My FISTULA Story (FiLac, Cutting Seton, eventual success and advice)

This is a summary of my story. I think it is an imperative that I present my story in summary; I know that many people go back to each and every post in order to get the complete story (like I did, in pure agony, trying to figure out things). If you read this executive summary, you will save yourself some time.… So here is my Fistula story:
- I was diagnosed with Fistula on June 2017.
47 years old, healthy up to then, sports 5-6 days a week, no drinking or smoking BMI of around 25. Some minor irritable bowel symptoms (I drank a lot of diet cokes per day, sometimes together with Mentos; not a very good combination for your stomach if your read about it on the web). I don't anymore.
No Crohn’s (although Crohn’s people should read on because I’ve got some useful info regarding Filac).
My perianal fistula diagnosis was a HUGE shock. Primarily because I had never seen or heard about a fistula before. I was diagnosed with a mid to high transphicteric fistula at 13:00 o clock. Not a very easy one….
What I immediately did was to learn EVERYTHING about fistulas.
I also researched -like crazy- to find a top CRS. I changed my mind a couple of times in the beginning, had a first appointment with 6 different CRSs until I decided to go ahead with one. Don’t feel sorry about the money you spend on a CRS. It's a good investment.
My decision in regards to the CRS was also affected by my methodology choice:Through my study of the matter, I decided to go with FiLac surgery which I found to be the most recent innovation in sphincter saving techniques. To a large extent I chose my CRS based on the Filac technique (as my CRS is an expert in FiLac). Please note that Filac also works for people with Crohn’s. However, FiLac did not cure me as you will read further on. But Filac can help improve fistulas and has a fairly good record of success (around 60% - 70%). In any case, whether you have Crohn's or not has no effect on the results.
ADVICE NO1: Find the best CRS immediately. Meet at least 3-4. If you are not sure about a CRS, just don’t go with them, you’re probably right. Choose one for whom you are 100% sure. It’s like finding a partner…believe me. Make sure they know all the possible techniques (new and traditional). They also need to be of good character and REALLY compassionate.

Even if you find the best CRS however, things are not that simple. Our friend -NOT-the surgery is still there, waiting for you.
I was really scared of surgery, scared like crazy.

ADVICE NO2: Act as if you’re not scared of surgery; You have no choice. Fistulae don’t heal by themselves. Just go for it and…………….. keep walking.
My first surgery was a draining seton (sometimes a necessary precursor to FiLac).
- Draining Seton August 2017-
The surgery was a lot smoother that what I thought it would be; You get knocked out after a mild drugs cocktail and you wake up in a great mood. My recovery was fantastic; I was playing sports a couple of days later.
Had my summer holidays in Greece with a draining seton. You can more or less function by changing gauzes 3-4 times per day. Not the best, but what can you do, at least no fear of abscess.
After the holidays I came back ready for surgery. As planned, during the beginning of October I had my first Filac surgery.
- First Filac October 2017-failed
I was disappointed when it failed; but thanks to my family and my persistence to beat this thing I did not give up.

ADVICE No3: Never-ever give up. This thing is curable (at least in the overwhelming majority of cases).
Fistulae are -in my view- primarily a psychological disease; they wear you down psychologically. The physical aspect is bad but not terrible and certainly not lethal.

Thought about it a bit and decided to go for a 2nd FiLac. I had a great surgeon who was 100% sure this would eventually work out.

- Second Filac February 2018-failed but improved the situation and made cutting seton possible. The fistula became more superficial…
That was good news. Now I was beginning to be more optimistic and slightly impatient, as the cutting seton methodology has very good results. So I wanted to get on with the next surgery; However, I was a bit concerned about continence matters; As you may know cutting seton can – on occasion – cause some incontinence. My CRS was however very sensitive to this matter (I believe all CRSs are). So that was a reassurance.

- Fistulotomy and Cutting Seton May 2018 - healed (wound closed and no drainage / symptoms since the beginning of June).
No incontinence; no problems holding gas. Maybe some urgency prior to a bowel movement in the morning, but really really minor stuff.

ADVICE No4: Your CRS is worried about continence as well; He will not cut if he is not able to.

In fact, I would have pushed for a cutting seton prior to my second FiLac surgery.

Which brings me to
ADVICE No5: If your CRS is able to cut (with no incontinence), don’t waste too much time with fancy sphincter saving surgeries.
That’s because every surgery takes a toll on you (both physically and psychologically) and a failed surgery makes you feel like you are not going to get rid of this thing.

Which brings me to advice No6, my most important advice I believe:

ADVICE No6: Once you are diagnosed with a fistula DON’T CHANGE YOUR LIFE!!!! Your life is not over; don’t prepare your will; don’t quit your job; don’t despair; Instead ACT NORMAL; in reality it is an OPPORTUNITY; to re evaluate life, to spend more time with your family, to help others, to strengthen your faith in God, life and nature. BE OPTIMISTIC and KEEP PUSHING until you have reached an improved result and ideally healing!!
All the best to everyone! Let me know if I can help!! God bless this site and people giving free advice. It is a life saver.

Post Edited (Dimitri71) : 7/4/2018 5:50:45 AM (GMT-6)

Hi James, thank you for your message.
Glad that things are progressing well and that my story helped.
Are you based in Greece, are you Greek? I am actually based in Greece and Greek, have lived in the US in the past.
For me the cutting seton was not a very big deal. My CRS did not have to tighten the cutting seton many times, just once during the surgery.
I had a fistulotomy and a cutting seton at the same time during my surgery. So the CRS cut the part of the fistula outside the sphincter and for the part that was within the sphincter he used a cutting seton. He told me that it would take around 10-20 days for the cutting seton to fall off in reality it took around a week.
The pain was minimal during the first couple of days and then about the 5th or the 6th day, it hurt more (it hurt A LOT to be honest) and then the cutting seton fell off while I was in the shower. I saw it and grabbed it!
Then I took it with me to my CRS to confirm that it was the right one, because it was really tiny! He confirmed it was After it fell of it took about 1 month for things to heal and drainage to stop.

Good luck with everything!! I am sure things will go well. Cutting seton is a pretty effective cure.

Post Edited (Dimitri71) : 7/30/2018 8:11:45 AM (GMT-6)

Hi Susie, thanks, you never know with those things - but indeed I hope I continue to do well...better than the alternative for sure!!
This disease experience has been a great journey for me; Also, as you know, with those types of ailments, even if you're cured, if you get them once, you never really get over them (psychologically at least). So I'll be around.
I think we ought to share our stories - knowledge is power and should be available to everyone.
All the best and good healing.

Post Edited (Dimitri71) : 7/30/2018 2:22:51 PM (GMT-6)

Hi Dimitri71 thank you for your quick reply and your comforting words, I went to see my CRS today and he said the seton is already cutting into the muscle he said maybe 2 weeks for it to cut thru I can't wait and be done with this. your are correct it is a physiological issue aside from a physical issue once again thank you I'll keep you posted on my progress.

James thanks, sending my support! You will most likely get some intense pain as this thing progresses, but it will bring the desired result in the end!
Hi nofistulas, good to hear from you!
Hope things get better for you. Have you healed or do you still have drainage?
In regards to the pain, keep in mind that some pain post fistulotomy is normal (or the norm). As my CRS told me, when you have a fistulotomy, even if the part of the sphincter which is cut is very minor, the sphincter mechanism is nevertheless affected. So this can mean that some part of your skin (in the area) can be more raw or slightly more sensitive (for example during a BM).

Hi nofistulas, that's really good news, sounds like you're healed then!!

Hi Json,
If you had a cutting seton placed already, the only thing you have to do is wait for the cuting seton to cut through the fistula.
Depending on the length of the fistula it could take from days to weeks.
You have to ask your CRS in regards to how long, it really depends on each case. They know!
Other than that you don't have to do anything! Just be patient!
Cutting seton is good at solving things. Good luck with everything and please keep us posted.

Hi Jason, no worries!
Same thing happened to me, it only took a few days for the cutting seton to fall off.
Now the healing will take around 5-6 weeks and your wound will drain during that time. All the best my friend!

Hi TMA, sorry I don't know about the USA and Filac. I don't think it's well known yet. If you google it some names appear though.
In Greece many surgeons use it.

Hi TMA,
In regards to FILAC and the USA when I google it I get one result for a surgeon in Beverly Hills who seems to use it.
To be honest if I were in the US (I went to uni and worked for a while in the US) I would do a L.I.F.T. because CRSs really do seem to know it very well.
Keep in mind that FILAC similarly to L.I.F.T., has mixed results. Have you tried the LIFT or FLAP;
Yes I was very happy with my CRS and he is welcoming new patients. He is extremely busy, but really caring human being and a superb CRS.
If you decide to visit Greece I'll be happy to recommend him.

Post Edited (Dimitri71) : 3/13/2019 7:44:26 AM (GMT-6)

Hi Hype, these things can be really tough from a psychological perspective; Sending all my support.
From what I understand from your email, you had incision and drainage. That's a necessary first step because even if an abscess pops, it may not fully drain.
Indeed, if it continues to drain one month post I&D it means that it most likely is a fistula.
That realization can feel terrible at first, but really, you should not feel terrible about it. It is not as big of a deal as it seems, Fistulas are not life threatening.
First of all keep a cool head and be optimistic. You need to get a good Colorectal Surgeon (yes get a 2nd opinion) and get a clear picture of where you stand. If it is a simple fistula (90% of cases are simple) then a simple fistulotomy will do. If not and you fall under the most difficult 10% of the cases, then it's not the end of the world. They have alternative ways to approach this (seton, lift, flap etc.). So it will take some time, but you will fix it. Trust your Colorectal Surgeon, they really know their stuff! All the best and keep us posted!!

Hi rubything and thanks, everything is great. Please send me an email to my email on my account and I will forward you my surgeon's info. All the best.