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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Just kidding, kale is actually kind of tough to pass through after colorectal surgery.

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, seeds, 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 a large protein that 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. Cooking many of the veggies will make them easier to break down if you’re having trouble with raw.

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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)
  • Basmati rice
  • Fruity yogurt (if you are not lactose intolerant, yogurt is often one of the few forms of dairy that is okay)
  • Rice crackers and rice cakes 

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

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