Seton

When you have a fistula it is likely it will keep producing pus and form one abscess after the other. Draining the abscess is first priority, but what about the fistula? Especially when you have Crohn's, doctor's try to keep you out of the operating room because surgery does more harm than good. With a fistula it's the same. First of all because a fistula is an active infection, secondly because the surgical options are limited. When you have a fistula in ano, it is likely the tunnel tract goes through one or both of your sphincters. Cutting through your sphincter could cause incontinence. So when you're fistula is still active you will probably be treated with medication first to get the infection under control. When this doesn't work enough they will probably suggest to place a seton before taking more extreme meassures such as a fistula surgery, which I will discuss in another post. A fistula surgery is also not a good option when the fistula is still active because it is more likely that the infection will be locked in and eventually cause even more damage.

What is a seton?

A seton is a rubber string/wire/cord that is used for continuously drainage of the fistula. The seton will be placed through the fistula tract and will run in a loop with both ends tight together on the outside of the fistula. Keeping the fistula tract open can help prevent pus and other infections from piling up inside the tract. To place a seton the surgeon must first find the internal opening of the fistula tract. This is where the seton has to run through. The other opening has to be created and will probably be at or nearby the same place where your abscess was drained. 

Two types of seton

There are two types of seton. A loose seton and a cutting seton. The choice between both depends on the placing of the fistula. A low fistula can be treated with a cutting seton. In this case the seton will be tightend every once in a while and will slowly cut out the fistula tract without harming the sphincters. When you have a high fistula this won't work and a loose seton will be placed. Loose doesn't mean that the seton is very loose, it's still tight, but it won't be tightend any further. I've found a very helpfull youtube FILM that explains among other exactly the choice between the two types.

Taking care of the seton

When you have a fistula in ano the seton will run through your butt, through your rectum and will be tight together on the outside near your ano. Because the seton keeps the fistula open, pus can run through all day and night, so you will probably have to use sanitary towels to keep you from leaking. It also makes going to the bathroom a little bit more challenging because of the placing of the seton. Just using toiletpaper isn't enough anymore, you will have to keep it clean by flushing it with water. Either from a bottle or using the shower. When you have a loose seton you also have to make sure to turn it a little from time to time to prevent it from getting stuck. 

For how long?

My surgeon told me my seton would be nescessary for about 3 months. It has now been a year and my seton is still in my butt because the fistula tract is still active. I've read many forums and blogs about people with a seton and the most common comment is that the loose seton is used for a much longer period than first told. My guessing is that it has something to do with the limitation in surgical options, a seton has hardly any side-effects, the severity of a fistula and the recurring rate. Therefore it's much easier to leave a seton in place. But that's just my guessing;)

How does it feel?

I have to be honest, my after surgery pain was quite severe. Maybe also because this was my 5th surgery in the same area. I always have surgery with a spinal anesthetic so the after surgery pain starts about 4 hours after surgery when the anesthetic is out of my system. For me it's best discribed as being raped with a tree trunk in my ano, as a matter of speaking. So thank god for morfine! Always remember that in these days in 2013 it's not necessary to be in so much pain, so make sure you get the right amount of painkillers. The most severe pain will go away in a couple of days and will make place for the discomfort and getting used to the feeling of the seton at every move you make. There are some lucky ones that don't feel the seton at all, if so, I am sincerely happy for you:-) In all the other cases I guess it's just a matter of getting used to the feeling. It's not painfull, just not very comfy especially when you take a long walk in very warm weather. Now there are times I forget I have a seton.  

Life with a seton

I have had no restrictions after my seton was placed. I can use the bathtub, go swimming, sport, have sex, eat and drink normally, etc. You just have to figure out for yourself  at what time you think you're ready for taking part in activities again. I have to admit that because of the placing of the seton and the fact that pus is still coming out of the opening I sometimes feel less sexy than before. But then I keep in mind that I'm glad there is such a thing as a seton to prevent me from beeing in the hospital with an abscess every month. Now it's only every two months;) If you are in a relationship or single and dating, the seton shouldn't hold you back on being intimate. If you are with te right person he/she will understand your initial insecurity and support you.  

Perianal fistula's

As I explained earlier what a perianal abscess and a fistula is, I'm now gonna show you the types of perianal fistula's. Yes you've read it good, there are also types in this kind of fistula's. The types depend on the place they're in your butt and whether or not they cross or go through your sphincters. Ruffly speaking there are 4 types of perianal fistula's as seen on the picture below:

The percentages in the picture stand for how often this type of fistula occurs. What's not shown in this picture is that the placement of a fistula can be higher and lower. A high fistula is more close to the bowel.

In cases where the fistula is still cousing absesses an abscess will develop from the track of the fistula.

My fistula is a high Trans-sphincteric fistula. That means it's beginning is high up in my rectum, goes through both sphincters and ends up in my butt. My fistula track has developed some side-tracks and started to create abscesses here and there, those are the red dots in the drawing below. It shows just how a fistula can develop.

Because of the placing of a perianal fistula it's not just a matter of cutting it out and that's it. You see, when they would cut out the fistula they will have to go through your sphincters and that means incontinence problems. That's why the surgical treatment of perianal fistula's are limited.

 

When a fistula is not treated infections will keep running through it and sooner or later will pile up and develop an(other) abscess.

 

I will talk more about the treatment of perianal fistula's in another post.

My story: my first surgery

October 2011

I will start where I left off.. I was going home with a lot of pain medicine to wait 4 days for the appointment with this specialized surgeon. I had mixed feelings about an upcoming surgery. If they would have operated on me days before, I wouldn't have been able to get really nervous about it. Now I knew it was still going to take place, but I didn't know when. So I didn't really get much sleep those days, also because the pain was still killing me. After 4 days me and my mom went to the appoinment at the hospital. The first thing the surgeon asked me is why I was still sitting on one side of my butt? Well, because we were waiting for you to perform surgery on me, as discussed with this ER surgeon.. My mom and I were looking kind of proud when I told her this, I mean, I have waited 4 more days in so much pain, I thought it was quite an accomplishment. But the surgeon started to look really pissed off. She looked me straight in the eye and told me this was a very serious very dangerous situation I was in. That abscess should have been drained immediately. And she told me because of what she had seen on the MRI, it wasn't going to be just one surgery, she would probably have to operate on me numerous times to get this under control. She was very angry with this ER surgeon, he had made a mistake by not operating on me and letting me go home. Whoops.. My mom and I looked at each other and didn't really know what to say. I guess we were both flabbergasted. I thought it was just a matter of draining this stupid bumb and that would have been it.

The surgeon told me she was going to change her agenda that day because I needed to go in surgery as soon as possible. I wasn't allowed to eat or drink anything from that point on and had to check in to the hospital again. About 3 hours later, they told me I was going to the operating room. I had to put on this blue long shirt with buttons that was open in the back. And had to take everything else off. The nurses wheeled me in my bed to a pre-operating room. I had make-up on which they were trying to remove (It's good make-up) and I had to wear some weard thing to cover my hair. They gave me a very nice warm blanket and then I was wheeled to the operating room. Because I was going to have an epidural I was going to be alert during surgery.

The operating room looked a lot smaller than what I've had seen on tv. I have this sick interest in surgeries, so eventhough I was nervous I was also exited to be in such a room myself. You see a lot of equipment monitors and a big lamp. And now I knew why they give you this warm blanket, it's freezing there! I had to switch from my bed to the small operating table. The anesthetist stuck a needle in a vane in my arm for the anesthesia. And then I had to sit up straight for the epidural. This was the part I was most scared of. I had seen epidural needles on tv and the idea of them sticking that enormous thing in my spine was just terrifying. So I just squeezed the hand of a really nice assistent-anesthetist untill they told me it was done. I had to lay down again and they were installing some sort of thing to put my legs up. Like I was going to have a baby.. At that moment I really wished I was there to give birth instead of that stupid abscess. My legs started to feel numb. When they lifted up my legs to place them in these standerds I couldn't feel a thing. That's just so weird. I felt my belly and I couldn't feel my hand till just beneath my breasts. My surgeon and some of her assistents came in. They placed a green sheet as a curtain between my upper and lower half of my body so I couldn't see what they were doing down there. I also had stickers with wires on my chest and a thing on my finger. The assistent-anesthesist was sitting next to me to monitor everything. Because I couldn't see what they were doing and I was really nervous I just started babbling to him. I could hear my surgeon teaching some of her students, I could also hear what she needed next from the tooltable. After about 45 minutes she was done. She told me the surgery went well. My legs were layed down and I was switched from the operating table to the hospitalbed and wheeled to the recovery room.

In the recovery room they hook you up to monitors again and check on you like every 10 minutes. I asked the nurse what all the lines on the monitor were standing for. They check your heartrate, your oxigyn level and your bloodpressure. They take your temperature from time to time and they also check your bladder with an echo to see if it is full. If so, they will stick a catheter in it. Luckily mine was almost empty.. I hoped it stayed that way because I saw my IV therapy dripping really fast. They also had some liquid pain medicine hooked up to my IV. Next to me people were sleeping and snoring really loud, some were in pain, some were confused, some were pucking, some were crying. And I was just watching all of this, meanwhile constantly feeling my legs if I would start to feel them again. I think after an hour I could wiggle my toes again:) The nurses told me that when I could wiggle my toes I would be brought back to the hospital room, so I proudly showed them my wiggling toes. I also wanted to get back to the room because I was starving, I really wanted to eat something, anything. I was wheeled back to my room shortly after that and my parents were allready waiting there. Later on also one of my sister's and some friends came to visit me, sweet:) I was feeling really weak but no pain and I wasn't nauseous. So I babbled along about the surgery and all till visiting hours was over, then the nurse came to my bed to check up on me and told me she was going to take a look at the wound and clean the wound. I thought oké, you do that, I was kind of curious myself about what my surgeon had done and what the damage was. I didn't know my happy-after-surgery mood would go downhills pretty soon after..

What is a perianal abscess?

First of I will start by telling you what an abscess is: an abscess is a collection of pus. It has some resemblance with for instance a pimple. Except an abscess can grow really big and it's more like a capsule filled with pus due to an infection process. It can be caused by an infection, bacteria or even a splinter.

And what is pus? I know this can gross some of you out, but I really had no idea what I had to picture myself when they were talking about pus. In my mind it had some resemblance with the white stuff from pimples. Don't worry I'm not gonna show you any pictures (you just youtube 'abscess drainage' and you know why not;)). I think I can describe pus best as a light pinkish milky fluid with a particular smell that I recognize immediately.

Back to the abscesses.. As I said earlier I have had several perianal abscesses.

A perianal abscess can be formed when for instance a hair has grown into your butt and started to infect. It can also be caused by an anal infection, fissure or STD. I've had three male hospitalroomies with an abscess due to ingrowing hair. That's the most common abscess. That's also why more men than woman have abscesses. My abscesses are caused by the fistula as a symptom of Crohn's.

When you have a perinanal abscess you start to feel a horrific pain in your ano, in your butt, near your butt, etc. Especially when you sit down or walk. I once asked my surgeon why it hurts so badly, I mean, it's in my butt and that's mostly contains fat. How can something in fat hurt? She told me, that it hurts simply because the abscess creates a whole in a space where there's no space to make a whole. It keeps growing and growing, trying to make a way out. And that way out is usually the skin on your butt. That's when you start feeling a bumb. Besides the pain you can start feeling sick, get a fever, chills and the bumb can turn red.

Sometimes an abscess can burst by itself. But most of the time you really have to go see a doctor who then will drain the abscess. With a 'simple' abscess it can be done without any anesthetics. I've read blogs with people telling they just drain an abscess themselves. (Un)fortunately my abscesses can only be drained in the hospital by a good surgeon.

As soon as the abscess is drained you will feel the worst pain is gone. What's usually left is the pain of the surgery itself. You will come out of the surgery with an open wound. When the abscess wasn't to deep you can leave the hospital the next day. They will probably let you choose between taking care of the open wound yourself by showering the wound twice a day or get homecare. Homecare means that you get a nurse twice a day who will clean out the open wound with (salty)water. The nurses will use a drain or catheter to get into the wound so it can be flushed properly. I've had some bad experiences with the catheters and flushing because it just kept hurting so much. Eventually they gave me a morfine injection half hour before they were gonna clean the wound(s). When the wound is cleaned you get a bandage that will protect the wound from outside infections.

Sometimes they also use gauze that they will stuff into the open wound, just to keep it from closing. When a wound is still not infection free when it closes you will soon be having another infection. The problem with gauze is, that it has happened numerous times that someone forgot to take it out while taking care of the wound. In that case the pain will increase and the wound will get infected again. I've had that ones, omg that started to hurt after a few days, after that my surgeon decided not to use homecare anymore but wanted me to shower the wound myself.

I've also had surgeries were they drained the abscess and left the wound open with a drain in it. I guess it's different each time depending on the place, severity and size of the abscess.

In my experience the open wounds will heal in about a month, depending on the size. With a drain and all inside it takes longer. I still wasn't able to sit for a long time, but that's because my fistula keeps producing pus and the wounds can't heal properly.

My story: abscess

August 2011

It started with pain in my butt. It was difficult to sit and my bowell started to hurt. It was such a discomfort that eventhough I didn't really want to, I had to go see my doctor. He told me he had to feel on the inside of my butt, exactly the reason I didn't wanted to go to the doctor;) But the pain was so bad, that I thought: well just do it then and make me better. He said I had a fissure that was causing the pain. I had to use a ISDN cream that gave me a terrible headache and in about 3 weeks it should be healed.

After 2 weeks the pain was still the same, so again I went to the doctor's office. This time I had a female doctor who thought it might be hemorrhoids and my IBS (Irritable Bowle Syndrome), so I had to take pills and it would all go away. But again, the pain started to increase.

The third time I went to the doctor I was asked if maybe I was depressed.. (?!!) Yes ofcourse, I'm imagining the pain, just crave for attention and I just love people to stick their finger in my butt.. No, I'm in a lot of pain! She said it maybe was time to make an appointment for me at the hospital to have a better look inside my rectum, I was scheduled for 2 months later! How was I suppose to do that? I couldn't sit, couldn't go to work, had so much pain and was feeling sicker and sicker. I started to have a fever and a couple of days later felt a bumb in my butt, near my rectum. So I called the doctors office again, and the doctor said: 'oh am I glad you're feeling a bumb, because that's how I know what it is now, you have an abscess. Just wait a couple of days because it needs to grow ripe and then I can make a little hole in it and drain it'.

Hmm.. Oké an abscess, that sounds gross. Especially the riping part. Like I have a big pimple in my butt that they have to squeeze out.. But it also meant that I finally knew what was causing all this pain!:)

However, in the following days my fever started to rise and my mom was really worried about me. She went to the doctors office and talked to another doctor about me. That doctor wanted to see me at the doctos office the same day. When she saw me, she told me she could tell I was in a lot of pain for a very long time. And while she said that, I broke down and cried. Finally someone who believed me.. She told me I had to go to the emergency room of the hospital immediately.

So I called my mom and dad and we were in the emergency room about two hours later. A very handsome assistent-surgeon first had to feel on the inside of my butt (ofcourse:-/) and than stuck a needle in the bumb. There was no pus coming out.. He walked out of the room and came back with another surgeon. She also stuck a needle in the bumb and pushed really hard. Oh that hurt so much! She did manage to get pus out of the bumb. So yes this was a fully ripe abscess an they told the nursus to prepare a surgery room, because they were going to operate on me to drain the abscess. Huh? I guess I looked kind of shocked when they told me this.. I only had a surgery ones, and it's not like my favorite thing to do..

After that it all happened so fast. I had to go to anesthetics first. There they told me I was going to have an epidural, which I didn't liked. I wanted to be very much asleep during surgery. But that was not up for discussion. First of all, I ate a cracker 3 hours earlier and secondly the pain reduction after the surgery works much longer because half of my body would be numb for a couple of hours.

I had to check in to the hospital, they showed me my bed, got my nametag bracelet, like I was checking into a resort. And I had absolutely nothing with me. I was still wearing my dress and high heels, haha..

Then they wanted to make an echo to see the exact size and location of the abscess. When they made the echo I was also able to look at the monitor. On the screen I saw a lot of white clouds. The man who was making the echo stopped and seemed very worried. I'm not a doctor, but even I could tell this wasn't just a tiny abscess. The abscess had the size of an orange and the whole area around it, till my bowel was infected. The surgeons didn't want to take any risk and therefor also wanted to make a MRI before operating on me. I was scheduled for the MRI the next morning (I will tell you more about MRI's in another post). A surgeon came to my hospitalbed with the result of the MRI and told me it was going to be a difficult surgery because it was near my sphincters. If they were to make any mistake I could become incontinent. What?! He told me he could try to drain the abscess that day or I could wait a couple of days because there was a female surgeon specialized in this kind of surgeries. She was going to be at the hospital 4 days later. Ofcourse I wanted to wait, I've managed the pain for more than a month so 4 more days shouldn't be that hard. It was like making a decision between diapers and pain. I choose pain. He also told me I could choose to stay in the hospital or wait at home and come back 4 days later. Because of my fever and all the bacteria in a hospital I went home. The appointment with this specialized surgeon was scheduled for the next tuesday.

What is a fistula?

For this topic I'm gonna quote Wiki first: a fistula is an abnormal connection or passageway between two organs or vessels that normally do not connect.

Did you know a fistula can occur from head to toe?

With Crohn's fistula's usually occur:

• Anal (perianal), these connect the anal canal to the surface of the skin near the anus
• Bowel to bladder (enterovesical or colovesical)
• Bowel to vagina (rectovaginal)
• Bowel to skin other than near the anus, like the abdomen (enterocutaneous)
• Between bowel and or intestines (enteroenteric or enterocolic)

About 1 out of 3 people with Crohn's will sooner or later develop a fistula(or two). Fistula's are much rarer in people with Colitis.

I have a fistula in what they so clinically call the perianal region. That means the fistula is near my rectum. When I have to discribe to people what it is, I always have two kinds of explanations:

1. it's like a pacman. A pacman (bacteria) has been eating it's way through my inflamed bowel wall searching for a way out. Don't ask me why but this pacman just kept eating his way down to my butt, of all places. Guess he thought this was a shortcut. The path he has created is what we call a fistula;
2. it's like the white nerve you see in steak.

The longer version is that the inflammation with Crohn's can spread through the whole thikness of the bowel wall. When this happens particularly in the lower part of the bowel it can cause small leaks and abscesses(collections of pus). As the abscess develops it may 'hollow out' a chamber or hole. This then becomes a passage or channel linking the bowel to another loop of bowel, another organ, or the outside skin. When the abscess bursts, the pus will drain away, but the passage or channel may remain as a fistula.

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http://bodymri.stanford.edu/clinical-services/perianal-fistula

http://bodymri.stanford.edu/clinical-services/perianal-fistula

*Above a MRI of a Fistula, the white stuff you see is the Fistula track