What in the Bloody Hell…

 

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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

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!

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…

View original post 222 more words

C. Diff Say What?

While I am on the hunt for/creating my own surgical illustrations, let’s take a break from fistulas to discuss a nasty little bacteria called Clostridium Difficile (C. diff). This is a bacteria that lives in all of our intestines, and is normally kept at bay by good bacteria.

Why would I bring up this ugly little bacteria here on Fistula Survival Guide? Because many of you suffering with colorectal fistulas will undergo surgery, and more often than not after surgery you will be put on one or two antibiotics. Unfortunately, strong antibiotics (such as Cipro, which is commonly prescribed after surgery to prevent infection) can kill off the good bacteria in our intestines, which can allow c. diff to flourish and develop into c. diff colitis (I may refer to it as simply c. diff throughout this article).

This happened to me after my second surgery. I was having horrible diarrhea (more so than is usual for me even with IBS), stomach cramps, and nausea, but when my doctor at the time didn’t think much of it, I chalked it up to being sensitive to the antibiotics. I went ahead and charged forward with surgery number three, my very first advancement flap surgery. Weeks after the surgery, when I should have been healing and feeling better, I was still in huge amounts of pain, still feeling horribly sick to my stomach, and worst of all the surgery was not healing.

As fate would have it, my doctor left and I was sent to a new colorectal surgeon. Concerned about the frequency of my diarrhea, nausea, and lack of healing, my new doctor ordered a stool sample. Lo and behold, I was plagued with the dreaded c. diff colitis. In most cases, given a regiment of a certain antibiotics (Flagyl is the first one I was given), it will go away. I was in the unfortunate 20% that required almost 6 months of treatments, different medicines, and even participated in a study for a new c. diff medicine (turns out I was in the group given Vancomycin, which was not the new medicine). Eventually, the vancomycin cured me, but it was a long and grueling process.

After you have had c. diff colitis, you will need to be forever cautious when you have to take antibiotics, and alert your doctor to the fact that you had c. diff. Seriously–for the rest of your life. Be careful. I am not trying to scare you, but this is a disease that can and has killed people. Those are extreme cases, but it is not something to be taken lightly.

The main reason I bring this ickiness up is that there are certain things you can do to reduce your chances of getting c. diff. After surgery, while you are on antibiotics, here are a few suggestions I have (as usual, PLEASE CONSULT YOUR DOCTOR, this is just advice from my own experience, most of it given to me by my doctors):

*TAKE YOUR FLAGYL. Seriously, if you are taking Cipro or any other really strong antibiotic, do not skip your doses of Flagyl. This will help keep the c.diff at bay.

*I highly recommend taking a good probiotic (my doctor told me about florastor, which is a yeast-based probiotic, so it isn’t counteracted by the antibiotic). This beneficial bacteria can help combat c.diff

*Turmeric! Take lots of turmeric! It cannot hurt you, and is naturally anti-bacterial, anti-inflammatory, and helps to improve your intestinal flora. You can get it as a capsule, or just loose powder, which can be mixed into your juice, water, or food (the powder is cheaper and found in most spice sections at grocery stores).

*Pay attention to your body. If you feel like something is wrong, it is worth it to talk about it with your doctor. If you have been on antibiotics for 30 days or longer and start experiencing consistent watery diarrhea, fever, nausea, weight loss, loss of appetite, ASK FOR A STOOL SAMPLE TO BE TAKEN. My first doctor did not order one, despite my complaints of almost all of these symptoms. You can ask for/insist on a stool sample.

For more information, I recommend this PDF:

http://effectivehealthcare.ahrq.gov/ehc/products/115/891/cdiff_cons_fin_to_post.pdf

and this awesomely helpful website:

http://www.cdiffsupport.com/aboutcdiff.html#What_is_Clostridium_Difficile_-_in_easy

If you have a serious case, and are not recovering, I highly recommend going to an infectious disease specialist. Ultimately that is what I ended up having to do, and that is where I was given the right treatment.

To reiterate, I am not trying to scare you. I just wish I had been aware that this even existed when I was going through the Fistula of Doom. I hope you have found this helpful! Take good care of yourselves, and always keep hope. I healed. It took a long time, but I did make a full recovery. Remember that you are not alone.

In fistula solidarity,
Leah R. Chatterjee

The Fistula Blues

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