Aftercare Instructions

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!

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




Finally Fistula Free

Hellooooo fistula warriors!

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

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

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

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

Be Back Soon!

In Solidarity,

Leah R. Chatterjee

Fistula Friends: Some Crohn’s and Ostomy support!

You 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!

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

What does not kill you… Might just leave your rectum really weak.

When you go through any sort of long-term illness, disease, or trauma, you will never cease to be amazed by the stupid things that come out of well-intentioned mouths. One of the most common cliches I heard was, “what does not kill you makes you stronger.” I’m not saying I don’t think there are situations where that might be true. But don’t say it to someone who’s had 8 surgeries on their rectum. Ever. Here’s a great blog from the Mighty on this topic:

What Does Not Kill You…
Enjoy!

Fistulotomy: a brief explanation

  
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…

 

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