My Health Journey Thus Far…

…and Why I’m Still Out Here Talking About Fistulas…

D99C5A91-4F91-4257-A362-F97DD03D1F57This July it will have been 10 years since I got the abscess that changed my life. Ten years ago I was about to turn 29, and I was not a stranger to struggle. I had lived with PMDD (premenstrual dysphoric disorder) from the time I was a teenager, so had been through the mill with medications, misdiagnoses, etc my whole adult life. The fistula, however, turned everything upside down for me. I had never had my health taken from me in such a huge way like that before. Suddenly I was hurled into this new reality—a tunnel had formed from my rectum to my vagina, and suddenly my life became managing pain, fecal matter leaking, endless doctor appointments, surgery after surgery, a c diff infection for a year from too many antibiotics, more surgeries…

My fistula was finally fixed in 2013 at Cleveland Clinic by Dr. Tracy Hull. She used a technique that was new at the time—after surgery she kept me in the hospital for 4 days with a wound vac creating an airtight seal on the advancement flap. I am certain the 4 days with the wound vac is what led to the surgery being a success. Unfortunately, my health struggles did not end with that successful surgery. I was fistula free, but rapidly E05A1C1A-D25C-4F97-A767-8AA54570FA9Cafter the surgery my periods got worse and worse. It got to the point that I was having debilitating cramps almost all month long, and none of my doctors were interested in getting to the bottom of it beyond telling me I just had bad periods, and maybe I should try birth control.

I finally saw a naturopath who thought it would be worth it to get an ultrasound to see if anything showed up. The ultrasound showed evidence of adenomyosis (endometrial tissue found in the lining of the uterus that can be quite painful), and showing this to my obgyn provided reason enough to explore the idea of endometriosis (often adenomyosis and endometriosis go hand in hand). I went through 6 months on a drug that mimics menopause, called Lupron, to see if the pain got better. Now, I had wanted a hysterectomy since I was a teenager, so I didn’t want to do the Lupron trial. I was ready to have this all out of me. I had been ready for a long time. But because I was still young, and society is pretty wack, I had to do 6 months on Lupron to prove that a hysterectomy would help me. The Lupron had a lot of really awful side effects, but by the 3rd month I felt like a new person…I felt like I did before my period came and wrecked my life. It was awesome. 93D2F4E3-2A52-4221-B5A2-6665179C9B2E

So I had the total hysterectomy and oophorectomy, and all of the endometriosis removed in April of 2017. I don’t regret it. I’m finally free of debilitating cramps, awful periods, and crippling mood swings. Unfortunately, shortly after the hysterectomy, I began to have terrible joint pain. It got worse and worse until some days I could barely move. Once again I was back to going from doctor to doctor trying to figure out what was wrong. Had the hysterectomy caused this? Was this a symptom of early menopause? I read about many women having joint pain during and after menopause, and thought maybe that was it. But as the months went by, I became more and more immobile. I would wake up in the morning, and have to crawl to the bathroom because I simply could not stand upright.

After months of seeing different doctors, I finally found a rheumatologist who thought she knew what was going on. She ran some bloodwork, and did a joint ultrasound. My bloodwork came back to show that I was HLA-B27 positive, the ultrasound showed inflammation in my joints, and she felt certain that combined with my symptoms this all pointed to peripheral spondyloarthritis. Around the same time, a dermatologist diagnosed me with hidradenitis suppurativa (HS), an autoimmune issue that is also HLA-B27 related, and causes abscesses and boils. I’m fairly certain this is what caused the abscess that led to my fistula. I spent all of 2018 trying different anti inflammatory medications. I tried Humira, which I had a horrible reaction to, and ended up with awful nerve pain for 6 months. My rheumatologist recently threw up her hands, and thinks I need to see a functional medicine doctor to get to the bottom of my gut issues. I had bad reactions to every medicine we tried.AF86E81B-F5EB-4F7F-815B-241E9A9004AD

I have had some success with getting my inflammation out of the danger zone with nutritional changes, but am still in the process of figuring out my gut issues. I am left with a diagnosis of peripheral spondyloarthritis, HS, and IBS-D. I still cope with chronic, and sometimes debilitating joint pain. I am sharing my current health story because sometimes you think fixing one thing will be the end of it, but here I am, almost 10 years later…FISTULA FREE…but still dealing with health problems, autoimmune diseases, and chronic pain. The reason I never stop advocating for fistula patients is simple: Out of all of the health issues I’ve had, that was the hardest one to talk about. It was the most isolating. It was steeped in the most shame. And 10 years later it is STILL not widely talked about. The support group I started in 2012 has grown to thousands of members.

I think it’s important for people to hear that healing is not linear, and sometimes it’s just an ongoing journey. No one fistula journey is the same. Sometimes major surgeries can unleash havoc on your body, sometimes you just have bad luck, sometimes the fistula isn’t the end of your journey, it’s the beginning. I’m not saying you should do this, but I have found gratitude in the journey. As much as I long to be physically well, I know that I would not have stumbled upon my life purposes, I would not have learned that I am an artist, I would not have realized what an awesome advocate I am for awareness. I don’t know that I would have discovered any of that had I not gotten sick. I am not glad I’m sick, I would love so much to have a healthier, more functional body, but I have found some level of acceptance for where I am.

And I will never stop raising awareness for fistulas, especially colorectal ones.

Love and solidarity,

Leah R. Chatterjee

An Open Letter to All Colorectal Surgeons

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To Whom it May Concern (Are you a colorectal surgeon? You should be concerned):

A while ago I was talking with a close friend (I’ll call her Allie) about her latest experience seeing one of the best colorectal surgeons in the country. Allie’s fistula struggle had been a long one, and was complicated by Crohn’s disease. Her quality of life had been so low that year that she finally decided it was worth it to brave the trip to get the opinion of one of the best.

This surgeon gave her good advice, and did a thorough examination, but what they said to my friend has lingered in my brain for over a year now. They told her about a patient of theirs who had a bunch of kids and over ten setons. They told my friend about how active, productive, and awesome this patient was.

Let me explain how problematic this kind of anecdotal story is. Imagine living with multiple bands hanging out of your ass, all kinds of leakage (hours spent keeping things clean), all of the complications that come with Crohn’s disease, and being in constant pain. Imagine these conditions completely changing your entire life–having to quit a career you loved, being unable to do the things you used to enjoy, coping with the deep depression that comes with being in constant pain…

Now imagine a doctor telling you about a superstar woman, living with similar issues, but just rocking life anyway. Imagine comparing yourself to this mythological creature who has kids and a job, yet somehow has energy to go jogging with her bajillion setons just gently swishing along.

Whatever the intentions of the surgeon telling this story, the result is leaving the patient feeling like, “Oh. Great. So I’m just not trying hard enough. What’s wrong with me? Why can this woman be a superstar, but I am a wreck?” The other consequence of telling a patient a story like that is the patient ends up feeling their doctor doesn’t believe them. If you are telling your patient a story about how amazing this patient is doing, who has been through the same kind of thing you are going through, you are also implying that you don’t particularly believe your patient is as badly off as they say they are.

I spent three years with a fistula, went through eight surgeries (not including EUAs and L&Ds), and I don’t have Crohn’s disease to contend with. I. Was. Wrecked. I lost my job, my social life, and on many days my will to go on. I have spoken to hundreds of fistula sufferers, I run an online fistula support group with thousands of members, and I can tell you that stories like the one this surgeon told my friend are rare. More often than not this condition is debilitating, messy, painful, and depressing. I can also tell you that stories like this are very common–so many fistula patients are living with not just the awful symptoms of having a fistula, but with navigating a health system filled with doctors who won’t believe them about their pain levels. This is UNACCEPTABLE.

I urge you to please BELIEVE your patients. They know more about how their bodies are feeling than you do. You would do yourself and your patients a great service by taking the small steps towards learning what your patient is actually going through, and letting them know that you believe them–believe that their pain is real. It’s not that hard, just imagine having a tunnel that’s eaten its way through important bits, and you’re leaking fecal matter into places it shouldn’t, like your vagina. That’s a good start.

And for the love of all that is holy, do NOT tell them about this one superstar patient you have. Not only is it not helpful, it’s psychologically damaging.

Regards,

Leah R. Chatterjee

(And to my dear friend “Allie,” if you are reading this, you ARE a superstar badass warrior)

New Illustrations

Hi Fistula Warriors,

Starting this post for my fistula medical illustrations. I’ve come a long way in my drawings since my first, rather crude, advancement flap drawing! It’s pretty hard to find  images of surgeries and anatomy that don’t cost a bunch to use, so I’m starting my own collection. You are welcome to share and print any of these for non-profit purposes only, I just ask that you leave my copyright watermark in place. I’ll be adding more over time, so check back for more.

Solidarity,

Leah Chatterjee

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Finally Fistula Free

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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.

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Art by Jennifer Doolan

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

Quit the Butts for Your Butt!

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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.

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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.

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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

Welcome! What is a fistula?

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Welcome to my fistula 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.

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Image Credit: Southwest Surgical Associates

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.

 

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