Finally Fistula Free

Hellooooo fistula warriors!

I have not been very active on here lately as I am going through a new health ordeal (adenomyosis and endometriosis! ugh!), and am navigating my way through all of that. I hope to soon be putting up some new stuff here, and have lots of ideas, so please stay with me!

I am excited to be able to share a new fistula project with you. Fellow fistula warrior Jen and I have been working on a project called Finally Fistula FreeOur goal is to provide a space where people going through the fistula nightmare can come to find success stories. We are currently collecting stories from people who have healed from their fistula, and want to share their journey with others. If you (or someone you know) has healed from a fistula and would like to share your story, please send us your success story at finallyfistulafree@gmail.com, we would love to hear from you and share your experience.

Part of breaking through the stigma of this health problem is being able to talk out loud about it. Speaking from my own experience, writing about my journey in detail has been empowering, and has enabled me to help others. I encourage you to step outside of your comfort zone, even if that means just reaching out and joining a support group (I run a great one on Facebook: Fistula Support Group, and Jen runs a wonderful group for women: Abscess/Fistula Support for Women), or openly speak about what you’re going through with family or a close friend.

You can check out my full success story on our new blog here: Through the Tunnel of Doom and Back Again, and on the home page you will find Jen’s amazing journey, as well as our first contributor, Mary’s story. We hope you enjoy it, and that it brings some hope!

Be Back Soon!

In Solidarity,

Leah R. Chatterjee

What in the Bloody Hell…

 

bloodfsg

There’s no getting around how painful and disgusting living with a fistula can be. I am fairly certain that my period was the most dreaded part of those three years of fistula doom. For those of you who have never experienced living with a fistula, let me paint you a picture:

One day, after a painful ordeal with an abscess, you learn from your doctor that you have developed what is called a “fistula.” A lame explanation accompanied by crude drawings ensues, and you learn that there is currently a tunnel connecting your rectum to an area right near your vagina. You are now constantly leaking fecal matter. Your life becomes a constant battle to keep your nether regions clean, to manage pain and discomfort, to maintain a shred of dignity and some semblance of sanity. To make things extra fun, your doctor places a giant rubber band in your ass, which hangs down and wreaks havoc on your butt cheeks and surrounding tissue. As if all of this wasn’t horrific enough, you are a woman. Once a month your uterus sheds, and suddenly an already unpleasant aspect of womanhood becomes HELL. Now, not only are you leaking fecal matter, dealing with chronic pain, and have a giant rubber band sticking out of your ass, but you are bleeding all over the place. You become intimately familiar with all of the adult diaper options. You try to come to terms with a new normal.

So, how does one cope with having a period while living with a fistula? My first piece of advice? Ditch your tampons. If your doctor hasn’t already told you this, I’m telling you now. Inserting a tampon while you are leaking fecal matter is a great way to ensure that bacteria and fecal matter will enter your vagina, which will open you up to all sorts of infections you do not need to add to your plate. If your fistula is rectovaginal, that whole area is going to be super tender and extra sensitive anyway, so you definitely don’t need a big, abrasive chunk of cotton up in there.

If you are a diva cup user (or whatever “cup” brand you prefer), the same applies. Ditch it for now for the same reasons.

Here are your options, and what worked for me:

-overnight pads with wings

-overnight pads with wings on an adult diaper for super heavy days

-for those who wish to be eco-friendly I highly recommend GladRags. They are washable, reusable pads, and are actually really good for lining your underwear for bad leakage days even when you’re not on your period. There are also a few shops on Etsy that will custom design reusable pads for you.

-frequent washing. Invest in a squeeze bottle with a spray nozzle. Clean your vagina and bottom regularly throughout the day.

-Sitz Bath every chance you get. Scroll further down for my entry on Sitz Bath and hygiene.

-ask your gynecologist about the possibility of skipping your periods altogether with birth control. This may not work for those of you who are sensitive to medication or hormones, but it is a viable option for some.

-Meditate. Seriously. Do this all month long. It really helps.

Fistulas are life-disrupting, painful, fairly gross, and can often turn in to long-term struggles and multiple surgeries. I received an e-mail from a woman who is dealing with a colorectal fistula, and she wanted to know more about how to deal with her period during all of this. I thought about it, and nobody ever gave me ANY advice about how to handle a menstrual cycle while battling a fistula of doom. Women with fistulas are constantly dealing with what I call the “Silence Factor.” Nobody wants to talk about periods, about tampons, about menstrual blood, and nobody wants to talk about anything relating to the rectum. Our reality, though, is that we have to navigate through life with these added complications that most people don’t understand, and are uncomfortable hearing about.

I’m here to deliver this very important message: You have nothing to be ashamed of. You are not gross. This shit is really hard, painful, isolating, and really depressing, and you are a warrior who is surviving it.

YOU HAVE NOTHING TO BE ASHAMED OF.

If you are a woman, or a person who has periods, and you need to reach out to someone who has been there, please shoot me an e-mail at fistulasurvival@gmail.com. Sometimes it can take me a while to respond, but I will respond.

In solidarity,

Leah Chatterjee

Advancement Flap Surgery

One of the most common surgeries available to close a fistula is called the advancement flap surgery. If you have a colorectal fistula, there is a good chance you will hear about this option somewhere down the line. I’ve sketched my own depiction of the surgery here:

  

What you are looking at is the fistula from the inside of the rectum. Simply put, the surgeon will cut a piece (or flap) of tissue near the fistula hole, and stretch it over the hole like a patch. Sutures are used to keep it in place.

Here are several questions you might want to ask your doctor before you decide to have the surgery:

1) What is the state of my tissue in that area? Is it in good shape for surgery? As we get older our tissue can weaken. If you have had multiple surgeries in that area, the tissue might not be in the best shape. Your doctor should know whether or not the tissue is good enough for a strong flap, but asking is always a good idea.

2) Am I clear of all infections? Any kind of infection can compromise healing. If you feel something might be “off,” have frequent diarrhea, or stomach cramps, ask your doctor to run some tests and stool samples. You know best what your body feels like when it’s healthy, so don’t be afraid to insist on lab work before going in for surgery. 

3) What can I do after surgery to help the healing process? Ask your doctor about how to properly take your antibiotics and pain medications. Ask about what foods to eat, and what foods to avoid. It is very important to eat well after this surgery, and to be conscious of eating foods that will pass through the rectum easily. 

4) How can I best manage my pain and physical discomfort after surgery? Every person is different, has different levels of pain, and different reactions to pain. This surgery can take time to recover fully from, and there will be at least a few days of serious discomfort and/or pain. It is important to prepare for this beforehand.

5) How should I keep the area clean? After surgery the area will be tender, there will be some bleeding, and keeping the area as clean as you can is important. (In this seton band article I give tips on keeping things clean)

According to most literature currently available, the advancement flap surgery has a success rate of about 70%. Many studies reported causes of failure were often due to the presence of Crohn’s Disease. I would advise that you not get too caught up in numbers. Do your research, talk to your doctor about concerns (don’t be embarrassed, colorectal surgeons have heard it ALL), and get a second opinion if necessary. 

Best of luck to all of you on the fistula journey. As always, feel free to contact me with questions or comments. I will do my best to get back to you in a timely manner. Please remember that I am NOT a doctor, just someone who has lived through a 3 year fistula, and has accrued what I hope to be valuable knowledge and experience on the subject. 

Leah R. Chatterjee

Quit the Butts for Your Butt!

I have been thinking about how to write this for a while now. How does one write an entry about quitting smoking without the BS shaming, the guilt-tripping, the clichés and facts that everybody already knows?

Before the Fistula of Doom descended on my life like a gloomy fog of despair, I was a very heavy smoker. I’m talking 1 to 1.5 packs a day heavy smoker. In fact, one of my greatest fears was that I would never be able to quit. I had tried unsuccessfully countless times to stop the nasty habit. Unfortunately, I loved smoking. I loved every part of smoking (okay, not the smell), and over the years I had come to rely on it as a coping mechanism for pretty much everything. When I first got the fistula I started smoking even more to deal with the pain and distract myself from the poo leaking out of the tunnel. My doctor encouraged me to quit, citing all of the obvious reasons that smoking was impairing my healing process.

IMG_8857

 

I already knew, as most smokers do, the risks involved in smoking. Even after reading about how bad smoking is for your intestinal system, how it slows almost all healing processes, how it is especially bad for people with Irritable Bowel Disease, I still did not quit. I thought about it a lot, but it just didn’t feel urgent.

Fast forward to a year later, and something changed. I got scared. Really scared. I had a rubber band (seton band) hanging out of my ass, was still leaking poo, still rocking the Depends and copious amounts of gauze. The awful red donut was still my major accessory.

IMG_8859

I was terrified that I would never heal. To top it all off I got a c diff infection (please see my earlier blog on C. difficile), and was not having success in getting rid of the persistent disease. I finally told my therapist, “I will do anything to get better. That includes quitting smoking. Please, help me stop.” I really meant it, but was nervous, skeptical of my own will power. With the help of my therapist, I worked out a plan to taper off of them…VERY SLOWLY. I cut back by one cigarette a day until I was down to 3 a day, then cut back one a week, until I was finally down to just chewing gum (I eventually quit that, too, after a year of gum chewing). It was one of the hardest things I have ever done in my life. It was a painful, messy, grumpy, tearful affair, but I did it. All because of my deep desire to get better.

I’m sharing this, not to give myself accolades for my achievement, but to let you know from one smoker to possibly another that it is possible. I am not joking when I say that there was a point in my life where I did not think I was capable of quitting. I thought surely it would be what killed me. The truth is that smoking wreaks havoc on your entire system, not least of which is your circulatory system and your digestive system. If your fistula experience is anything like mine was (don’t worry, plenty of fistulas are not as wretched as mine was), you are looking at possibly several years of multiple surgeries. You want to be as kind to your intestines and colon as you possibly can (trust me when I say that you will suddenly be more concerned about what you put in in relation to how painful it is coming out). I absolutely have to say this obnoxious line:

You really ought to quit.

Making the decision is easy enough. I recommend seeking out some kind of support if you know you are going to have a hard time. Checking in with my therapist weekly was a huge help, and the one thing I did different when I finally managed to quit. I had someone to hold me accountable, and even on weeks that I messed up it was good to have someone reminding me that it’s okay to screw up. If therapy is not an option for you, there are a lot of online and in person support groups that are free. I highly recommend the tapering off method, especially if you are a heavy smoker like I was.

As usual, I recommend looking into natural remedies to ease the anxiety of quitting, such as flower essences (Bach Flower Remedies are good and fairly affordable, and their website has pretty great explanations of what each essence is good for), meditation, exercise, breathing exercises, etc. I definitely used Nicorette for the first 8 months, but when I quit the gum it was the natural stuff that kept me from going backwards.

Three years later I can tell you that the rumors are true: you do feel a hell of a lot better after you quit. Every body is different, but mine felt a significant difference after 6 months. One year later I could really breathe. You know, big, deep, full breaths that you forget you’re capable of. Truth? I still get cravings sometimes. It’s so much easier to write them off now, though, and I don’t miss being a smoker one bit. Good luck!

Leah R. Chatterjee

Let’s Talk About Sitz

Fistula Survival Guide

One of your main tasks during this whole ordeal is going to be managing your pain and discomfort. That is why I’ve dedicated an entire entry to the Sitz Bath:

Image

This is a Sitz Bath, your new best friend through almost every stage of dealing with the dreaded perianal/anal fistula. This wonderfully simple device will do more to ease your pain and discomfort than anything else out there (my opinion, and probably your doctors’ opinions, and that of anyone else who has had an anal fistula). It is very easy to use, you just fill it up with the hottest water your bottom can stand, place it over your toilet seat (lift the two lids first), and sit. You can also add stuff to the water, like witch hazel, but honestly just plain water works great. You can use the Sitz bath as often as you want. Shoot, you could…

View original post 222 more words

The Diagnosis

Let’s start at the beginning of my journey: The dreaded diagnosis.

The whole adventure began when I began to feel an ache in the area very close to my vagina. At first it felt like a bad bruise, but within 48 hours I was in so much pain that I made an emergency appointment with my gynecologist (I seriously thought it was a vaginal issue). She realized immediately that it was an abscess, and sent me to the ER at Sibley Hospital in DC. After possibly the most pleasant ER intake I have ever experienced, a colorectal surgeon showed up and drained my abscess. This was no major thing, they applied local anesthesia and cut it open right there. It was a fairly painful recovery of about two weeks, but afterwards I felt fine. 

I went back to the same surgeon about a month later for a check up, and was informed that my abscess had resulted in a fistula. I have to tell you, it was very confusing. My doctor did not explain it very well to me, gave me no indication of what was possibly in store for me, and led me to believe I would need one operation, and that would be the end of it.

Here is where I want to scream at you:

GET A SECOND, THIRD AND FOURTH OPINION! 

Please! Please! I beg of you, do your research, read patient reviews, find a doctor who communicates well with you. Ask a million questions. If you feel confused at the end of your appointment, your doctor has not explained things well enough to you. If you find yourself doing all of the research yourself, looking up explanations, reading other people’s horror stories, YOUR DOCTOR IS NOT EXPLAINING THINGS WELL ENOUGH TO YOU. This entry is about diagnosis only, so I won’t get into how badly this doctor screwed with me, but basically I wasted almost a year of my life with the wrong doctor. Don’t do that. If you are frustrated, there is nothing wrong with shopping around for a better fit. I wish I had done this early on, I wish someone had told me to find another doctor. 

The first thing to do when you get a diagnosis of an anal fistula is to force your doctor to take time with you to explain it. Make them show you pamphlets, books with illustrations (trust me, every colorectal doctor’s office has them), make them draw it for you themselves. Do not leave that building without asking all of your questions, and don’t be embarrassed to ask questions like, “What do I do about poo leaking into my vagina?” They will not bat an eyelash at questions like that. 

The second thing to do is go home, take some deep breaths, and start reading up on it. The main thing you need now is the very best doctor. You could be in for a long journey with this doctor, so choose wisely, read referral sites, ask your friends. Your doctor can be the difference between two years of surgeries and 10 years of surgeries, so treat them like shoes and try on a few until you find the perfect fit. 

The third thing you want to do after confirming that you have an anal fistula is read up on them. Please, do me a favor, do NOT read testimonials on support pages yet. They will freak you out, depress you, and scare the shit out of you. Read articles on medical sites only. Do not enter the world of blogs, message boards, etc yet. It is overwhelming, and too much information. Just get some basic knowledge about your rectum and what a fistula is.

Here are some questions I recommend you ask your doctors:

1. Where exactly is my fistula located? Can you show me a drawing?

2. Can I please request an MRI and colonoscopy? (my first doctor did not do these important tests, and as a result missed a side exit of the fistula and had to operate again)

3. Is it possible that I have Crohn’s Disease? Could you please order tests for that? (this includes a colonoscopy and a blood test)

4. Do you know what could have caused this? 

5. How large is the fistula, and how easy or difficult do you think it will be to fix? (No doctor will give you a straight answer on this, but you can get an idea of how severe it is. My fistula was particularly long and tricky to fix, but not asking these questions, I had no idea until my third doctor explained this)

6. Are there certain foods I should be eating, or foods I should avoid to make this easier? (Diet will have an enormous effect on your comfort until this is over. I will have an entire post on diet soon)

7. What can I do to manage the pain?

8. What can I do to keep things clean down there?

These are just a few questions. I also recommend looking on medical sites for FAQs, and often they have a list of recommended questions to ask your doctor (though, be wary of pharmaceutical companies pushing you to ask for a medication). 

Don’t panic, and remember that every person’s experience is just that. Their own. You are different, and your experience will be different. I’ve had 2.5 years of surgeries, but you could have one surgery and be fine! Don’t let other people’s stories scare you, and don’t let your doctor get away with vague references. Be direct, be pushy, this is your ass we’re talking about. It’s important! 

If you have any good questions for doctors to add, please comment! I know I left out a bunch!

Cheers,

Leah R. Chatterjee

Welcome! What is a fistula?

Welcome to my new blog! 

For the past two and a half years I have been on a horrific medical roller coaster known as the land of the perianal fistula. I have decided to start a blog to help others in my situation cope with this debilitating, painful, and embarrassing health issue. I have gained a lot of knowledge and experience on this subject because I have lived with a perianal fistula for over two years, and have survived 8 surgeries. I am happy to report that my most recent surgery was a success, but I also want to share my journey with you because it took a LOT to reach this point.

Let’s start with the obvious question. What is a fistula? The medical dictionary describes it thusly:

fistula /fis·tu·la/ (fis´tu-lah) pl. fistulas, fis´tulae   [L.] an abnormal passage between two internal organs or from an internal organ to the body surface.

Basically, a fistula is a tunnel left behind after an abscess or infection occurs in a gland. This can occur anywhere in the body really, however we are concentrating on anal fistulas, mainly because there just isn’t much out there on the subject for the average patient. It took me so much research and trial and error to learn what I’ve learned. People simply do not want to talk about their anuses, especially when something is wrong down there. 

There are many different ways a perianal or anal fistula can occur, and different types. Mine, for example, was basically an abscess that resulted in a tunnel from my rectum that exited very close to my vagina. As you can imagine, when it exits anywhere down there, you basically are dealing with fecal matter leaking into your lady parts (or male parts, which is equally unpleasant I’m sure). This can cause all sorts of hygiene issues, infections, and general discomfort, but I don’t want to get into that yet.

Here is the best illustration I could find:

Image

 

I will try to find better ones, and maybe scan some books and fliers I’ve collected. 

My hope with this blog is to bring light to this issue, to provide people with valuable information, tips, and advice that I have gathered over the years, and to let you know that you are not alone. 75% of the population suffers from abscesses, 50% of abscesses become fistulas. YOU ARE NOT ALONE. It is important to discuss this stuff. It’s important to not be ashamed. This is not your fault, and it is not something to be embarrassed about or afraid to ask questions about. 

I want to make myself available to anyone who needs it, so if you have private questions for me, I will provide an e-mail address in my next post. I hope that this blog reaches even just one person who is in the position I was 2.5 years ago. 

Here we go!

Leah R. Chatterjee