Quit the Butts for Your Butt!

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

Let’s Talk About Sitz

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:

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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…

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Let’s Talk About Sitz, Baby

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:

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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 spend most of your day in it if you wanted.

The Sitz bath really helps the draining, and if you have a seton band (we’ll get into these soon, but basically it’s a band that is placed in the fistula to facilitate draining) it will provide a lot of relief for the inevitable skin irritation caused by the band rubbing against your skin. Post-surgery Sitz baths will really help with the pain, and will assist you in keeping the area clean when it is too tender to use toilet paper.

When I was first diagnosed two and a half years ago, I was a bit shy about using the Sitz bath at first. It was kind of annoying to lug it out, deal with drying myself off afterwards, cleaning the thing…it’s a process! My doctor kept pressing me to use it more often, so finally I gave in and started using it at least three times a day. What a huge difference it made! I promise I am not being paid to advertise for products, I just want you to know what worked best for me.

Go out, buy yourself a sitz bath (they are fairly cheap and found at most drug stores), fill it up, and SIT.

Next week I’ll talk about diet and helpful supplements!

Until then,

Leah R. Chatterjee

The Pain

I think one of the most important issues to address concerning anal/perianal fistulas is the the pain. I have learned that the rectum is one of the worst places to have pain, and it is a tricky type of pain to treat. Over the past 2.5 years I have been given every type of pain killer you can imagine. Even now, after a successful surgery, I am still healing and still in a significant amount of pain all of the time. 

Chronic pain sucks. It can change you. If you have been diagnosed with an anal fistula, and you are suffering from serious to mild pain, you need to address this with your doctor. Do not be shy about it, do not try to put on a brave face, do not “suck it up.” Pain is not good for healing, and it’s not good for your emotional or mental health either. If you are like me, pain medications can be tricky. Most narcotics make me nauseous and depressed, but I ended up having to take Ultracet (which is just Tramadol with Tylenol). If your pain meds make you sick, ask your doctor if you can try something else, and ask for anti-nausea medication if necessary. 

I cannot recommend ice packs highly enough. I keep three gel ice packs in my freezer at all times. Wrap it in a towel or dish cloth and lie down on it, or wedge it in between your legs depending on where your fistula is located. Leave it on there for about 15 minutes, and take breaks. It helps so much to relieve the ache, especially right after surgery.

As for post-surgery pain, STAY ON TOP OF YOUR PAIN MEDS!!!! This is so important. You need to rest, sleep, and heal. You can’t do that if you are in excruciating pain. I hate pain killers, so trust me, I know. You might be tempted to skip a dose and tough it out. Don’t. I promise you, you will regret it in a few hours. The thing with pain is that if you let it get worse it takes longer to manage it. If you stay on top of your meds, take them every 4-6 hours as directed, you can keep your pain pretty mild. You won’t need to take so many after the first few days, but don’t try to be tough, don’t try to be brave. Just take the dang pills. If they make you severely nauseous, ask for a prescription for Zofran or some other anti-nausea meds. Other things that help with nausea are ginger, cinnamon, peppermint oil. Take your pain meds with food! This is a big deal! Eat first, then take a pill, in that order.

The hard part is the chronic pain that lingers throughout the ordeal. You might experience weeks where you feel fine, and can move around great. You will definitely experience days where it’s hard to get up and down the stairs, or get out of bed at all. This can get very frustrating and depressing. I highly recommend that you read up on gating methods. A friend of mine who has MS pointed me in this direction, and it has saved me so much grief. This method basically teaches you to distract yourself in various ways from the pain (listening to music, for example, while you do chores). Meditation helps a great deal, too. I struggle with meditation, but there are lots of great guided meditations on youtube that are super helpful. Breathing helps. Acupuncture is great if you can afford it. You might also ask your doctor to refer you to a pain management clinic. 

Try to force yourself to move. Take little walks, even just around your front yard. Keeping your circulation going is really important for healing. Know your limits, and don’t overdo it, but try to move a little bit every day.

Realize that pain is going to effect your social life. One night out can mean three days in bed. That might be worth it, your call. Make sure when you do go out to take steps to make it a comfortable experience. Buy one of these:

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There are fancier ones out there, but this helps with sitting. Some doctors will tell you not to sit on this right after surgery because it spreads your butt cheeks and can cause more pain. This wasn’t the case for me, but everyone is different. Bring wipes, gauze, and whatever else you might need while you’re out. I will have an entire post on helpful products, but my point here is that if you do venture out in the world, prepare yourself. It’s like going out with a baby, you need supplies.

I hope this is helpful. I will be asking a few doctors to write guest posts for me about pain management in the near future. If you have any tips for dealing with pain, please comment or e-mail me at fistulasurvival@gmail.com with your advice. 

Leah R. Chatterjee

 

The Diagnosis

Let’s start at the beginning of my journey: The dreaded diagnosis.

The whole adventure began when I began to feel an ache in the area very close to my vagina. At first it felt like a bad bruise, but within 48 hours I was in so much pain that I made an emergency appointment with my gynecologist (I seriously thought it was a vaginal issue). She realized immediately that it was an abscess, and sent me to the ER at Sibley Hospital in DC. After possibly the most pleasant ER intake I have ever experienced, a colorectal surgeon showed up and drained my abscess. This was no major thing, they applied local anesthesia and cut it open right there. It was a fairly painful recovery of about two weeks, but afterwards I felt fine. 

I went back to the same surgeon about a month later for a check up, and was informed that my abscess had resulted in a fistula. I have to tell you, it was very confusing. My doctor did not explain it very well to me, gave me no indication of what was possibly in store for me, and led me to believe I would need one operation, and that would be the end of it.

Here is where I want to scream at you:

GET A SECOND, THIRD AND FOURTH OPINION! 

Please! Please! I beg of you, do your research, read patient reviews, find a doctor who communicates well with you. Ask a million questions. If you feel confused at the end of your appointment, your doctor has not explained things well enough to you. If you find yourself doing all of the research yourself, looking up explanations, reading other people’s horror stories, YOUR DOCTOR IS NOT EXPLAINING THINGS WELL ENOUGH TO YOU. This entry is about diagnosis only, so I won’t get into how badly this doctor screwed with me, but basically I wasted almost a year of my life with the wrong doctor. Don’t do that. If you are frustrated, there is nothing wrong with shopping around for a better fit. I wish I had done this early on, I wish someone had told me to find another doctor. 

The first thing to do when you get a diagnosis of an anal fistula is to force your doctor to take time with you to explain it. Make them show you pamphlets, books with illustrations (trust me, every colorectal doctor’s office has them), make them draw it for you themselves. Do not leave that building without asking all of your questions, and don’t be embarrassed to ask questions like, “What do I do about poo leaking into my vagina?” They will not bat an eyelash at questions like that. 

The second thing to do is go home, take some deep breaths, and start reading up on it. The main thing you need now is the very best doctor. You could be in for a long journey with this doctor, so choose wisely, read referral sites, ask your friends. Your doctor can be the difference between two years of surgeries and 10 years of surgeries, so treat them like shoes and try on a few until you find the perfect fit. 

The third thing you want to do after confirming that you have an anal fistula is read up on them. Please, do me a favor, do NOT read testimonials on support pages yet. They will freak you out, depress you, and scare the shit out of you. Read articles on medical sites only. Do not enter the world of blogs, message boards, etc yet. It is overwhelming, and too much information. Just get some basic knowledge about your rectum and what a fistula is.

Here are some questions I recommend you ask your doctors:

1. Where exactly is my fistula located? Can you show me a drawing?

2. Can I please request an MRI and colonoscopy? (my first doctor did not do these important tests, and as a result missed a side exit of the fistula and had to operate again)

3. Is it possible that I have Crohn’s Disease? Could you please order tests for that? (this includes a colonoscopy and a blood test)

4. Do you know what could have caused this? 

5. How large is the fistula, and how easy or difficult do you think it will be to fix? (No doctor will give you a straight answer on this, but you can get an idea of how severe it is. My fistula was particularly long and tricky to fix, but not asking these questions, I had no idea until my third doctor explained this)

6. Are there certain foods I should be eating, or foods I should avoid to make this easier? (Diet will have an enormous effect on your comfort until this is over. I will have an entire post on diet soon)

7. What can I do to manage the pain?

8. What can I do to keep things clean down there?

These are just a few questions. I also recommend looking on medical sites for FAQs, and often they have a list of recommended questions to ask your doctor (though, be wary of pharmaceutical companies pushing you to ask for a medication). 

Don’t panic, and remember that every person’s experience is just that. Their own. You are different, and your experience will be different. I’ve had 2.5 years of surgeries, but you could have one surgery and be fine! Don’t let other people’s stories scare you, and don’t let your doctor get away with vague references. Be direct, be pushy, this is your ass we’re talking about. It’s important! 

If you have any good questions for doctors to add, please comment! I know I left out a bunch!

Cheers,

Leah R. Chatterjee

Welcome! What is a fistula?

Welcome to my new blog! 

For the past two and a half years I have been on a horrific medical roller coaster known as the land of the perianal fistula. I have decided to start a blog to help others in my situation cope with this debilitating, painful, and embarrassing health issue. I have gained a lot of knowledge and experience on this subject because I have lived with a perianal fistula for over two years, and have survived 8 surgeries. I am happy to report that my most recent surgery was a success, but I also want to share my journey with you because it took a LOT to reach this point.

Let’s start with the obvious question. What is a fistula? The medical dictionary describes it thusly:

fistula /fis·tu·la/ (fis´tu-lah) pl. fistulas, fis´tulae   [L.] an abnormal passage between two internal organs or from an internal organ to the body surface.

Basically, a fistula is a tunnel left behind after an abscess or infection occurs in a gland. This can occur anywhere in the body really, however we are concentrating on anal fistulas, mainly because there just isn’t much out there on the subject for the average patient. It took me so much research and trial and error to learn what I’ve learned. People simply do not want to talk about their anuses, especially when something is wrong down there. 

There are many different ways a perianal or anal fistula can occur, and different types. Mine, for example, was basically an abscess that resulted in a tunnel from my rectum that exited very close to my vagina. As you can imagine, when it exits anywhere down there, you basically are dealing with fecal matter leaking into your lady parts (or male parts, which is equally unpleasant I’m sure). This can cause all sorts of hygiene issues, infections, and general discomfort, but I don’t want to get into that yet.

Here is the best illustration I could find:

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I will try to find better ones, and maybe scan some books and fliers I’ve collected. 

My hope with this blog is to bring light to this issue, to provide people with valuable information, tips, and advice that I have gathered over the years, and to let you know that you are not alone. 75% of the population suffers from abscesses, 50% of abscesses become fistulas. YOU ARE NOT ALONE. It is important to discuss this stuff. It’s important to not be ashamed. This is not your fault, and it is not something to be embarrassed about or afraid to ask questions about. 

I want to make myself available to anyone who needs it, so if you have private questions for me, I will provide an e-mail address in my next post. I hope that this blog reaches even just one person who is in the position I was 2.5 years ago. 

Here we go!

Leah R. Chatterjee