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

20140209-082021.jpg

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

img_1297

10627896-84AE-45E7-8865-62046BD604C993D2F4E3-2A52-4221-B5A2-6665179C9B2E

Aftercare Instructions

Image

Many of us don’t get proper aftercare instructions after fistula surgery. A friend in my support group shared photos of her aftercare instructions, and they were so good that I had to type them up to share with all of you. I turned them into images so that they can be easily saved and shared from most platforms. Please feel free to save and share them!

Please note that these instructions aren’t perfect, just the best I have seen so far, and they won’t apply to everyone. If you are unsure about your aftercare, I urge you to call your surgeon’s office to have them answer any questions.

(All of this information comes from a handout by Alberta Health Services)

En Español:

Instrucciones de descarga despuès de la cirugìa anal

(Informacion crèdito a Alberta Health Services)

Cuidandando tu àrea anal

1. Toma un baño de asiento tres o cuatro veces al dìa. Limpia la bañera antes y despuès de su baño. No use aceites, baños de burbujas, lociones, o polvos en su àrea anal.

2. Es possible que tenga una secreciòn amarilla en sù àrea anal. Es posible que tambièn tenga sangre en la zona, especialmente despuès de movimientos intestinales.

3. No demore la evacuaciòn intestinal. Vacìa tus intestinos pronto cuando sientes la necesidad. No te sientes en el baño por mucho tiempo. Siempre toma un baño de asiento despuès de la ecvacuaciòn intestinal. Trata de no aser tension ni estreñirte.

4. Use una compresa frìa en la àrea anal para ayudar con el dolor.

5. NO se siente en una almohada en forma de rosquillas. Presionan sobrè la àrea que esta sanando.

 

En Español:

Instrucciones de descarga despuès de la cirugìa anal

(Informacion crèdito a Alberta Health Services)

Llama a su cirujano si tienes: 

* Escalofrìos o fiebre (temperatura sobre 38.5° C o 101.3° F)

* Estreñimiento que no mejora

* Dolor que no mejora con medicamentos

* Cuàgulos de sangre viniendo de la àrea anal

* Drenaje de la zona anal que huele mal

* Sangrando abudante (remojando una almohadilla gruesa en menos de una hora)

* Problemas pasando la orina

** llama 911 si tienes dolor repentino en el pecho o dificultad para respirar**

 

En Español:

Informaciòn de seguimiento para la cirugìa anal

Procedencia: Alberta Health Services

Movimiento intesinales despues de su cirugìa

  • Después de la cirugía, puedes contar con un poco de de dolor con su primer movimiento intestinal. No demore teniendo una evacuación intestinal. Esto solo hace que su materia fecal sea más dura y causa más dolor cuando eventualmente tenga una evacuación intestinal.
  • Toma medicamentos para el dolor 30 minutos antes de evacuacìon intestinal
  • Vacíe sus intestinos tan pronto como sienta la necesidad
  • No te sientes en el baño por largos períodos de tiempo. Esto puede causar presión, hinchazón y sangradura. Siéntate en el baño solo el tiempo que sea necesario para vaciar los intestinos. 
  • Toma un baño de asiento después de cada evacuación para limpiar y calmar su área anal.
  • Trata de no estreñirse o esforzarse con los deposiciones. Debe tener una evacuación intestinal el segundo día de la cirugía. Llama a su médico si está comiendo fibra exta o está tomando laxantes prescritos, y todavía está estreñido.

Cuando tù lleges a casa

  • Después de la cirugía, debe levantarse y hacer muchas caminatas cortas. Levantándose temprano ayuda a recuperar su fuerza, estimula buena circulación, ayuda a pasar gas y ayuda a que sus intestinos comiencen a funcionar. Cuando el dolor se comienza mejorar, aumente lentamente la distancia. Haga que alguien camine con usted hasta que esté firme en sus pies.
  • Puedes aumentar tus actividades como te sientas capaz.
  • Puedes volver a tus actividades ordinaro si no hay dolor.

Cuando llamar a su cirujano

  • Fiebre (temperatura sobre 38° C o 101.3° F
  • Dolor que no mejora con medicamentos
  • Problemas para orinar
  • Coágulos de sangre viniendo de su área anal
  • Estreñimiento que no mejora
  • Drenaje de la zona anal que huele mal
  • Sangrado abundante (remojando una almohadilla de gasa gruesa en menos de una hora)

Finally Fistula Free

Image

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.

ffflogo

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

Need Support? We’ve got your backside!

Image

This disease can be so isolating, can feel so hopeless, and can be extremely hard to talk about. We have been building and growing a great online support group on Facebook over the past few years. Thanks to some really open and lovely people, it has become a really wonderful space to find support, advice, solidarity, and understanding.

If you think that could be helpful to you, please check it out!

Fistula Support Group (the group I run)

*** Edit, I recently met Jen, who runs a great support group just for women! Here’s the link to that group:

Abscess/Fistula Support for Women
New post coming soon!

Big Love,

Leah R Chatterjee

Fistulotomy: a brief explanation

Image


1. A probe is inserted, and the surgeon will cut open along the entire length of the fistula, from the internal opening to the external opening.

2. The surgeon will then flush out the contents of the now-open tract, and flatten it out.

3. Finally, the surgeon will sew the skin edges of the tract to keep it flat, and ideally the fistula will heal over the course of a month or two into a flat scar.

Advancement Flap Surgery

Image

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!

Image

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