day.

2017 I would argue that the worst pain I've ever been through was when my 2nd surgery became infected and formed a hematoma that eventually split and oozed infection for more than a week. Followed by getting stitches put in without any numbing agent - I felt the needle and thread with every pierce.

I would still say that's the worst pain I've been through. Every time I always asked God, "how could I ever take more?"

But I do. Something comes along that tests my strength and you roll with it.

You never know how strong you are until you're tested.

Going back to point 4, Johnny's broken arm might be the most painful thing he's ever experienced. So while it seems ridiculous to me at first, I think back to how I felt in 2005 or 2009 or 2011.  That's okay. Let Johnny be in pain. Sympathize.

Meanwhile, I'll continue to take my pain as it comes and always try to remember empathy for those going through worse: cancer, MS, dementia, organ failure...

But also for the broken arms of the world.

We keep going on because it's all we can do and it's all we know how to do.

Your pain is valid.

Jess, why are you doing this?

Due to popular request, I have decided to start a blog about my journey. This way I can keep everyone updated on my life without cramming so many details into a Facebook message.

I am a transparent person. I don't see the benefit in keeping secrets about who I really am because I have nothing to hide.  I'm not some kind of perfect person that you would typically see portrayed on Facebook. I'm human. I have made mistakes, and I am right there with you.

Facebook/Instagram/Twitter/Snapchat/etc. don't portray accurate pictures of who we are and what we feel. Many people think I throw pity parties for myself or that I brag too much - I don't care. I'd rather read someone truly sharing their story instead of just their positives in life or useless political banter. "Look at me! Look at how many friends I have! Look at the pun I associated into my picture caption!" - You've definitely checked your status to see how many likes you've accumulated since you posted it. We all have!


I'm not going to lie and say that Facebook is the bane of my existence and we should all delete our accounts. It has opened countless doors filled with networking opportunities and ways for us to connect on new levels.

It amazes me that I can post this picture with the caption "Same," and the internet will typically have some sort of reaction to it and they can relate. Likewise, you can post a picture of a sign that's been knocked over from the wind and people will still nod and say, "Same" and we instantly know how they're feeling.

If we are understanding each other on deeper levels without verbal communication, why can't we  verbally communicate about what's truly wrong?

I used to be very private about my struggle with mental illness until it became dangerous and I almost lost my life. For the longest time, I didn't know how to tell my parents what I was experiencing. I will advocate at the top of my lungs if it means that my story can help someone else to relate and seek help before it's too late.