Self-Care and Chronic Pain

Image

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:

selfcare_printable[1]

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:

8655233[1]

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

Message me on Facebook

Find Support, You’re NOT Alone

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

Fistula Friends: Some Crohn’s and Ostomy support!

Image

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!

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.

What in the Bloody Hell…

Image

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

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

Let’s Talk About Sitz, Baby

Image

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