If you are curious as to what happened to me and would like to offer some understanding, support, and encouragement during my attempt to find myself again, then you may proceed.
This post, actually, is for me (and for others newly diagnosed who need some help making sense of WTF is happening). My blog. My journal. My body. I write about the good. I will write about the bad too.
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Why am I sharing all this personal stuff? First, because I train a lot of athletes who are wondering what the heck happened to their coach. I care about my runners and I want them to know what is happening to me. I want to be a role model of perseverance and I want to show them that when I tell them to never give up on themselves, I also practice what I preach.
Second, I am really sharing it publically because for the last three weeks all I have seen are horror stories. There seems to be no hope for people in my situation, just problem-focused misery. I have been desperately seeking examples of people who are managing this condition well. I want to read about people who are living life. I want to see athletes succeeding despite this condition. But I have not found one post, not one comment, no blogs from anyone who racing marathons or playing sports competitively in my condition. (I am sure they are out there but they just may not want to talk about their asshole). The people who are sharing their stories are the people who have seemed to give up. I don’t want to give up!
If I can’t find a success story, then I want to be that success story. I want people, like me, who are desperate for hope to find my blog. I want them to read about the hard reality that I am facing (this is bad and I can't pretend it isn't). But I want people to also see that I have found my way and they can to. This is not pretty and it is not problem-free, but I am managing it. If I can manage, others can manage.
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What happened? It has been just over 3 weeks since my asshole tried to kill me. Jeez, make one too many self-deprecating jokes about trying to not poop your pants on a long run and the universe decides to blow up your anus. Not cool. I didn’t even know this was a thing.
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For those people hate "vague-booking" here you go. Careful what you wish for! On 12/4, I was rushed into emergency surgery because a crypt gland several inches inside my anal canal became very infected. Why? No reason. The gland, whose job is to lubricate the anal canal malfunctioned. It became impacted or maybe succumbed to bacteria. This type of infection is most often linked to Crohn's disease, Ulcerative Colitis, Diverticulitis, Diabetes, Obesity, etc… none of which I have. I have Bad Luck. Sometimes Really Bad Luck.
For those people hate "vague-booking" here you go. Careful what you wish for! On 12/4, I was rushed into emergency surgery because a crypt gland several inches inside my anal canal became very infected. Why? No reason. The gland, whose job is to lubricate the anal canal malfunctioned. It became impacted or maybe succumbed to bacteria. This type of infection is most often linked to Crohn's disease, Ulcerative Colitis, Diverticulitis, Diabetes, Obesity, etc… none of which I have. I have Bad Luck. Sometimes Really Bad Luck.
The mounting pressure from the pus needed a place to go. Rather than take the path of least resistance and discharge through my anal canal, the raging river of infection decided to go on a seek-and-destroy mission to find a new exit out of my body through my left butt cheek. On its way, it bore a tunnel through my both my voluntary and involuntary sphincter muscles. This tunnel is called a Fistula.
On its way out, my river of infection decided to divide and conquer splitting into two branches to make what is called a horseshoe fistula. This is bad. My fistula never actually busted through the surface of my skin but rather created two huge pockets of infection, one inside my body and the other near the surface of my left butt cheek. When sitting, could feel a large hard mass in my butt cheek. After many days of this (it took two visits to get this diagnosed correctly), I became septic. A few moments into my second doctors visit, my doctor realized that I was septic and ran from the exam room to book an Operating Room ASAP! I had surgery a few hours later.
Here is a short cartoon that shows what happened (there is no sound): https://www.youtube.com/watch?v=aA0wqcoeI_g******
When I woke up from surgery, I was not prepared. I was told I have a very large complex fistula that was incredibly infected and it passed through both my sphincter muscles. This meant it could not be repaired. Instead, my surgeon inserted two seton drains and a larger tube drain. The setons will stay in place for 4 months. The tube was removed 10 days after surgery.
The setons look like large blue rubber bands that are threaded through the fistula tunnel and looped out my anus and then tied and sutured in a knot outside of my body. Not comfy.
The setons keep the fistula tract open so that the infection can continue to drain as needed for months. The setons help “mature” the fistulas by irritating the tunnel causing scar tissue to form inside the walls of the tunnel.
The third tube-like drain was inserted to keep the large fistula exit hole the surgeon cut into my butt cheek open so that it could continue to drain the infection and so I would not have to repack the wound each day. The doc stuffed a huge wad of gauze packing inside the tunnel during surgery. I got to pull that all out 24 hours later. I needed to wait 48 hours before trying to walk. I was told to wait a week before trying to do any exercise. And I was told to wait 2 weeks before lifting anything heavy.
The setons stay for 4 months to provide an escape route for any new infections that will (likely) form in the future.
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Then I went home. And cried. A lot. For three days.
WTF just happened to me? Here is an excellent video that very clearly explains the different types of fistulas and the different types of treatment. https://www.youtube.com/watch?v=LM4qGZ88McM Mine is one of the complex types. I do nothing half-assed. #OverAchiever.
First please know that any type of anal fistula is incredibly rare and they all suck. The majority of those who have fistulas have a “simple” fistula. These are very close to the anus and do not cross any muscle. These simple fistulas are easy (but very painful) to fix with one surgery that “lays open” the track by cutting through the skin, opening the tunnel, sewing it open to lay it flat. It heals slowly and painfully over time. Without muscle involvement, there is no risk of losing one’s ability to control bowel movements.
A minority of people with fistulas will experience “complex” fistulas. These are the type that have burrowed through one or both sphincter muscles, which control our continence. We have two sphincters, a voluntary and involuntary sphincter. Once these muscles are cut too deeply (like during surgery), they will stop working forever. However, the fistula doesn’t damage them enough to impact bowel control. Surgical intervention will leave a person incontinent if too much muscle is cut.
The first type of complex fistula is called an intra-sphincter fistula. It crosses through only the internal involuntary sphincter but does not touch the voluntary sphincter. There is some hope for bowel control. If this type of fistula involves less than 30% of the one sphincter muscle, this fistula may also be “laid open” as well with low risk of incontinence since most of the sphincter muscles will not be cut.
The second type of complex fistula is called a trans-sphincter fistula, which crosses through both the voluntary and involuntary sphincters. Surgery to repair trans-sphincter fistulas are more likely to fail and more likely to leave a person incontinent because both sphincter muscles are involved. This is my type.
The only thing that can make a trans-sphincter fistula more challenging to treat is the presence of multiple or horse-shoe tracts. This means the fistula split and took more than one route and is now longer than those that took more direct routes. The longer the fistula the harder it is to close. The more tracts, the harder to treat.
What do I have: A complex, high, horseshoe-shaped, trans-sphincter fistula. This is not going to be an easy fix.
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What is next: Complete Cure vs Colostomy Bag? Only time will tell.
Because the sphincter muscles cannot be cut, the seton drains are put in place and they remain for months. As I explained, this is supposed to scar the walls of the fistula tract to seal closed the inside and lower the risk of re-infection along the tunnel. However, this tunnel is directly connected to the inside of my anal canal. Anal canals are not germ-free places. Infections of fistula are to be expected while the seton is in place because fecal matter can still get in the fistula opening from the inside and there is nothing I can do to stop it. This is bad news.
At the present time, I can do what I need to do to keep the outside of my body clean and healthy. This means I take Sitz Baths every single time I use the bathroom at home. I try to not use the bathroom when not at home. I need to keep my new extra butt cheek hole covered with clean gauze since it drains (not a lot) all day and night. I get to wear menstrual pads every single day now to catch any drainage. This is fun. I feel bad for men with this condition.
In about 3-3.5 months from now, my surgeon plans to attempt to close the internal hole from the inside. There are a handful of methods, all with not very good odds. Some options are to pull a flap of skin over the opening from the inside, but that usually fails as the flap pops off. Another method is to try to stitch the tunnel closed, which also tends to fail. Some doctors tried to create plugs, but those pop out. Some doctors try to use glue to fill the fistula, but that is not very effective. There are some promising results with laser cauterization, but this is still considered experimental and not available to the public unless you live in the UK. Some go to India for some special magical thread treatment that is not approved here in the US. Some have the seton drain rigged to be a "cutting-seton" and it is pulled tighter and tighter overtime to cut through the muscle slowly, but that has problems too. Some people do decide to leave the loose seton drains in for life. But over time, a risk of anal cancer can possibly increase because the drains are foreign bodies that are constantly being rejected.
(Edit: When asked for research to support this of increased risk of anal cancer from long term use of draining, I cannot immediately find the resource at this time so I am adding this note for now to say this is not a common concern and many people do choose to leave setons in a long time, rather than undergo surgery. There is NOT strong evidence that long-term use of setons increases the risk of eventually developing anal cancer. Balancing risks is important. As a cancer survivor, I am more worried about cancer recurrence than others may be so this detail struck me as relevant for my personal journey.)
Then I went home. And cried. A lot. For three days.
WTF just happened to me? Here is an excellent video that very clearly explains the different types of fistulas and the different types of treatment. https://www.youtube.com/watch?v=LM4qGZ88McM Mine is one of the complex types. I do nothing half-assed. #OverAchiever.
First please know that any type of anal fistula is incredibly rare and they all suck. The majority of those who have fistulas have a “simple” fistula. These are very close to the anus and do not cross any muscle. These simple fistulas are easy (but very painful) to fix with one surgery that “lays open” the track by cutting through the skin, opening the tunnel, sewing it open to lay it flat. It heals slowly and painfully over time. Without muscle involvement, there is no risk of losing one’s ability to control bowel movements.
A minority of people with fistulas will experience “complex” fistulas. These are the type that have burrowed through one or both sphincter muscles, which control our continence. We have two sphincters, a voluntary and involuntary sphincter. Once these muscles are cut too deeply (like during surgery), they will stop working forever. However, the fistula doesn’t damage them enough to impact bowel control. Surgical intervention will leave a person incontinent if too much muscle is cut.
The first type of complex fistula is called an intra-sphincter fistula. It crosses through only the internal involuntary sphincter but does not touch the voluntary sphincter. There is some hope for bowel control. If this type of fistula involves less than 30% of the one sphincter muscle, this fistula may also be “laid open” as well with low risk of incontinence since most of the sphincter muscles will not be cut.
The second type of complex fistula is called a trans-sphincter fistula, which crosses through both the voluntary and involuntary sphincters. Surgery to repair trans-sphincter fistulas are more likely to fail and more likely to leave a person incontinent because both sphincter muscles are involved. This is my type.
The only thing that can make a trans-sphincter fistula more challenging to treat is the presence of multiple or horse-shoe tracts. This means the fistula split and took more than one route and is now longer than those that took more direct routes. The longer the fistula the harder it is to close. The more tracts, the harder to treat.
What do I have: A complex, high, horseshoe-shaped, trans-sphincter fistula. This is not going to be an easy fix.
*****
What is next: Complete Cure vs Colostomy Bag? Only time will tell.
Because the sphincter muscles cannot be cut, the seton drains are put in place and they remain for months. As I explained, this is supposed to scar the walls of the fistula tract to seal closed the inside and lower the risk of re-infection along the tunnel. However, this tunnel is directly connected to the inside of my anal canal. Anal canals are not germ-free places. Infections of fistula are to be expected while the seton is in place because fecal matter can still get in the fistula opening from the inside and there is nothing I can do to stop it. This is bad news.
At the present time, I can do what I need to do to keep the outside of my body clean and healthy. This means I take Sitz Baths every single time I use the bathroom at home. I try to not use the bathroom when not at home. I need to keep my new extra butt cheek hole covered with clean gauze since it drains (not a lot) all day and night. I get to wear menstrual pads every single day now to catch any drainage. This is fun. I feel bad for men with this condition.
In about 3-3.5 months from now, my surgeon plans to attempt to close the internal hole from the inside. There are a handful of methods, all with not very good odds. Some options are to pull a flap of skin over the opening from the inside, but that usually fails as the flap pops off. Another method is to try to stitch the tunnel closed, which also tends to fail. Some doctors tried to create plugs, but those pop out. Some doctors try to use glue to fill the fistula, but that is not very effective. There are some promising results with laser cauterization, but this is still considered experimental and not available to the public unless you live in the UK. Some go to India for some special magical thread treatment that is not approved here in the US. Some have the seton drain rigged to be a "cutting-seton" and it is pulled tighter and tighter overtime to cut through the muscle slowly, but that has problems too. Some people do decide to leave the loose seton drains in for life. But over time, a risk of anal cancer can possibly increase because the drains are foreign bodies that are constantly being rejected.
(Edit: When asked for research to support this of increased risk of anal cancer from long term use of draining, I cannot immediately find the resource at this time so I am adding this note for now to say this is not a common concern and many people do choose to leave setons in a long time, rather than undergo surgery. There is NOT strong evidence that long-term use of setons increases the risk of eventually developing anal cancer. Balancing risks is important. As a cancer survivor, I am more worried about cancer recurrence than others may be so this detail struck me as relevant for my personal journey.)
Many people have multiple surgeries. Every time a surgical intervention is attempted, there is a risk of damaging the sphincter. The patchwork can fail at any time, days after surgery or months or years later. Reinfection rate for those with complex fistulas is very high, especially once the setons are removed. Multiple attempts to repair the fistula to stop the infections can lead to incontinence. As a result, some patients who are not able to fix the fistula are fitted with a colostomy or ileostomy bag. Usually, by the time someone needs a colostomy bag they seem to actually want it because the battle against repeated infections will finally be over.
Here is a link to some research about how hard it is to close fistulas. The more complex the fistula the lower the success rate for closure. Mine is very complex.
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| When a fistula is horseshoe-shaped the failure rate is closer to 60%. |
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Here is a flowchart that tells me what I can expect. I am in the Draining Seton Stage of the Complex side of this flowchart. I can heal or I won’t. We shall see. What should follow after "Follow-up" if we loop back to recurrence is "Nothing is working, infections persist, colostomy bag needed..."
Here is a flowchart that tells me what I can expect. I am in the Draining Seton Stage of the Complex side of this flowchart. I can heal or I won’t. We shall see. What should follow after "Follow-up" if we loop back to recurrence is "Nothing is working, infections persist, colostomy bag needed..."
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So what is happening to me now?
I am an ultra-runner at heart. Ultra-runners are solution-focused athletes. We endure. We have a high pain tolerance. Meditation taught me focused on the "here and now" and to focus on what I can control. Acceptance is liberating.
At first, I felt like the universe literally ripped my heart and soul out my asshole. I am a runner. I own and operate my own coaching business. My social life revolves around racing. I was a sub-3 marathoner. I ran 43 miles in 6 hours as a 40-year-old woman. Running is where I belong. It is who I am. I have one more class to complete in order to earn my Masters of Science (M.S.) degree in Kinesiology (Science of Human Movement). It was hard to focus on school after this. My entire life revolves around being athletic. I had almost completed 7 years running daily with an average of just under 8 miles per day. That streak ended on 12/4. My soul was crushed. My heart was broken. I took a few days to feel sorry for myself.
Then, I started searching for success stories. I found none. Not one. People shared about needing 15 surgeries over several years. People sounded hopeless. The stories of raging random infections were terrifying. They shared about getting colostomy bags and being grateful to finally be infection free.
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Trying to become a Success Story (at least at Stage 1):
So I decided to try to become my own success story! And for the last 3 weeks, I have figured out how to be myself again. For me, this is a small victory. Just one battle. Not yet the war.
I needed a week before I could run again. So I walked. For the first week of running, I would only run on my treadmill or from my house so I could stop when I needed to. As my runs got longer I had Sidney ride a bike next to me in case I needed to stop. Then I met Kim at a park, but late in the day so I could use my own bathroom. And finally, I met Rich early for 10M and actually had to use the port-o-potty out in the world. And finally, that day, I felt like myself again. Yes the measure of success for me was being able to use a public trail-side port-o-potty. I set the bar high.
But truly this means I can run anywhere and for as far as I want now. I am not limited anymore! At least not for the next 3-3.5 months unless I get an infection (which could happen at any time).
I needed a week before I could run again. So I walked. For the first week of running, I would only run on my treadmill or from my house so I could stop when I needed to. As my runs got longer I had Sidney ride a bike next to me in case I needed to stop. Then I met Kim at a park, but late in the day so I could use my own bathroom. And finally, I met Rich early for 10M and actually had to use the port-o-potty out in the world. And finally, that day, I felt like myself again. Yes the measure of success for me was being able to use a public trail-side port-o-potty. I set the bar high.
But truly this means I can run anywhere and for as far as I want now. I am not limited anymore! At least not for the next 3-3.5 months unless I get an infection (which could happen at any time).
The specific obstacles (TMI, but I don’t care. Others who have this issue may want to know this stuff).
I had to:
(1) To figure out how to manage any chafing from the knots from seton bands (so far this is not a problem but I have not run more than 10.2 miles). I have an arsenal of lube to test when/if needed. Not needed yet and I don't want the lube to mess up the Tegaderm patches which are sticking well now.
(2) To figure out how to get comfortable running with rubber bands irritating my asshole, making me feel like I had to take an urgent shit with every stride…. but I got used to that and the sensation stopped happening. Phew!
(3) To figure out how to run comfortably with gauze padding in my pants and (4) To figure out how to use the bathroom out in the world when I can’t immediately get into a Sitz Bath to make sure the open incision that I will have for months stays clean and dry as well as to make sure the rubber bands hanging out of my ass are clean. Fun stuff.
(1) To figure out how to manage any chafing from the knots from seton bands (so far this is not a problem but I have not run more than 10.2 miles). I have an arsenal of lube to test when/if needed. Not needed yet and I don't want the lube to mess up the Tegaderm patches which are sticking well now.
(2) To figure out how to get comfortable running with rubber bands irritating my asshole, making me feel like I had to take an urgent shit with every stride…. but I got used to that and the sensation stopped happening. Phew!
(3) To figure out how to run comfortably with gauze padding in my pants and (4) To figure out how to use the bathroom out in the world when I can’t immediately get into a Sitz Bath to make sure the open incision that I will have for months stays clean and dry as well as to make sure the rubber bands hanging out of my ass are clean. Fun stuff.
My solution to 3 and 4 above: Tegaderm patches with gauze included. I am so happy to have discovered that I can cover the setons and open incision with a 4x4 inch plastic Tegaderm patches that have a square of gauze in the center. The adherent patch holds down the majority of the seton drains so that I don’t feel them move and they don't chafe me too badly. Sure, I feel them. The gauze collects any drainage completely so I don't need to use a big wad of gauze or menstrual pads when I run. And because the incision site and most of the lenght of setons are covered with plastic, if need to use the bathroom when on a run, some wet wipes are all I need to keep the area and setons completely clean.
Based upon what I had read online from others with setons, running was not supposed to be possible! Reports of pain, chafing, repeated infections from just walking around or being out and about too long made running seem impossible. Not True.
So far I have made it up to 10.2 miles at 9:30 pace without any debilitating chafing or any significant pain. I have also run 5 miles at 8:10 pace, but that was hard and uncomfortable. The irritation level is not enough to stop me from running and I was even able to use the bathroom during my run and nothing bad happened. The Tegaderm stays put for the entire run. Finally, I feel like myself again!
I am in more pain, actual pain, when sitting and when trying to get comfortable to sleep. Running and walking is less painful than being sedentary.
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The Plan: Train for a race, maybe?
I have 3-3.5 more months before my next and first surgery to attempt to close the fistula (See flowchart above. This may be a long journey). My surgeon wants to try the LIFT procedure, where he will try to sew closed the fistula by cutting through my butt cheek, between the two sphincter muscles and stitch the fistula closed. I don't believe I can run for at least a month after that. The LIFT will likely fail. I know this. Then I start over with another infected abscess, get new setons and wait again for the next surgery. Based upon the research, for someone with my specific type of fistula (high, complex, horse-shoe shaped, trans-sphincter), the success rate is 40% (so it is most likely to fail) and the risk of some type of incontinence is 30%. So I am not sure yet this is the surgery I want to do. But most have those same odds.
For now, each day I am infection-free is a day I can train. Each day I can run is a small victory!
My aim now is to find a race to run by the end of March, before I start the next stage of this journey. I may be cured with the first surgery (fingers crossed) or I may end up eventually in a colostomy bag at the worst if nothing works. I really don’t know what will happen.
But what I do know is that today, nothing bad is happening to me. Today I can run.
But what I do know is that today, nothing bad is happening to me. Today I can run.
Today I can dream about running at least one more goal race and maybe some other races just for fun along the way. I want to do what I can to make this time I can run count.
