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Rectal fistula - What next?

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Crohn's Disease
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Posted 3/8/2018 12:18 AM (GMT 0)
I'm just after some advice. A year ago I got a personal abscess. Had it drained twice and then an advancement flap. It didn't heal and my specialist examined me under anestbetic. He said the flap looked fine but there was a small internal opening high in the rectum. He used a staple to close it and I went home to recover. Unfortunately it's not healed again and I have same symptoms. My question Is, what next? Does anyone have experience with high rectal fistula? I get throbbing pain a few hours after every bowel movement and constant pus. I'm scared that this just can't be fixed. My specialist seemed pretty confident the staple would do the trick. I don't have chrons.
Posted 3/8/2018 1:12 AM (GMT 0)
I'd love to know how many times the rectum can be operated on before it becomes too weak from repeated procedure? Or is that not an issue in non chrons patients? I'm scared I only get a few shots at this..
Posted 3/8/2018 1:56 PM (GMT 0)
Hello my DBrookenz, Sorry to hear that you are still having troubles (as I am as well unfortunately!)

I hope somebody else with more experience can help more, but I will give my 2 cents....
I asked the same question to my CRS on my last visit three weeks ago.
He told me that my two surgeries (FiLac) do not really count as surgeries, as the sphincter has not been messed with.
Now, in all likelihood my next surgery will be cutting seton. That counts as a surgery! Hopefully it will work.
I believe the same applies to LIFT and - to a lesser - extent with FLAP. FLAP is a little bit more intrusive as it impacts the IO surface.
Hope things improve for you; Will you follow up with your CRS? Don't let this thing get you down and don't suffer in silence my friend.
Posted 3/11/2018 1:43 PM (GMT 0)
DBrookenz, I agree with Dimitri. As long as there is no cutting into the muscle, you should be able to operate in the area a fair bit. Ask your docs, they should be able to put your mind at ease, unless of course, they are cutting into muscle, then you need to discuss options. Most docs won't due it to Crohn's patients because problems are likely to recur and healing is slow.

As for the setons, I hope you have better luck than me. They are a constant source of irritation. This is an awful thing to say, but I have learned from my own experience not to have too many positive expectations, as they will lead to disappointment.
Posted 3/12/2018 6:46 AM (GMT 0)
Hi Steve,

I don't mind hearing a few plain truths. Every time I've had an op I've convinced myself that will be the cure and here I am, still struggling with a fistula. Can I ask if you have chrons? I'm not sure if be a candidate for a cutting seton as my fistula is very high up in the rectum. I hope i can get a LIFT or another flap as I've read that these old can be successful second time around. The idea of a set on is just plain horrific for me as I feel they're just a using period and nothing more. Plus the fact my fistula is very high in the rectum means that the set on aches a lot, if my first experience is anything to go by.

Thanks for your advice. I appreciate it.
Posted 3/12/2018 9:04 AM (GMT 0)
Hi DBrookenz, I hope all is well.
I re-read a very interesting study which should give you some serious hope. It's Irish and called " The role of loose seton in the management of anal fistula: a multicenter study of 200 patients" - you can find it as a free PDF if you google it.
This was a multi-institutional study, including data from four institutions in Ireland (St Vincent’s University Hospital, Dublin; St Vincent’s Private Hospital, Dublin; St Michael’s Hospital, Dun Laoghaire; Blackrock Clinic, Dublin).
It includes both Extransphicteric (8%) and Suprasphincteric (6%) Fistulas, which as you know are the toughest (extremely high in the rectum entailing the whole external sphincter).
The therapy consists of a draining seton for about 8 months on average (including it being three times replaced and tightened). Something like a long-term cutting seton with three long-term tightenings... In the end the fistula was taken out with a superficial fistulotomy. Success was 100% recurrency 5%. Minor Incontinence for 4% (only urgency).
Please read it because in case your fistula is really high in the rectum as you describe, then this could be a good choice for you. Don't get dissapointed my friend - there is cure for all types of fistula if you persist.

Post Edited (Dimitri71) : 3/12/2018 3:22:27 AM (GMT-6)

Posted 3/12/2018 10:47 PM (GMT 0)
Thanks Dimitri,

Any hope is better than no hope! My worst fear was that my specialist will just tell me I need an indefinite seton forever. That idea is tough to handle considering I don't have chrons, as it seems to be chrons patients only who get that difficult diagnosis.

That study is promising. I'd be happy to go another 8 months of loose seton in the knowledge that I could get a fistulotomy at the end of it! I want to go to my follow up appointment in 3 weeks armed with all the information I can get. My specialist is nice enough, and he is a renowned expert in the field of anal disorders, but I always feel like he considers me small fry and at the low end of importance. I know it's not life threatening or anything but the toll it takes on my mental health, not to mention spending half the day with a low key throb and discomfort in my anus, means that it dictates my life. As you probably know, having any problem in this region effects your ENTIRE being. It's not like a sore ankle where you can rest it or get your mind off it easy enough.

At this point I'm willing to try anything and that i ncludes months with a normal seton. Thanks for the advice Dimitri. Please keep us up to date with how things are going your way. We got this awfult hing around the same time so I feel we are weirdly connected in our recovery. We will win against this thing eventually!
Posted 3/14/2018 1:12 PM (GMT 0)
DBrookenz, Yes, I have Crohn's. Had it for about 13 years. I currently have 3 setons for an extremely complicated horse-shoe fistula around my anus. I am relatively symptom free with respect to my Crohn's right now, but the setons are a constant source of irritation. For one in particular, the knots like to migrate into the wound which is just wonderously uncomfortable. And the drainage smells. It's fabulous. I too look forward to reading that study and providing it to my doctor. I can't/won't live my whole life with these setons. I hate them.
Posted 3/17/2018 2:26 AM (GMT 0)
Sorry to hear about the ailment,I hope you recover soonest,it is really a test of patience.

Have you had a diffusion mri or endorectal ultrasound?

Why not try vaaft?
Posted 3/18/2018 10:30 PM (GMT 0)
Thanks for your thoughts, my friend.

I have had an MRI. Not sure if it's the type you refer to but they did inject a fluid into me to help locate the fistula. It was on the MRI that they saw the fistula opening high in the rectal area. As for Vaaft, I'll mention it to my specialist when I see him next week. At the moment I am trusting with what they decide. So far I've had an Advancement Flap which my specialist said worked fine, that area is closed, but the higher internal rectal opening wasn't seen at the time (I got the flap prior to my MRI). For the second op my specialist put in a staple. He did not tell me the name of the operation so that's all I have to go by. He is a locally renowned CRS so I trust his judgment. My fistula feels about 30-40% pain wise better than it did prior to the staple op, though the drainage is similar and I get a small but constant amount daily, so I'm hoping this means I am chiseling away at it and will eventually get rid of it entirely!
Posted 3/19/2018 9:54 AM (GMT 0)
Hi dbrookenz, good to hear you're better. let us know how it goes with your CRS.
I don't belive they have VAAFT in the USA. They do have FiLac though.
In the UK it's the other way round.
Posted 3/20/2018 1:39 PM (GMT 0)
ihave had Crohns since 1967, have been on steroids all of this time plus other medication, I have had 3 surgeries to remove blockages none since 1989, my Dr wants to put me on Entyvio to see if it would make a difference in my health, the meds I have been are not working as well as previous years, I have read all the side effects of the drug, I am a little worried about them, any thoughts on the subject
Posted 3/20/2018 2:52 PM (GMT 0)
Dimitri,

Was that "Irish Study" you referenced on patients with Crohn's? I read it twice and I saw no mention of that. I ask because treatments for patients with Crohn's are just different. I actually mentioned the study to my doctor and the first question they asked was - was it on Crohn's patients?
Posted 3/20/2018 3:08 PM (GMT 0)
Frenchy, if you will go to CCFA.org, I believe they have a section there about the potential side effects of these meds & hopefully this will ease your mind. All of us were scared at first when it came time to make the medication decision. It comes down to feeling better & quality of life.

Take care.
Posted 3/20/2018 8:30 PM (GMT 0)
Hi Stevo, yes it includes Crohns as well.
you can find the PDF for free if you google the title and then go to the researchgate link.
AND THEN click: download full text PDF

If you go to page 3 figure 1, you will read that 23% of the patients were Crohn's patients and 5% had ulcerative colitis.
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