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

Who You Calling a Seton?

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One of the lamest parts about having a chronic fistula is having the dreaded seton band hanging there like a rubber noose of doom. Often doctors use the seton band to aid in healing and draining of the fistula. Here is the best (and least gross) image I could find:

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The worst part of this seemingly harmless rubber band is that it hangs out of your bum (depending on where your fistula is located), and creates all sorts of irritation, pain, and hygiene issues. I have a few suggestions for how to cope with this little rubber demon. Here are a few items I recommend you purchase:

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First and foremost you are going to want to keep the area around the band (the part of the band that sticks out) as clean as possible. I recommend getting a simple squeeze bottle that you can keep in the bathroom, and a smaller one to take with you for longer outings. Just fill it up with warm water, and after a bowel movement or even urinating, just spray yourself down! I’ve found water works the best for getting everything super clean, though baby wipes are a lifesaver when you’re out n’ about.

Now, PAY ATTENTION TO THIS PART!!! I wasn’t given this tip until about a month of living with the seton bands. First of all, go out and get some Calmoseptine ointment. You can order some on Amazon.com (I got a great deal on a bulk purchase), or you can ask your pharmacist to order some–it’s over the counter, but they often don’t carry it in most drug stores. Calmoseptine has helped me so much throughout the entire fistula journey, but was most helpful during the awful seton days. Here is what I did:

1. Put a generous amount of Calmoseptine (in a pinch, Butt Paste in the baby aisle is basically the same thing without the menthol cooling effect) on the area surrounding the protruding band.

2. Take a small layer of gauze (not too thick or it will cause its own chaffing), and fold it around the band that is sticking out.

3. If you can, try to tuck the band back a bit so that it doesn’t move as much when you walk.

I had days where I couldn’t walk because the chaffing of the band caused so much irritation it was too painful to move my lower half. The Calmoseptine combined with the gauze definitely helped a lot. I also recommend you double your sitz bath usage. You can add some lavender essential oil to the warm water to calm the skin, or some witch hazel to ease itching and inflammation (use caution as certain oils and ointments can cause more irritation for people who have sensitivities to them).

Your time with the seton band (or bands in some cases) could be as short as a few weeks, or it could be months. I had mine in for 5 months, and they were probably some of my worst days. Don’t lose hope! The suggestions I’ve made helped me so much, but I didn’t learn them until a month in. If those methods don’t ease the irritation, talk to your doctor. Never be afraid to tell your doctor how much pain or discomfort you’re feeling. It took me a month to speak up, and only then did my doctor suggest Calmoseptine. Unfortunately, most doctors and surgeons do not prepare you or give you all of the tips you need. You have to ask them. Be pushy. Don’t forget that YOU are in charge of your recovery and healing, and THEY work for US.

Be bold, be brave, and keep your head up!

Until next week,

Leah R. Chatterjee

fistulasurvival@gmail.com

Can I Get Kale With That?

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This is my least favorite subject. Diets are the bane of my existence, but let’s face it: When your bottom is in disrepair, what you eat matters. When I first started out on this fistula journey, I read about so many different diets. Since every body is different, every digestive system handles things differently, so in some ways this will be a process of trial and error for you. There are definitely foods to avoid and foods you should go wild on, and that’s what I’ll focus on here.

Foods to Avoid

Let’s get this one over with first, since nobody likes to hear what they can’t or shouldn’t eat. Here is a basic list of foods that will not come out easy:

  • fatty and fried food–they are just really hard on your digestive system, and you should consider cutting back on them if not eliminating them completely.
  • foods that don’t break down: corn, certain nuts, foods with skins (especially post surgery), seeds, etc.
  • foods high in sugar, high fructose corn syrup, sweeteners–these are also hard on the digestive system
  • dairy: consider going light on heavy dairy, especially the week or two after surgery
  • Gluten in moderation–whole grain can be a great source of fiber, but gluten is hard to break down, especially for those who are gluten sensitive (obviously if you have celiac you want to avoid gluten)
  • caffeine, diuretics

See? That wasn’t soooo bad, right? Here comes the fun part…

Foods to Go to Town On

I have had the most success with a high fiber diet. Your doctor will most likely tell you to add a fiber supplement to your diet, and to get lots of fiber naturally. This is mainly because fiber binds water, making your stools softer and moving things through your intestines faster. While natural fiber is the best, it is a good idea to get some Benefiber or Metamucil because it can be difficult to get enough fiber throughout the day. Ideally you want to get at least 25 grams of fiber a day.

Fruits and veggies are where it’s at! My advice is to try to balance your intake from each group (in other words, eat about equal amounts of fruits and veggies). If you get too much fruit you might end up with the runs, and too many vegetables and your stools will get too hard. One of my saviors has been the smoothie. You can mix in your vegetables and fruits and get several servings from each category in one delicious drink.

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Healthy Comfort Food

I think this is really important. There’s no getting around the fact that living with a fistula is unpleasant, painful, often debilitating, and at times downright depressing. In times like these, comfort food is a must. You can, of course, find your own healthy comfort foods, but I wanted to share a short list of foods I found comforting that did not irritate or harm my booty:

  • Baked potatoes! Yes, you probably want to go light on the butter and sour cream, but potatoes go down great, and are the ultimate comfort food
  • Mashed potatoes
  • Mashed sweet potatoes & baked sweet potatoes
  • Mashed cauliflower (surprisingly delicious)
  • Cashews. These were one of the only nuts I had no trouble digesting and passing smoothly.
  • Basmati rice
  • Fruity yogurt
  • Rice crackers and rice cakes (I’m not trying to advertise, but Trader Joe’s makes some really yummy rice crackers, and the Safeway Organics section has some yummy rice crackers)

Those are just a few things that have been comforting to me on rough days. I also really enjoyed my smoothies and snacking on cauliflower, or a bowl of strawberries or raspberries.

Of course there will be times that you just say, “Screw it, I’m splurging,” and you eat some stuff that will probably be rough coming out the other end. Don’t beat yourself up. I’ve done it plenty of times, and while I usually regret it, it didn’t do any real damage. It definitely effects your comfort, though, and ultimately you want to try to put the best possible foods into your body while you’re healing. What you eat will have an effect on your healing, so try to stick to really good stuff. Please try to eat organic when you can. I know it’s more expensive, but so was your surgery, and you want it to HEAL. The fewer chemicals, pesticides, and dyes you ingest the better.

I hope this was helpful! I will touch more on diet in the future, but wanted to get these basics out there for those who have been diagnosed recently!

Next week’s topic is the Seton band!

Leah R. Chatterjee

fistulasurvival@gmail.com

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

 

How to Reach Me

If you have any personal or private (or embarrassing) questions for me, I have set up an e-mail for this topic:

fistulasurvival@gmail.com

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. 

Happy Friday!

Leah R. Chatterjee