My FiLaC Experience

Hello everyone

I recently had FiLaC and thought I’d share my story for anyone considering this treatment. It’s a bit long but there’s a short summary at the end, for the time conscious folk.

To set the mood ;) I have perianal CD with complex rectovaginal fistula (one internal opening and three external). I am on Remicade and Imuran but Remicade is not working and there’s been no shift in the inflammation unfortunately. I’m also on 1,200kCal a day from nutridrinks (Resource 2.0 Fibre).

With regards to my RVF. I had three draining setons for 8.5 months prior to FiLaC and these have been changed once (planned); a new, small abscess was found at that point confirming Remicade is not working. Level and antibodies are all as good as can be though.

I had changed my CRS to one who does FiLaC and who, as I learned later, seems to do everything under the sun for his patients, including long winded fights with insurance companies to get them to fund more than what they initially want. He even installs some battery operated thingies and gives people their fecal continence back!

Back to FiLaC though. I had my initial consultation and examination. Best feeling ever when he examined me and made this looong noise as if to say “oh crap, this is bad”. I was advised that he felt confident in using FiLaC on the two side tracts but the main RVF was a) too big and b) my anatomy just didn’t allow for laser in that particular area. Yay and boo all at once! However, he thought it was suitable for a plug, once the inflammation was under control.

Three weeks later and I got two lots of something very, very unpleasant squirted up my bum to clean the area in preparation for the surgery. This, btw, was the most uncomfortable part of the whole experience. I was in a lot of pain and couldn’t even keep it in for ten minutes, let alone the recommnded 30. And I’m a tough cookie. Worried that I wasn’t clean enough I asked for more but CRS said it would be fine. Boy was I relieved!! No pun intended.

Surgery

The surgery lasted 40 minutes and the surgeon revised the whole fistula to make sure there are no additional openings or any other surprises. Which there weren’t but there was a lot of inflammation, way more than he expected. Luckily, he was able to use FiLaC on both side tracts, as planned. I was very happy about this as had been worried I had another abscess in the making.

The tracts were “matured” i.e. they were clearly defined thanks to the setons. This is crucial so the laser can react with that tissue. If the tracts are fresh, the laser doesn’t “stick” to them. The longer the draining setons were in, the better.

He also changed the draining seton in the main RVF tract. The not so pleasant surprise for me was that he had made the external opening for this one a bit bigger so it can drain better and more freely. By this I mean he cut some tissue off. Nothing major but this was the part that took the longest to heal. This has nothing to do with FiLaC.

In on Monday, home on Wednesday. Long story but I drove myself there and back no problem (120 miles each way).

Recovery

The pain was not bad. Until the infection came. I developed a temperature so started antibiotics two days after surgery. I had a pretty bad infection in the area where the tissue was removed, so again not the FiLaC site.

Both tracts treated with FiLaC were a bit swollen and a bit sore for I’d say couple weeks. I am certain the infection had a go at them too but they kicked its butt!

I was told the tracts would be quiet for about a week and then they would start draining black flecks (burnt tissue from the laser) which is a cleansing process. It took TWO days and I had black flecks coming through. In my head, this surely meant the surgery had failed. Luckily that wasn’t the case at this point. It seems the infection just sped things up.

Now, one tract had that speedy cleaning thing going on and once Cinderella was done in there (think about 9 days), it just closed up. *insert happy dance*

The other one is a different story. That one was calmer with drainage and cleaning itself but that’s because this party pooper was sneakily making a new abscess. Slow and steady wins the race and all that and I only figured it out two weeks post op. Being the Bob the Builder I am, I drained it myself. CRS was as cool as ever and felt we didn’t need to move my check up which was in a week’s time from then. The drainage decreased after my masterful DIY draining.

The Check-up

I had that today! CRS is happy with everything and thinks the misbehaving tract will close itself. There is some purulent drainage when pressed but CRS said it’s impossible to say if it’s from the tract or just my CD, without a colonoscopy. I really do have some bad inflammation there.

The Future

That will be the second stage surgery for my RVF aka the plug. I got Pentasa supps and might need local corticoids to get the inflammation down. That’s not FiLaC related though so I will stop here.

Summary

Life’s too short and I appreciate I have ranted on and on so here’s a summary for all of you who can’t be bothered reading the whole lot. :D

I had FiLaC three weeks ago on two side tracts of my complex RVF. Preparation was unpleasant, surgery lasted 40 mins, including a revision so FiLac itself would have been shorter.

The pain was not bad, I’d say managable without painkillers, if you can rest. Which I couldn’t with a toddler who I’m sure has a stash of speed somewhere... and a big dog that is forever undercuddled and knows about that stash.

The FiLaC sites were quiet for couple days and then started draining black flecks which is when they are cleaning the dead tissue. This usually happens about a week post op but mine was quicker.

One tract drained like that for about nine days and then it stopped and closed completely. The other tract drained less but it had formed an abscess. I drained it myself and it had calmed since then.

CRS is happy with progress and feels the other will close up too.

Main RVF will be treated with a plug, when the inflammation from my CD allows.



Phew, that was long, sorry! Any questions, let me know.

Thanks Dimitri

It’s actually thanks to you that I have found this CRS. You wrote on here about looking into FiLaC and so did I on the back of it. I really liked the sounds of the procedure, forwarded a study on it to my GI and she got me in touch with now my CRS. If it wasn’t for you, I wouldn’t have bragged on about it in the first place! So thank you very much for sharing info on here.

Tbh I hoped that at least one tract would close and one would be at least decreased in size and output. I genuinely expected that I would have to go for a second FiLaC. I know you chose a different method and it worked for you (big yay!!) but I knew I’d go for the laser again. Discussed it with my CRS too. Think he was surprised how much I knew. All hail the internet!

And you’re right, the good ones are magicians. I spoke to the hospital’s financial coordinator and she said that my CRS has not yet had to do a repeat FiLaC! Love the guy hehe.

Sorry Dimitri, I missed your reply completely!

Ah my apologies, I thought you only had one FiLac. I was 100% sure I’d go for it again, had the first one not worked fully. But it seems to have! The second tract now appears closed too! :D Really happy about that.

Now that’s done, my mind is naturally raising concerns with the next stage hehe. I was given suppositories and they worked really quickly. Almost too quickly, making me wonder what would happen if I had the plug done, the supps were stopped and the inflammation came back... more questions for my CRS. I’m sure he knows what to expect from me now though.

So how’s life without a fistula? :D

I have two side tracts and both are now closed thanks to GiLaC and the Crs’s magic hands hege. Now what’s left is the main fistula. But my inflammation is not under control it’s just not responding to biologics or Imuran. So I’m a bit worried about going ahead with the plug if, in my opinion, the inflammation will just make new abscesses/fistulas. I mean, what else is it supposed to if the exit channel is no longer there?

I don’t tend to be a Debbie Downer but blind optimism has never been my thing!

Well hopefully with time you will only worry once a week, then once a month and then only on your “anniversary” of start/end of all fistula related stuff! Fingers crossed for you.

Hi Dimitri

That’s what we’re trying to eliminate though. Just spoke to my GE and apparently I can be on Pentasa supps for years. So should be ok hopefully! Onwards and upwards. :D