Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » My FISTULA Story (FiLac, Cutting Seton, eventual success and Advice)



07-04-2018, 04:36 AM   #1
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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 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 your reach 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.
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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » My FISTULA Story (FiLac, Cutting Seton, eventual success and Advice)
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