I’ve heard a lot of horror stories – some online, some from talking to others and, unfortunately, my story would qualify as a horror story as well. One overarching theme is the sheer lack of information surgeons and doctors give people who have fistulas. Why this is (lack of knowledge on their part? Not understanding how important it is to let their patients know as much as possible about this issue?) I don’t know.
Here’s a haphazard list of some things you might want to know that you may not have learned from your medical professional.
-When we think of pus, we tend to think of a discharge with a creamy whitish colour, but fistula pus can be much more colourful. It can be creamy white, greenish or brown and the colour can vary from day to day.
-If your fistula leaks pus, the amount can vary from one day to the next.
-The skin around your fistula may change colours depending on the day/how much pressure you've put on it etc. Some days the skin around my fistula looked more pink, some days more red. I've heard from people saying their skin around theirs looked purple some days.
-If your fistula formed because of an incision and drainage procedure like mine, you may experience watching the hole close over by filling up with granulation tissue. This was incredibly distressing for me as mine got infected due to poor aftercare instructions and the tissue then turned into hyper granulation tissue. I've learned that wounds heal by a very specific process and a lot of factors can interrupt the process - factors such as pressure on the wound, too much bacteria in the wound, too much moisture, and foreign bodies (aka poop in my case) running over or through the wound as well as the wound getting pulled on excessively.
-Certain foods can clog your fistula. For me, I found out the hard way that pineapple, strawberries, and corn are no-nos. I’ve not been adventurous enough to try eating popcorn *shudders with fear*.
-Sex life...what sex life? Having a fistula definitely can put a damper on things. Leaking poop is such a societal taboo that it can affect how you view yourself on a sexual level (and thus lower your sex drive) and it can affect how you view yourself as a human being.
-Sex shouldn’t make your fistula worse. Depending on the location, don’t avoid sex (if you’re feeling up for it) for fear that all that moving around will make your fistula bigger. It shouldn’t. Mind you if you have a recto-vaginal fistula you’re best off seeking advice from your health care provider.
-Get yourself a good colorectal surgeon, NOT a general practitioner, a gynecologist or a general surgeon. This applies to us unlucky folk who have a high complicated fistula, I think. If your fistula isn’t complicated, you will likely be able to have a fistulotomy and this surgery in this instance tends to have a high success rate and a low recurrence rate. If you’re fistula is complicated? Don’t settle for anything other than the BEST colorectal surgeon you can find. Too much can go wrong otherwise.
-Complicated fistulas tend to be treated by surgeries in North America that have a high recurrence rate and a high failure rate. I believe this is in part because North American doctors tend to want to do as many surgical procedures as they can as a day procedure. In my experience, it's - you get surgery, you get sent home with little to no aftercare instructions and you see your surgeon in 6 weeks or so. I think these surgeries would have a far better chance of succeeding if patients were able to be more closely monitored (once a week for example) by their doctors.
-Make sure to disinfect your sitz bath water - especially if you've just undergone an incision and drainage procedure. Don't just sit in warm tap water as my former surgeon advised me to do, you will be susceptible to anything that is in that water! Instead, boil all of your sitz bath water. You can boil it the day before, wait for it to cool and put this water into a jug. You can also help sterilize the water and the area by using various essential oils (I chose to use lavender and tea tree oil) and Epsom salts.
-Wash your sitz bath every day. I wash mine with hot water and dish detergent.
-Having multiple sitz baths a day can cause yeast infections in women.
-If you are a woman, make sure to pee after every sitz bath to minimize your risk of getting a urinary tract infection.
-Use organic products whenever possible. When I was using cotton pads to absorb the pus drainage, I made sure that those pads were made from organic cotton.
-Your pus may smell sulfuric. Mine did after I underwent an incision and drainage procedure. It was also brown (I thought it was poop when I first saw it).
-In Canada, we tend to deify doctors, but never forget that they are human too. They make mistakes. If they aren't familiar with your issue, they will use a lot of guess work. I've learned that in some cases, medicine is more of an art than a science.
-If a doctor speculates about why you got an abscess (for example, could it have been caused by Crohn's disease), try not to freak out and realize that it's just that - speculation. Doctors really shouldn't speculate like that in front of patients as it can cause a lot of undue stress, depression and anxiety, but, as I mentioned above, they are human too and make mistakes. Unless a doctor has test results in front of them that will either diagnose you with a disease or illness, or rule it out, then anything they have to tell you is just a guess.
-The pain and discomfort of your fistula will vary from day to day. Some days will be easier than others.
-No one cares more about your health than you. Make sure to be your own best health advocate. Educate yourself as much as you can on abscesses/fistulas. Read medical websites. Read medical journals. Talk to others who have gone through this hell. Research, research research. Familiarize yourself with all of the surgical options available to you and go with your gut - choose the path that makes most sense to you. For example I've heard from some people who chose to keep their draining seton in instead of undergoing more and more surgery. Do. What. Makes. Sense. For. You. And try not to fall into the trap of thinking 'doctor knows best' if what they are telling you doesn't make sense or doesn't feel right.
-You're going to become verrry familiar with poop. How irritating it is when it sits on your skin. How often you have BM's. Everything. Make sure to keep an eye on your stools. How much is there? How hard/soft are they? Are they formed? Mushy? Etc etc. You can even refer to the Bristol Stool Chart to learn more. The best indicator of your colonic health is what your stools look like.
-If you are open about your illness, you may find that others open up about their struggles as well.
-If you are like me and love to research and learn, and take pains to learn about the GI system, the people around you may come to see you as some sort of expert. It's incredible how many people don't' really know anything about the GI system.
-Not everyone is safe to talk to about this sensitive issue. I learned this the hard way when a well meaning friend asked me about this issue and when I told her the hardest part for me was dealing with clean up and she told me basically that that was gross and she didn't want to hear about it. Don't be afraid to tell who you want about your issue and keep it from who you want. Also don't be afraid to stop talking about the issue or answering questions with someone you'd previously spoken to if you find that they are rude or insensitive.
-If your fistula leaks a lot of pus, you may get dreaded 'swamp ass' (where your bum is constantly uncomfortably wet) and you may develop diaper rash. A barrier cream such as diaper rash cream and airing the area as much as possible helps.
-You will probably be tested for Crohn's disease. I've had multiple biopsies, a CT enterography, an MRI, a colonoscopy and a rigid sigmoidoscopy. These tests sound scary but none of them are nearly as bad as dealing with a rectal abscess. You will survive!
-If you're Canadian, it may take a long, lonnng wait time to have these tests.
-Herbal remedies can help alleviate discomfort. I now take a strong probiotic and Omega 3 pills to help with my colonic health, I also drink Chaga tea and take turmeric to help boost my immune system (there is evidence out there that Chaga tea can help with Crohn's disease as well).
-Fistulas rarely close on their own. If you want it gone you will have to undergo some sort of procedure.
-Most North American surgical options suck. I will discuss them later in more detail, but the standards are: Fistulotomy or fistulectomy for non-complicated fistulas, draining setons or comfort setons to help get the infection under control, cutting/tightening setons, VAAFT, LIFT, and Advance Flap surgeries to close the fistula.
-A procedure called Kshar Sutra is popular in India, but many medical professionals in North America have never heard of it.
-Just because your doctor hasn't heard of a procedure (for ex Kshar Sutra) doesn't mean it's not a viable option.
-If you have a surgery that fails, it could make your situation worse.
-What surgery you are offered depends on your doctor and where you live. For example VAAFT is offered in Australia but I don't think it's offered in Canada.
-Fistulas that are left untreated can get worse and/or longer.
-If you choose a North American surgical option for a complicated fistula, ask for wound vac!
-Fistulas can fistulize or splinter off (kind of like when you break glass and multiple cracks branch out from a main crack). Those 'splinters' can either make an external opening or form a 'blind sinus' which is a fistula that doesn't have an end that makes an external opening and blind sinuses can form new abscesses since pus has nowhere to go.
-Having a fistula can affect your entire body image. When I went to therapy to deal with the depression and anxiety I was experiencing around this issue, she compared it to when women lose a breast due to breast cancer. We do tend to wrap a lot of our identities in how we look and how our bodies function. When something goes wrong with our bodies, it effects how we feel about ourselves.
-Depression and anxiety can become crippling. I'd recommend visiting a good counselor to help you navigate through this issue. I also chose to smoke medical marijuana which is good for depression and anxiety.
-Don't be afraid to lean on loved ones. If they are truly there for you and love you, they will help hold you up in this most trying time.
-Above all never give up. This trial will not last forever.
I suffered with a high complicated front facing anal fistula that went through both sphincter muscles for 8 months before deciding to travel to Pune India to have Kshar Sutra treatment with Dr. Bapat. If you are curious about Kshar Sutra treatment, have had Kshar Sutra treatment and would like to share your experience, or are undergoing Kshar Sutra, please request to join my closed, confidential Kshar Sutra support group on Facebook Please note - everything stated is my personal opinion. I do not advise going against the advice of your doctor. I am not a medical professional. Kshar Sutra treatment is only legal to practice in India. People choosing to travel to India to undergo Kshar Sutra treatment do so at their own risk.
Here’s a haphazard list of some things you might want to know that you may not have learned from your medical professional.
-When we think of pus, we tend to think of a discharge with a creamy whitish colour, but fistula pus can be much more colourful. It can be creamy white, greenish or brown and the colour can vary from day to day.
-If your fistula leaks pus, the amount can vary from one day to the next.
-The skin around your fistula may change colours depending on the day/how much pressure you've put on it etc. Some days the skin around my fistula looked more pink, some days more red. I've heard from people saying their skin around theirs looked purple some days.
-If your fistula formed because of an incision and drainage procedure like mine, you may experience watching the hole close over by filling up with granulation tissue. This was incredibly distressing for me as mine got infected due to poor aftercare instructions and the tissue then turned into hyper granulation tissue. I've learned that wounds heal by a very specific process and a lot of factors can interrupt the process - factors such as pressure on the wound, too much bacteria in the wound, too much moisture, and foreign bodies (aka poop in my case) running over or through the wound as well as the wound getting pulled on excessively.
-Certain foods can clog your fistula. For me, I found out the hard way that pineapple, strawberries, and corn are no-nos. I’ve not been adventurous enough to try eating popcorn *shudders with fear*.
-Sex life...what sex life? Having a fistula definitely can put a damper on things. Leaking poop is such a societal taboo that it can affect how you view yourself on a sexual level (and thus lower your sex drive) and it can affect how you view yourself as a human being.
-Sex shouldn’t make your fistula worse. Depending on the location, don’t avoid sex (if you’re feeling up for it) for fear that all that moving around will make your fistula bigger. It shouldn’t. Mind you if you have a recto-vaginal fistula you’re best off seeking advice from your health care provider.
-Get yourself a good colorectal surgeon, NOT a general practitioner, a gynecologist or a general surgeon. This applies to us unlucky folk who have a high complicated fistula, I think. If your fistula isn’t complicated, you will likely be able to have a fistulotomy and this surgery in this instance tends to have a high success rate and a low recurrence rate. If you’re fistula is complicated? Don’t settle for anything other than the BEST colorectal surgeon you can find. Too much can go wrong otherwise.
-Complicated fistulas tend to be treated by surgeries in North America that have a high recurrence rate and a high failure rate. I believe this is in part because North American doctors tend to want to do as many surgical procedures as they can as a day procedure. In my experience, it's - you get surgery, you get sent home with little to no aftercare instructions and you see your surgeon in 6 weeks or so. I think these surgeries would have a far better chance of succeeding if patients were able to be more closely monitored (once a week for example) by their doctors.
-Make sure to disinfect your sitz bath water - especially if you've just undergone an incision and drainage procedure. Don't just sit in warm tap water as my former surgeon advised me to do, you will be susceptible to anything that is in that water! Instead, boil all of your sitz bath water. You can boil it the day before, wait for it to cool and put this water into a jug. You can also help sterilize the water and the area by using various essential oils (I chose to use lavender and tea tree oil) and Epsom salts.
-Wash your sitz bath every day. I wash mine with hot water and dish detergent.
-Having multiple sitz baths a day can cause yeast infections in women.
-If you are a woman, make sure to pee after every sitz bath to minimize your risk of getting a urinary tract infection.
-Use organic products whenever possible. When I was using cotton pads to absorb the pus drainage, I made sure that those pads were made from organic cotton.
-Your pus may smell sulfuric. Mine did after I underwent an incision and drainage procedure. It was also brown (I thought it was poop when I first saw it).
-In Canada, we tend to deify doctors, but never forget that they are human too. They make mistakes. If they aren't familiar with your issue, they will use a lot of guess work. I've learned that in some cases, medicine is more of an art than a science.
-If a doctor speculates about why you got an abscess (for example, could it have been caused by Crohn's disease), try not to freak out and realize that it's just that - speculation. Doctors really shouldn't speculate like that in front of patients as it can cause a lot of undue stress, depression and anxiety, but, as I mentioned above, they are human too and make mistakes. Unless a doctor has test results in front of them that will either diagnose you with a disease or illness, or rule it out, then anything they have to tell you is just a guess.
-The pain and discomfort of your fistula will vary from day to day. Some days will be easier than others.
-No one cares more about your health than you. Make sure to be your own best health advocate. Educate yourself as much as you can on abscesses/fistulas. Read medical websites. Read medical journals. Talk to others who have gone through this hell. Research, research research. Familiarize yourself with all of the surgical options available to you and go with your gut - choose the path that makes most sense to you. For example I've heard from some people who chose to keep their draining seton in instead of undergoing more and more surgery. Do. What. Makes. Sense. For. You. And try not to fall into the trap of thinking 'doctor knows best' if what they are telling you doesn't make sense or doesn't feel right.
-You're going to become verrry familiar with poop. How irritating it is when it sits on your skin. How often you have BM's. Everything. Make sure to keep an eye on your stools. How much is there? How hard/soft are they? Are they formed? Mushy? Etc etc. You can even refer to the Bristol Stool Chart to learn more. The best indicator of your colonic health is what your stools look like.
-If you are open about your illness, you may find that others open up about their struggles as well.
-If you are like me and love to research and learn, and take pains to learn about the GI system, the people around you may come to see you as some sort of expert. It's incredible how many people don't' really know anything about the GI system.
-Not everyone is safe to talk to about this sensitive issue. I learned this the hard way when a well meaning friend asked me about this issue and when I told her the hardest part for me was dealing with clean up and she told me basically that that was gross and she didn't want to hear about it. Don't be afraid to tell who you want about your issue and keep it from who you want. Also don't be afraid to stop talking about the issue or answering questions with someone you'd previously spoken to if you find that they are rude or insensitive.
-If your fistula leaks a lot of pus, you may get dreaded 'swamp ass' (where your bum is constantly uncomfortably wet) and you may develop diaper rash. A barrier cream such as diaper rash cream and airing the area as much as possible helps.
-You will probably be tested for Crohn's disease. I've had multiple biopsies, a CT enterography, an MRI, a colonoscopy and a rigid sigmoidoscopy. These tests sound scary but none of them are nearly as bad as dealing with a rectal abscess. You will survive!
-If you're Canadian, it may take a long, lonnng wait time to have these tests.
-Herbal remedies can help alleviate discomfort. I now take a strong probiotic and Omega 3 pills to help with my colonic health, I also drink Chaga tea and take turmeric to help boost my immune system (there is evidence out there that Chaga tea can help with Crohn's disease as well).
-Fistulas rarely close on their own. If you want it gone you will have to undergo some sort of procedure.
-Most North American surgical options suck. I will discuss them later in more detail, but the standards are: Fistulotomy or fistulectomy for non-complicated fistulas, draining setons or comfort setons to help get the infection under control, cutting/tightening setons, VAAFT, LIFT, and Advance Flap surgeries to close the fistula.
-A procedure called Kshar Sutra is popular in India, but many medical professionals in North America have never heard of it.
-Just because your doctor hasn't heard of a procedure (for ex Kshar Sutra) doesn't mean it's not a viable option.
-If you have a surgery that fails, it could make your situation worse.
-What surgery you are offered depends on your doctor and where you live. For example VAAFT is offered in Australia but I don't think it's offered in Canada.
-Fistulas that are left untreated can get worse and/or longer.
-If you choose a North American surgical option for a complicated fistula, ask for wound vac!
-Fistulas can fistulize or splinter off (kind of like when you break glass and multiple cracks branch out from a main crack). Those 'splinters' can either make an external opening or form a 'blind sinus' which is a fistula that doesn't have an end that makes an external opening and blind sinuses can form new abscesses since pus has nowhere to go.
-Having a fistula can affect your entire body image. When I went to therapy to deal with the depression and anxiety I was experiencing around this issue, she compared it to when women lose a breast due to breast cancer. We do tend to wrap a lot of our identities in how we look and how our bodies function. When something goes wrong with our bodies, it effects how we feel about ourselves.
-Depression and anxiety can become crippling. I'd recommend visiting a good counselor to help you navigate through this issue. I also chose to smoke medical marijuana which is good for depression and anxiety.
-Don't be afraid to lean on loved ones. If they are truly there for you and love you, they will help hold you up in this most trying time.
-Above all never give up. This trial will not last forever.
I suffered with a high complicated front facing anal fistula that went through both sphincter muscles for 8 months before deciding to travel to Pune India to have Kshar Sutra treatment with Dr. Bapat. If you are curious about Kshar Sutra treatment, have had Kshar Sutra treatment and would like to share your experience, or are undergoing Kshar Sutra, please request to join my closed, confidential Kshar Sutra support group on Facebook Please note - everything stated is my personal opinion. I do not advise going against the advice of your doctor. I am not a medical professional. Kshar Sutra treatment is only legal to practice in India. People choosing to travel to India to undergo Kshar Sutra treatment do so at their own risk.
Nice read, thank you. I have a comfort seton that is there permanently as none of the surgical options are a safe risk for me. I have granulation tissue that I burn off with silver nitrate every few weeks.
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