by Leah Ruthe Chatterjee
by Leah Ruthe Chatterjee
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.
Leah R. Chatterjee
(And to my dear friend “Allie,” if you are reading this, you ARE a superstar badass warrior)
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.
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 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):
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 firstname.lastname@example.org
So much love and solidarity,
Leah R Chatterjee
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!
Leah R Chatterjee
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.
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 email@example.com. Sometimes it can take me a while to respond, but I will respond.
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
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.
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.
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
If you have any personal or private (or embarrassing) questions for me, the fastest way to reach me is to send me a message on my facebook page Fistula Survival Guide (facebook: @fistulasurvival)
You can also send me an e-mail at firstname.lastname@example.org, but I don’t check this as often, and it can take me weeks to get through all of the e-mail requests.
Please feel free to write me with questions, advice or tips, feedback, or general support. I might not be able to answer every question, but I’ll do my darnedest to try. Sometimes it’s nice to just have someone who’s been through the same thing to talk to, and I always can find time to do that for anyone who needs extra support.
Leah R. Chatterjee