by Leah Ruthe Chatterjee
by Leah Ruthe Chatterjee
Hi Fistula Warriors,
Starting this post for my fistula medical illustrations. I’ve come a long way in my drawings since my first, rather crude, advancement flap drawing! It’s pretty hard to find images of surgeries and anatomy that don’t cost a bunch to use, so I’m starting my own collection. You are welcome to share and print any of these for non-profit purposes only, I just ask that you leave my copyright watermark in place. I’ll be adding more over time, so check back for more.
Many of us don’t get proper aftercare instructions after fistula surgery. A friend in my support group shared photos of her aftercare instructions, and they were so good that I had to type them up to share with all of you. I turned them into images so that they can be easily saved and shared from most platforms. Please feel free to save and share them!
Please note that these instructions aren’t perfect, just the best I have seen so far, and they won’t apply to everyone. If you are unsure about your aftercare, I urge you to call your surgeon’s office to have them answer any questions.
(All of this information comes from a handout by Alberta Health Services)
Instrucciones de descarga despuès de la cirugìa anal
(Informacion crèdito a Alberta Health Services)
Cuidandando tu àrea anal
1. Toma un baño de asiento tres o cuatro veces al dìa. Limpia la bañera antes y despuès de su baño. No use aceites, baños de burbujas, lociones, o polvos en su àrea anal.
2. Es possible que tenga una secreciòn amarilla en sù àrea anal. Es posible que tambièn tenga sangre en la zona, especialmente despuès de movimientos intestinales.
3. No demore la evacuaciòn intestinal. Vacìa tus intestinos pronto cuando sientes la necesidad. No te sientes en el baño por mucho tiempo. Siempre toma un baño de asiento despuès de la ecvacuaciòn intestinal. Trata de no aser tension ni estreñirte.
4. Use una compresa frìa en la àrea anal para ayudar con el dolor.
5. NO se siente en una almohada en forma de rosquillas. Presionan sobrè la àrea que esta sanando.
Instrucciones de descarga despuès de la cirugìa anal
(Informacion crèdito a Alberta Health Services)
Llama a su cirujano si tienes:
* Escalofrìos o fiebre (temperatura sobre 38.5° C o 101.3° F)
* Estreñimiento que no mejora
* Dolor que no mejora con medicamentos
* Cuàgulos de sangre viniendo de la àrea anal
* Drenaje de la zona anal que huele mal
* Sangrando abudante (remojando una almohadilla gruesa en menos de una hora)
* Problemas pasando la orina
** llama 911 si tienes dolor repentino en el pecho o dificultad para respirar**
Informaciòn de seguimiento para la cirugìa anal
Procedencia: Alberta Health Services
Movimiento intesinales despues de su cirugìa
Cuando tù lleges a casa
Cuando llamar a su cirujano
2. The surgeon will then flush out the contents of the now-open tract, and flatten it out.
3. Finally, the surgeon will sew the skin edges of the tract to keep it flat, and ideally the fistula will heal over the course of a month or two into a flat scar.
One of the most common surgeries available to close a fistula is called the advancement flap surgery. If you have a colorectal fistula, there is a good chance you will hear about this option somewhere down the line. I’ve sketched my own depiction of the surgery here:
What you are looking at is the fistula from the inside of the rectum. Simply put, the surgeon will cut a piece (or flap) of tissue near the fistula hole, and stretch it over the hole like a patch. Sutures are used to keep it in place.
Here are several questions you might want to ask your doctor before you decide to have the surgery:
1) What is the state of my tissue in that area? Is it in good shape for surgery? As we get older our tissue can weaken. If you have had multiple surgeries in that area, the tissue might not be in the best shape. Your doctor should know whether or not the tissue is good enough for a strong flap, but asking is always a good idea.
2) Am I clear of all infections? Any kind of infection can compromise healing. If you feel something might be “off,” have frequent diarrhea, or stomach cramps, ask your doctor to run some tests and stool samples. You know best what your body feels like when it’s healthy, so don’t be afraid to insist on lab work before going in for surgery.
3) What can I do after surgery to help the healing process? Ask your doctor about how to properly take your antibiotics and pain medications. Ask about what foods to eat, and what foods to avoid. It is very important to eat well after this surgery, and to be conscious of eating foods that will pass through the rectum easily.
4) How can I best manage my pain and physical discomfort after surgery? Every person is different, has different levels of pain, and different reactions to pain. This surgery can take time to recover fully from, and there will be at least a few days of serious discomfort and/or pain. It is important to prepare for this beforehand.
5) How should I keep the area clean? After surgery the area will be tender, there will be some bleeding, and keeping the area as clean as you can is important. (In this seton band article I give tips on keeping things clean)
According to most literature currently available, the advancement flap surgery has a success rate of about 70%. Many studies reported causes of failure were often due to the presence of Crohn’s Disease. I would advise that you not get too caught up in numbers. Do your research, talk to your doctor about concerns (don’t be embarrassed, colorectal surgeons have heard it ALL), and get a second opinion if necessary.
Best of luck to all of you on the fistula journey. As always, feel free to contact me with questions or comments. I will do my best to get back to you in a timely manner. Please remember that I am NOT a doctor, just someone who has lived through a 3 year fistula, and has accrued what I hope to be valuable knowledge and experience on the subject.
Leah R. Chatterjee
I have been thinking about how to write this for a while now. How does one write an entry about quitting smoking without the BS shaming, the guilt-tripping, the clichés and facts that everybody already knows?
Before the Fistula of Doom descended on my life like a gloomy fog of despair, I was a very heavy smoker. I’m talking 1 to 1.5 packs a day heavy smoker. In fact, one of my greatest fears was that I would never be able to quit. I had tried unsuccessfully countless times to stop the nasty habit. Unfortunately, I loved smoking. I loved every part of smoking (okay, not the smell), and over the years I had come to rely on it as a coping mechanism for pretty much everything. When I first got the fistula I started smoking even more to deal with the pain and distract myself from the poo leaking out of the tunnel. My doctor encouraged me to quit, citing all of the obvious reasons that smoking was impairing my healing process.
I already knew, as most smokers do, the risks involved in smoking. Even after reading about how bad smoking is for your intestinal system, how it slows almost all healing processes, how it is especially bad for people with Irritable Bowel Disease, I still did not quit. I thought about it a lot, but it just didn’t feel urgent.
Fast forward to a year later, and something changed. I got scared. Really scared. I had a rubber band (seton band) hanging out of my ass, was still leaking poo, still rocking the Depends and copious amounts of gauze. The awful red donut was still my major accessory.
I was terrified that I would never heal. To top it all off I got a c diff infection (please see my earlier blog on C. difficile), and was not having success in getting rid of the persistent disease. I finally told my therapist, “I will do anything to get better. That includes quitting smoking. Please, help me stop.” I really meant it, but was nervous, skeptical of my own will power. With the help of my therapist, I worked out a plan to taper off of them…VERY SLOWLY. I cut back by one cigarette a day until I was down to 3 a day, then cut back one a week, until I was finally down to just chewing gum (I eventually quit that, too, after a year of gum chewing). It was one of the hardest things I have ever done in my life. It was a painful, messy, grumpy, tearful affair, but I did it. All because of my deep desire to get better.
I’m sharing this, not to give myself accolades for my achievement, but to let you know from one smoker to possibly another that it is possible. I am not joking when I say that there was a point in my life where I did not think I was capable of quitting. I thought surely it would be what killed me. The truth is that smoking wreaks havoc on your entire system, not least of which is your circulatory system and your digestive system. If your fistula experience is anything like mine was (don’t worry, plenty of fistulas are not as wretched as mine was), you are looking at possibly several years of multiple surgeries. You want to be as kind to your intestines and colon as you possibly can (trust me when I say that you will suddenly be more concerned about what you put in in relation to how painful it is coming out). I absolutely have to say this obnoxious line:
You really ought to quit.
Making the decision is easy enough. I recommend seeking out some kind of support if you know you are going to have a hard time. Checking in with my therapist weekly was a huge help, and the one thing I did different when I finally managed to quit. I had someone to hold me accountable, and even on weeks that I messed up it was good to have someone reminding me that it’s okay to screw up. If therapy is not an option for you, there are a lot of online and in person support groups that are free. I highly recommend the tapering off method, especially if you are a heavy smoker like I was.
As usual, I recommend looking into natural remedies to ease the anxiety of quitting, such as flower essences (Bach Flower Remedies are good and fairly affordable, and their website has pretty great explanations of what each essence is good for), meditation, exercise, breathing exercises, etc. I definitely used Nicorette for the first 8 months, but when I quit the gum it was the natural stuff that kept me from going backwards.
Three years later I can tell you that the rumors are true: you do feel a hell of a lot better after you quit. Every body is different, but mine felt a significant difference after 6 months. One year later I could really breathe. You know, big, deep, full breaths that you forget you’re capable of. Truth? I still get cravings sometimes. It’s so much easier to write them off now, though, and I don’t miss being a smoker one bit. Good luck!
Leah R. Chatterjee
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:
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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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.
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.
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.
One 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:
Gating 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. 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.
Another 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):
I also noticed that Omega 3 (I specifically used Omega3 Joy brand, but there are plenty of great 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, which 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 firstname.lastname@example.org 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
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:
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:
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
Just kidding, kale is actually kind of tough to pass through after colorectal surgery.
I have started a new support group for this subject, so if you’re looking for a place to discuss nutrition and diet while coping with a fistula, head over to Facebook and join our Fistulas & Food Support Group!
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:
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.
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:
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