Anyone managing anal fistula without surgery / avoided surgery

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Just wondering, is there anyone managing anal fistula without the surgery intervention?

I've been diagnosed with low transphincteric fistula almost 5 years ago (I'm 45, active male, I swim, play basketball, cycle, etc). It's been ups and downs but never too bad, always manageable, it's is more inconvenience and discomfort with only some slight pain (I've been helped with it few times by Dermatologist). After the visit to the Colorectal consultant / surgeon (hospital appointment) back in December last year (approx 8 months ago). I've been told that the fistula track have formed the solid walls (its like the tube / pipe / channel) and, because it has formed, fistula might stay as it is now (won't get better but might be worse - no one knows). For the past good 6 months it was very quiet and didn't caused problems (only slight occasional puss, no blood, no irritation) apart squeezing out something left / trapped after almost each bowel movement, as the skin at the external opening of the fistula tends to close (after washing out the area gently squeezing / massaging the fistula's "tube" towards external opening). It is only a bit painful if something is getting trapped in this "tube" after emptying the bowels until it can been squeezed out. At the previously mentioned visit to see Colorectal consultant / surgeon I've signed a form to try to "fix" the anal fistula - to go for the surgery (not cutting, but scrapping the walls of the fistula and inserting collagen gel / glue or inserting a Seton if the abcess is found), thinking it might be good to have it done as a prevention ( in case it gets worse, despite not having problems / no pain with it now and managing with it reasonably well). After the long 8 months my scheduled appointment for the surgery is very soon now, but I'm very anxious that it is the right choice (is it worth doing the surgery when there are not a big issue (only as prevention), also, I'm self employed, started job at new place couple of months ago - don't want to risk to be unable to work / do the job properly because of the pain (involves a lot of sitting almost all the day (calligraphy, graphic design), need to come back to work approx a week / 10 days after the procedure, scared not be able to provide for the family (3 kids) not be able to go for activities in the park with my youngest kid, get anxious and depressed). Because of all these circumstances I'm really anxious and I still contemplating to call off or delay / ask to move to the later time the operation (unless it gets painful). Just wondering, is there anyone who's "successfuly" (if it can be said about this condition) dealing with anal fistula without the surgery. Only thoughts that I don't want to have it cleaned / squeezed after each trip to the bathroom keeps me on the side of the surgery, everything else tells me not to have it / do not rush. Is it ok to leave it untreated surgically unless it's painful. Your thoughts, experiences and advice would be telling appreciated. Many thanks!

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  • Posted

    I can't speak from experience as I had the draining seton solution ( still ongoing) but from what I have seen on a fistula Facebook site some people have had a bit of a torrid time for a while after surgery (fistulotomy?)

    This could impact on your work/ leisure activities.

    Personally I would put off any surgical intervention unless and until you start to experience problems.

    good luck anyway whichever way you decide. If you do opt for surgery do keep,us posted on how it goes.

    i would recommend the Facebook group as there are lots of fellow fistula sufferers on there and someone you can share with (or just vent any frustration!)

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    • Posted

      Thanks a lot for your reply. I think the same, I would like to leave it for a while unless it gets worse, just think that it might be too late - the surgery is scheduled in few days time, just fell that I'll let down the doctors / medical personell. I know that it's my body, but feel that it would be inconvenient for doctors and not sure that they'll wish to look after my issue if I'll ask them not to proceed this time. Another thought - it might be better / easier to try to close the "tunel" while there are no serious infection, to try to "fix" it before it gets worse (just no one knows will it be worse or not). Hate the anxiety and confusion about it, can't sleep well recently and keep overthinking about the result and activities / work which I might need to put on hold for some time ( not sure for how long though...)

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  • Posted

    it is never to late.

    I had a nightmare with my first operation and afterwards told my original surgeon who had ordered my MRI. he told me from that point forward I was to only see him.

    on the day pf my second surgery, again it was a different surgeon again. I explained I could not go through with the operation and that I would only see the original surgeon.

    I was then rescheduled with the correct person with no problems.

    take care.

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    • Posted

      Thanks a lot for your reply, gives more reassurance that it's not only me who is dealing with this dilema. What happened with your first surgery? What type of procedure was performed? How many surgeries / procedures you've had? What happened next - hope you feel better and don't need to do anything. Many thanks

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    • Posted

      Thank you - I've checked it out. So sorry to hear what you went through...

      After reading your story Im starting to convince myself that if fistula is not causing problems it's not a bad idea to leave it alone / do not go for surgery as it might create more issues than doing nothing. Recently I was thinking to go forward with the surgery only as precaution in case my fistula gets worse if "untreated". I'm trying to keep the area clean, wash it with soap after each bowel movement. The skin at the external opening is tend to close and most of the time after the bowel movements I need to clean / squeeze out a small /tiny amount of poo out (which is trapped in fistula's tract). Recently I have noticed that I didn't get anything trapped, feels like fistula has started to close internally too. Im maybe wrong, but it feels like the fistula is getting much much better, I just feel the "tube of the fistula if I squeeze and some small hard area around external opening (skin is quick to close there and I guess it's a bit of debris left underneath which I can't get out by squeeze, but it's not painful just tiny bit tender when pressed. As the surgery is sheduled, I'm just so anxious to let down the surgeon and other people asking to postpone the planned operation / to move it to the later date (hoping to see the surgeon / consultant before the surgical intervention in that time to check the area once more). Can't sleep properly, still looking for answers and can't find the definite answer what to do. I trust / like the consultant and don't want to upset him and not be able to see him if I postpone the surgery (messing up with his plans). The surgery agreed 8 -9 months ago was to remove hardened fistula's tube walls and inserting a collagen gel or putting a seton in if there is an abcess present (don't wanted to cut the area, asked for least invasive option but been told that the successful rate of such option is low). I'm totally utterly confused and anxious not knowing what to do and I hate that feeling. Your advice would be so helpful...

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    • Posted

      Did you have an MRI yet? Sorry if you said this but I couldn't see it in the above doing a quick scan. What examination did the surgeon do? if not ask for one and let the surgeon do an exploratory of the area then discuss what is the way forward. Join the fb group ask others questions. The more information you have on this the better you can make the right decision for yourself. It is difficult when you are in the middle of it so take your time and get as much advice as you can even a second opinion if needed. Don't worry about the surgeon. If they are a good surgeon they will ubderstand and they will have a list of people they can pick from to slot in, in the case of cancellations. 

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    • Posted

      Received the call from the hospital today just before 5 o'clock about the last minute change (!?) of appointment time - instead of midday I need to come now in the morning (as the surgeon who I know will have a long few hours operation which they want to start on the time given for my procedure). I was reasonably calm today and was preparing my mind for the operation, but after this call about the changes anxiety started again and it's quite strong. Would it be ok to postpone the operation if instead of the surgeon who promised that he will be performing the surgery might be someone else who I don't even know? Will they give me another appointment to see the surgeon which I know if I won't agree with the changes? I'm confused and shattered now, the procedure schedule for tomorrow, still not sure that I'm doing the right thing with almost asymptomatic fistula. Should I delay? It's a solar eclipse tonight too, heard that it affects health too

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    • Posted

      It sounds like you could do with some help. How about going to speak to your doctor. tell them how you feel and perhaps they can deal with the hospital for you?
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    • Posted

      Hi! I had an abscess in Sept 2015, I had it drained then they put a wick (packing) in the wound.. It healed too quick on the outside before the inside healed and I had to have the wound made larger so it could be packed every day until it healed. It healed by end of Oct 2015, and was ok,, then last year a tiny hole opened. I stopped eating sugar all was ok but lately the hole opened again I think it's a fistula but don't want surgery. I can feel a tiny tube underneath my scar which I think is the tunnel of the fistula. It drains only occasionly. I don't want the surgery affecting my life, should i leave it alone? I bath all the time I have a little drainge only drainage after being to the bathroom.

      I am 38 and female, it makes me feel dirty and manky, I am scared the surgery will be a botch job from what horror stories I've read. A seton sounds horrific and dirty. 

      I am slim, I ride, cycle, fell walk and conquered many mountains. I don't smoke or drink alcohol. Can't understand why!!!

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  • Posted

    MMartn,  your post is interesting as I am in a similar predicament - I have a small sinus tract which formed after an abscess was misdiagnosed. I have been told it is a fistula as the channel can be felt,  but I have yet to have an MRI. As it is relatively asymptomatic  (it feels like a little spot which flares up & feels sore occasionally) I was advised to leave it alone for a while to see what happens. Like you I have read horror stories of operations that have gone wrong so understand your anxiety. I agree with others on this thread that you should give yourself time to decide and go back to the surgeon & ask all the questions you need.  In my case I am going to go back in the autumn for some further investigations & discussion,  before I decide what to do,  as in the long term these things could potentially get worse. Good luck & let us know how it all goes for you. 

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    • Posted

      Hi! I had an abscess in Sept 2015, I had it drained then they put a wick (packing) in the wound.. It healed too quick on the outside before the inside healed and I had to have the wound made larger so it could be packed every day until it healed. It healed by end of Oct 2015, and was ok,, then last year a tiny hole opened. I stopped eating sugar all was ok but lately the hole opened again I think it's a fistula but don't want surgery. I can feel a tiny tube underneath my scar which I think is the tunnel of the fistula. It drains only occasionly. I don't want the surgery affecting my life, should i leave it alone? I bath all the time I have a little drainge only drainage after being to the bathroom.

      I am 38 and female, it makes me feel dirty and manky, I am scared the surgery will be a botch job from what horror stories I've read. A seton sounds horrific and dirty. 

      I am slim, I ride, cycle, fell walk and conquered many mountains. I don't smoke or drink alcohol. Can't understand why!!!

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  • Posted

    MMartin, I would say go for the surgery.

    I am exactly the same case as you 46, three kids, athletic and otherwise healthy. I also have my own business and I was scared as hell to operate.  Really SCARED. But it was nothing difficult realy, I swear.

    I was diagnosed with fistula a couple of months ago and after researching everything, I decided to go for a draining seton placement (1st of August).

    My fistula could not be cut off as it is mid-high transphicteric.

    Having the draining seton however, gives you some peace of mind, since it drains and no abscess accumulates.  If you don't do it you just don't know what happening with the fistula (it may be creating branches inside....).

    So the op was nothing for me.  Next day I was up and running (really) as I jogged and played basketball with my kids. That was a bit extreme but I realy did it.

    Now I am wating for the next stage in October (propably a laser surgery). Or I may have to keep the draining seton a bit longer (keep in mind that this improves the fistula long-term).

    Good luck MMartin! Keep us posted.

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    • Posted

      Well done for you! This is the first time I have ever heard anyone say this. I am guessing your wound must have been small and you have a very high threshold for pain? For the majority of us this is not nothing. The pain of 5 operations is the worst thing I have experienced in my life. Good luck with the laser surgery, would be great to hear how it goes.
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