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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Self-Care and Chronic Pain

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The following is the basic script from a self-care talk I am giving in my Fistula Support Group. I thought it would be useful to share here as well. I have collected the information below over the years from my work as a community health advocate, and from living with chronic pain and an autoimmune disease for the past 7 years.

Let’s begin with The Spoon Theory because it is a useful way to explain to your friends and family what you are dealing with. The Spoon Theory is a metaphor for people living with chronic pain, chronic illness, and disabilities. The notion is that we begin each day with a certain number of spoons. Each activity we engage in takes up a certain number of spoons. For example, getting out of bed and taking a shower might use up 2 of your spoons. Going Spoon-theoryout to run errands might take up 3 of your spoons. Going to work for a full 8 hours might take up 10 of your spoons. Your spoons represent your energy, your life force, what energy you have available. Those of us living with fistulas or any chronic illness have less energy to work with, and seemingly small, everyday tasks can take up a lot of that energy. Most people get up, take a shower, make breakfast, and don’t think twice about it. I, however, have to think about my day ahead, and think about whether I will have enough spoons to take that shower, make that breakfast, AND do whatever else I wanted or planned to do that day. When you only have 12 spoons to work with in a day, you have to prioritize much more often. If you’re going to socialize, have a night out with your friends, you might need to plan to have a rest day the next day, or at least half a day of recuperating. Sometimes, inevitably, we will use more spoons than we have, and end up with a spoon deficit. When this happens, our bodies let us know, and force us to rest. Having to manage spoons doesn’t mean you can’t have a life, it just means that in order to thrive, we have to put our health first. That might mean slowing down, or doing LESS, but it doesn’t mean you can’t have fun and do fulfilling things with your life.

Self-Care Tips

  • Ask for help when you need it. It isn’t a sign of weakness. It’s easy to fall into the awful rut of feeling like a burden to our loved ones. My family regularly has to remind me that it’s okay to ask for help, that they want to help. The people who love you want you to be okay, and sometimes that means helping out when you need it.
  • Talk about your feelings. Don’t bottle things up. This might look like a therapist, or just venting to a friend over tea. If you can’t afford therapy, there are even apps now that connect you to a licensed therapist for low cost. I think that this is particularly important for people living with colorectal health issues. There is so much shame and taboo surrounding the rectum, and often we feel as though nobody wants to hear about it, or we are too ashamed to talk about it for fear of disgusting people. The truth is that there are people who will listen and understand and WANT to hear what you’re going through. You will find friends who you are safe talking with this about, and I urge you to take some leaps in vulnerability and tell at least one close friend what you are truly going through.
  • Keep a self-care checklist handy (I keep mine in a note on my phone) for days that you are really depressed, or overwhelmed by your illness/pain/disability. This can be really helpful—sometimes we don’t even realize how much we’ve been neglecting ourselves. Your list might include these questions: Have I had a glass of water today? Have I eaten recently? When was the last time I took a shower? Am I in pain, and if so, am I taking the steps needed to manage it? Have I talked to anyone today? Have I moved around or exercised at all today (it’s okay if you’re not able to)? Have I done something I enjoy and find fun? Are there things that are stressing me out that I can take action on to alleviate that worry? Self-care lists might look different for each of us, but the general idea is to keep a list handy to remind us of basic self-care when we might be too preoccupied, depressed, or overwhelmed to think of in the moment. These small self-care tasks can make a world of difference to your mood and comfort, and either way are necessary. Even if you only have the energy to do one thing on your checklist, that’s awesome, and one thing you have done to take care of yourself.
  • Self-loooooove: sex and masturbation are healthy modes of self-care. Though it might be the last thing on some of our minds, especially those of us with draining fistulas, the reality is that our bodies appreciate that kind of self-care, and it’s a totally valid way to relieve stress and tap into some joyful feelings. Orgasms are super healthy, and nothing should stop you from having them if you are able to! (as my good friend, Tyrone, always says, “Embrace your inner Samantha!”)
  • Decide to forgive yourself for canceling plans, or finding that you are unable to complete all of your tasks for the day. Living with chronic pain is exhausting, and often we want to do so much more than our bodies are able to manage in one day. I recommend letting your close friends and relatives know that your current conditions means you have to be able to cancel plans at the last minute. It’s not because you don’t want to be with them, it’s not personal, and it’s NOT YOUR FAULT. There’s really nothing you can do about the fact that your body is unpredictable at times, and that you have less energy, but your friends and family can make an effort to be understanding when you have to bail.
  • Keep a box or basket handy that can serve as a self-care kit. Put comfort items in it, and self-soothing things—coloring books and colored pencils, crossword puzzles to distract you, a few treats you enjoy (chocolates, chips, something you don’t normally have, but really enjoy), a snuggly blanket, your heating pad, anything that brings you comfort. It helps to have a kit that you can reach for when you know you need some extra comfort.
  • Get some fresh air if at all possible. Even if it just means setting up a comfy spot in your front porch or on your balcony, just sitting outside and breathing fresh air can make a world of difference to your mood, and is good for your brain.
  • Find a balance with your screen time. When you are stuck in bed for a large portion of the day, the internet can be a lifesaving connection to the outside world, so don’t shame yourself for spending more time on there. Research shows that limiting screen time is healthy, and that too much screen time can cause or exacerbate depression. I suggest setting times for yourself to take intentional breaks from the computer and phone screens throughout the day. I think that interacting with friends and support group members online is a really good outlet, so I am not suggesting you abandon social media. Just be mindful of how much time your eyes are glued to a screen, and give yourself breaks from it regularly (I set a timer for myself, so that every hour I get up and walk out on the porch, or go make myself a cup of tea; this has helped me feel more grounded, and my eyes hurt less).
  • When you get overwhelmed, remember to breathe and take things one moment at a time. I like to remind myself of what my friend tells herself, “Just do the next right thing,” and “I can only do the best I can with the information I have.” If I’m having a panic attack, I have trained myself to ask myself, “What is the next right thing?” Sometimes it’s really simple: go get a glass of water. Go to the bathroom. Take a shower. Eat something. Sometimes it’s more complicated, so if I start to spin, unsure of what the next right thing is, I try to give myself a reality check. What is the reality of the situation, and is that in alignment with how stressed out I am about it? I review the information I have on the matter, and try to see if there is an action I need to or am avoiding taking, and if not…I go back to my original question: What is the next right thing? It’s probably simpler than I thought. Sometimes the answer is to just sleep on it, sometimes it’s to make that phone call to the gas company, sometimes it’s to make an appointment with my doctor or therapist. Breaking things down into simple steps is helpful when you feel overwhelmed, and doing some cognitive check-ins to see where our emotions are valid, and where perhaps our anxiety is taking over.
  • Move! It’s important to move your body from time to time. If you can’t get out of bed, even just sitting up and doing some breathing exercises or meditating, lifting one leg at a time, lying down and sitting up, doing some gentle stretches are good for you. It’s important to keep your circulation going, and get blood flowing more efficiently to areas that need it.
  • Wear clothes you like. Even if you’re staying home all day, put on fresh clothes every day, and wear things that make you feel good. Even if it’s just pajamas you really love, don’t sit around in clothes you hate. It can be a great act of self love to put on a comfy outfit that makes you feel good, especially if you are the only person who will see it.
  • Journal and write down the feelings you don’t feel like saying out loud to anyone. Writing can be a great way to get the clutter out of your brain, process difficult emotions. Sometimes there are things you can’t say to anyone, but writing it out can feel like unpacking a heavy burden.
  • Stay in contact with the important people in your life. It is very easy to fall into an isolation pattern, where we hide from the world and the people we love, and the fortress of protection we build ends up feeling like a prison. Even if it’s just by e-mail, check in with your close friends and family regularly. Force yourself to make a phone call to someone you feel safe talking to. Just hearing another human’s voice can be powerful in keeping you feeling connected to the outside world. Sometimes it feels like the rest of the world is carrying on, moving so fast, our friends are moving on in life, while we are stuck frozen in time in a way—forced to take things slowly and listen to our bodies every day. Keeping in touch with your people keeps you connected to a world that sometimes feels like it’s only for healthy people.
  • Cry when you need to. It doesn’t matter what your gender is, humans actually NEED to cry. It’s detoxifying, clears out those tear ducts, and feels good afterwards. Don’t bottle everything up, you don’t always have to put on a brave face. I can’t emphasize this bullet point enough. LET IT OUT. Sob in the shower, blast some of your favorite sad songs, watch a tearjerker movie, whatever it takes to release some of the grief and sadness that comes along with chronic pain and illness.
  • Keep a note in your phone of all of the things in your life you are grateful for, a list you can keep updating. Start your morning by reading that list. It’s a small thing that can make a world of difference.
  • More Self-Care Tips

Here is a helpful little website that prompts you with self-care questions, should you not feel up to checking/making your own list: Self-care quiz: You Feel Like Shit

Here’s a handy image you can save to look at when you need it:

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Grounding Techniques

Grounding exercises can help bring us out of our anxiety and into the present, and can be very useful during emotional distress caused by pain. There are lots of different grounding techniques, so I urge you to look up more, and experiment with ones that work for you. Here is a useful graphic for some quick grounding basics:

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I also find guided mindfulness meditations really helpful. This is one of my favorite meditations, which really can help to ground you in your body, and really bring you into the present. I also find it helpful for checking in on my body pain, and really assessing where the pain is present, and how much of it is me bracing for pain. I urge you to try this guided body scan (my therapist directed me to this meditation, and it has really helped me over the years):

Body Scan Meditation by Jon Kabat-Zinn

Pain Relief from Distraction Exercises (from countingmyspoons.com)

Leah’s note: Some of these might seem silly, or even counterintuitive, but they are each worth a try. If you’re interested in why these techniques work, google “gate control theory of pain”

  1. Focus on your breath – relax and take a deep breath. Continue to breath in and out slowly. Try to count to at least 10 on each breath in and each breath out. As you really focus on breathing it’s hard to focus on much else, and you will find that the exhales help you relax. Keep this up as long as you can.
  2. Imagine Pain Relief – Imagine that you just got a shot of some great pain reliever in the area where it hurts, focus on how that would feel, and the sensations that would come with it. How the area of your body would feel as the pain reliever takes hold. This acts almost as a mental placebo.
  3. Focus on a different time – Think back to a time when you were not in pain, when you were enjoying life in such a way that even if you’d felt a twinge of pain you would not have noticed. Try to feel the feelings you had at that time, and really hold onto them.
  4. Find Something Funny – Whether it’s a favorite old tv series (I suggest the Golden Girls) or the latest funny movie, find something that you can laugh at. They say that laughter is the best medicine and except for when you laugh so hard it hurts, it’s hard to think about the on-going pains when you are laughing.
  5. Shock yourself – no I don’t mean electro-shock therapy, I mean find the most shocking thing you can on the internet (or a scary movie) and watch it. Research has shown that looking at something rather bad or shocking can distract you from pain better than looking at more pleasant things. So, pull up a good scary movie, or watch that latest [shocking] video on youtube.
  6. Listen to Music – When it comes to distracting myself with music, I find it very helpful to focus on building playlists and rating the music. If I’m thinking about what “bin” to fit that song into or whether or not it really deserves to be in my playlists at all, it takes a good amount of thought power, leaving little brain power to focus on the pain
  7. Play a game – like I mentioned when I’m in a really bad place I like random clicky games, but if my brain is working and I just don’t feel up to really focusing on something that matters, I’ll play some online poker. You might prefer an Xbox game that you can really get into, or some other sort of game to focus on (but seriously, Candy Crush just creates stress and we know what stress does – I swear that game just added to my insomnia
  8. Spend time with friends – If you enjoy a good phone call then call up a long-distance friend you haven’t seen in a while (or another spoonie) and have a nice long chat. If you aren’t a phone person then make some time to visit with a friend, go to them or invite them to visit you. Spending time with a friend can help distract you in so many ways, just try to avoid getting into pain-focused conversations. Best bet is if you can visit with a friend and find a way to laugh!
  9. Enjoy nature – Get outside if you can (or near a window if you can’t) and enjoy nature. Watch the birds, the squirrels, or the neighbors. That last one can be a really good distraction (but I won’t get started on that). It might even be worth installing a bird feeder just to bring more beauty to your hard (or patio), giving you something to focus on.
  10. Make some friends online – Twitter, Facebook, and online forums can be a great distraction, just ask anyone who has ever stepped foot into any of them. You only meant to be there for 5 minutes and then it’s 3 hours later. Better yet (for me, anyway) is Youtube. The reason I rarely go on youtube is because it’s a trap and I can’t get out once I get in.

In summary, when we are living with chronic pain, chronic illness, and depression (sometimes all three at once), it’s important we take these extra steps to take care of ourselves. Sometimes it can feel like we are forever treading water, trying to keep our heads above water, and these techniques and exercises can help be a little lifeboat in these turbulent waters. It can be a difficult road towards accepting the body you are currently living in, and it’s okay to grieve for the healthy body you miss having. The important thing is to reach out for support when you feel you are drowning, and try to practice some of these techniques to pull you out of really bad patches.

In solidarity always,

Leah R. 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

Fistula Friends: Some Crohn’s and Ostomy support!

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20140209-082021.jpgYou know, sometimes the universe has your back. I’ve been wanting to write about Crohn’s disease and ostomy tips for quite some time, but it’s hard to write authentically about what you don’t know. I could easily gather a lot of info, and provide you with an article you could’ve written yourself with enough Google searching, but that’s not really what this blog is about. It’s about helping you through this with some guidance from someone who’s been there.

That’s why I’m so excited that Jen connected with me recently. She writes a really wonderful blog on Tumblr that covers a lot of ground, and has especially great info Crohn’s and ostomy tips. I particularly love her attitude about it all, and I think you’ll find it refreshing.

Jen’s Crohnic Crohn’s blog!

Jen also pointed me towards this wonderful blog that has great info about ostomy products, tips, info on IBD, and has some great tips for diet and nutrition (especially if you’re vegan):

The Veganostomy Blog

I would really love to give extra voice to these topics (Crohn’s, ostomy, IBD), and I think a great way to do that is to interview several people in the community and share their stories. If you are interested in participating in this (and you may do so anonymously if preferred) please contact me directly at leahruthe@gmail.com

So much love and solidarity,

Leah R Chatterjee

Need Support? We’ve got your backside!

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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

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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.

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

The Fistula Blues

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Having a perianal/anal fistula is an extremely painful experience, both physically and emotionally, and it can often take a long time to fix it. I have been living with a perianal fistula for over two and a half years, and though the last two surgeries I had have successfully closed the fistula, the outside “exit hole” (for lack of a better term) is still in the final healing stages. One of the worst parts of colorectal health issues in general is that nobody wants to talk about them. Even for those of us with the strongest stomachs, it is rather gross to describe to your friends, and embarrassing to explain to strangers or acquaintances. Let’s face it, the rectum is a sensitive topic.20140209-074549.jpg

While there are endless ass jokes to be made, and I have found humor helpful in both explaining my situation and in coping with it in general, there is a really dark and messed up reality of living with a debilitating health problem–especially when that health problem is in an area that is hard to talk about openly. I remember slowly slipping into a fairly severe state of depression about three months into the whole fiasco. I was in pain most of the time, I was leaking fecal matter constantly (spent the better part of the year in adult diapers), I felt dirty and disgusting all of the time, and I felt isolated because nobody fully understood what I was going through. I found myself spending most of my days in bed watching Netflix and escaping into my books. Ninety percent of the social plans I made I would have to cancel due to pain or poo leakage, I ended up having to quit my job because it was too physically demanding when I could barely get out of bed most days, and I honestly cannot remember a darker time in my life.

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I think it’s important to understand how much pain can change your personality, mood, and general health. I became a different person after living with pain for over a month. The pain killers made me feel like crap, and added to my depression, and the pain itself began to wear on me and make me irritable, and even verbally abusive at times towards loved ones. As the months went by with little to no success from treatments and surgeries, I began to fall into the grips of complete fear and hopelessness. Would I spend the rest of my life leaking poo into my vagina? Would I have to live with constant pain for the rest of my life? What if they NEVER managed to close the fistula? Could I envision a future like that? My reality at that time (about a year ago) was that I might have to. At that point, even the doctors could not tell me with any certainty that they could fix my fistula. It was even mentioned to me by my first doctor that there was a chance I might have to just live with a semi-permanent seton band hanging out of my ass. All of this was terrifying to me, and I realized that I would have to find ways to live with the pain and grossness and discomfort, even if just temporarily. I couldn’t sustain the level of depression I was at, and I didn’t want to be this person I barely recognized.
funnypillladyOne of the first things I did was try to ween myself off of my pain killers. I am quite sensitive to narcotics, and pills in general, and I knew a huge part of my mood was being effected negatively by the medications. I am by no means suggesting you should stop taking your medications without talking to your doctor. In my case, my doctor thought it would be good for me to try to take as little as I could, so I did. I was pointed in the direction of “gating” by a close friend who lives with MS. I read about it, and began practicing it. I’m not going to go into a full explanation of the gate control theory of pain and the neuroscience behind it, but here is a link to the best/simplest explanation I have found for it:

http://gracefulagony.wordpress.com/2010/03/04/gate-control-theory-of-pain/

20140209-082042.jpgGating basically helps distract the focus of the pain signals by redirecting them with either physical, mental, emotional or active distraction methods (for example, applying heat or cold, listening to loud music, going for a walk or mild exercise). Seriously, check out that link and read up a little more about it.

Another thing I started doing, with the help of my therapist, was to start talking about what I was going through with my friends.20140209-082021.jpg I began to open up about my fistula frustrations on facebook even. I decided to stop giving in to feelings of shame and embarrassment, and to counter any negative feelings I had about myself with constant reality checks (some of this I learned in therapy as Cognitive Behavioral Therapy, which is basically a long process of retraining your brain to stop negative thought patterns). I did not do anything wrong, I am not disgusting–I am living with something that creates a lot of ickiness, but it is not my fault. This might sound sort of stupid when you first start doing it, but after a while you start to do it automatically, and suddenly you realize you believe it. It wasn’t easy, especially since I am prone to depression, cynicism, and general pessimism.

flowerpowerAnother huge help has been herbal supplements, which I realize are not recognized by Western medicine. I can tell you that fish oil and flower essences helped me a lot. Flower essences helped my mood and anxiety hugely, and are almost 100% harmless. Here is a handy list of common flower essences and their uses from Bach flower essences (I am posting this link because they are the easiest to get ahold of, and seem to be a legit company):
http://www.bachflower.com/original-bach-flower-remedies/

I also noticed that Omega 3 (I specifically used Omega3 Joy brand, but there are plenty of omega3great options out there) helped elevate my spirits some, too. I also found turmeric to be extremely helpful–it is great for anyone suffering from IBS or IBD as it is a natural antiseptic and helps to settle your stomach and kill off harmful bacteria. Turmeric is also quite good for circulation and lessening inflammation, turmericwhich can help some with the pain. I’ll also add that while you can get turmeric in capsule form, it is much cheaper to buy the loose powder in the spice section (or the international section depending on the store). You can mix it into your food or drinks, and it has very little flavor. Please, of course, discuss any supplements you might want to try with your doctor before taking them. As far as I know, the supplements I’ve recommended are harmless, but you always want to check with a medical professional first, especially if you are taking other medications or have sensitivities.

I urge you, more than anything, to speak out and reach out. E-mail me at fistulasurvival@gmail.com if you have nobody else to talk to about this stuff. It might take a me a bit of time, but I promise I will get back to you. Talk to your friends. If they are good ones, and I hope they are, they will listen and be surprisingly supportive. You may even find out that they or someone they know have been through something similar. I am constantly blown away by the people who have told me their stories, or offered love and support. It is ridiculous that anyone suffering from ANY health problem should feel ashamed or afraid to talk about it openly. The only way to combat the taboo surrounding colorectal problems is to be loud. Sure, you may encounter some negative reactions, but I have to say that I have had overwhelmingly positive responses to my sharing. I have learned more about my own strength and character by opening myself up to others, and I hope that by sharing my experience with you I can encourage you to do the same. This world can be a scary, unjust, and confusing place, but there is a lot of love to be found out there. I’m not trying to be cheesy, nor am I minimizing the suffering that you may be going through, but I honestly believe that if I can survive this damn fistula, so can you. Most importantly, I promise you, you are not alone.

Love and light amidst the tunnel of doom,
Leah R. Chatterjee

Who You Calling a Seton?

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One of the lamest parts about having a chronic fistula is having the dreaded seton band hanging there like a rubber noose of doom. Often doctors use the seton band to aid in healing and draining of the fistula. Here is the best (and least gross) image I could find:

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The worst part of this seemingly harmless rubber band is that it hangs out of your bum (depending on where your fistula is located), and creates all sorts of irritation, pain, and hygiene issues. I have a few suggestions for how to cope with this little rubber demon. Here are a few items I recommend you purchase:

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First and foremost you are going to want to keep the area around the band (the part of the band that sticks out) as clean as possible. I recommend getting a simple squeeze bottle that you can keep in the bathroom, and a smaller one to take with you for longer outings. Just fill it up with warm water, and after a bowel movement or even urinating, just spray yourself down! I’ve found water works the best for getting everything super clean, though baby wipes are a lifesaver when you’re out n’ about.

Now, PAY ATTENTION TO THIS PART!!! I wasn’t given this tip until about a month of living with the seton bands. First of all, go out and get some Calmoseptine ointment. You can order some on Amazon.com (I got a great deal on a bulk purchase), or you can ask your pharmacist to order some–it’s over the counter, but they often don’t carry it in most drug stores. Calmoseptine has helped me so much throughout the entire fistula journey, but was most helpful during the awful seton days. Here is what I did:

1. Put a generous amount of Calmoseptine (in a pinch, Butt Paste in the baby aisle is basically the same thing without the menthol cooling effect) on the area surrounding the protruding band.

2. Take a small layer of gauze (not too thick or it will cause its own chaffing), and fold it around the band that is sticking out.

3. If you can, try to tuck the band back a bit so that it doesn’t move as much when you walk.

I had days where I couldn’t walk because the chaffing of the band caused so much irritation it was too painful to move my lower half. The Calmoseptine combined with the gauze definitely helped a lot. I also recommend you double your sitz bath usage. You can add some lavender essential oil to the warm water to calm the skin, or some witch hazel to ease itching and inflammation (use caution as certain oils and ointments can cause more irritation for people who have sensitivities to them).

Your time with the seton band (or bands in some cases) could be as short as a few weeks, or it could be months. I had mine in for 5 months, and they were probably some of my worst days. Don’t lose hope! The suggestions I’ve made helped me so much, but I didn’t learn them until a month in. If those methods don’t ease the irritation, talk to your doctor. Never be afraid to tell your doctor how much pain or discomfort you’re feeling. It took me a month to speak up, and only then did my doctor suggest Calmoseptine. Unfortunately, most doctors and surgeons do not prepare you or give you all of the tips you need. You have to ask them. Be pushy. Don’t forget that YOU are in charge of your recovery and healing, and THEY work for US.

Be bold, be brave, and keep your head up!

Until next week,

Leah R. Chatterjee

fistulasurvival@gmail.com