Advice needed | Living with an anal fistula

Posted , 93 users are following.

Hi guys, I'm new to this site and have just got back from the hospital.

I had an external abscess around Christmas time which my doctor prescribed a course of antibiotics rather than drain it. The abscess popped after 3 days and I assumed I was on the mend. However the abscess bursting has caused an anal fistula.

Since the new year I have been to the doctors 8 times, spent 8 days in hospital had and MRI and finally day surgery 3 weeks ago.

The surgeon took out 2/3 of the fistula but could not take out the rest due to it's position within the muscle and fear of incontinence. Completely understandable. he placed a cutting seton in (I think that's what it's called) but this came out 5 days after surgery. I called the hospital and they said to wait for my appointment 2 weeks later (today).

My surgeon says the seton shouldn't have come out already as there's no way it could have worked so quickly. He's also not sure why it came out. I did barely anything for the first week after my surgery so there;s no way I caused it to come out.

Anyway, I'm back on the waiting list to have it all done again. No idea when that will be though so quite frustrating.

What I'd like is some advice from anyone if they are able to offer it. My life has been pretty much put on hold all year and I've not done most of the things I normally would. What advice do you have for living with a fistula? Should I change my diet? Can I drink alcohol? (haven't touched a drop since Christmas just in case), How much can/should I do physically? My sex drive and confidence are out of the window since all this has happened. With the leaking from the fistula and having to wear pads, I've also lost my dignity.

I'm really down in the dumps and could do with some help. I'm a 38 year old male business owner. I'm usually very outgoing, socially and work wise. I usually love meeting new people and doing all sorts of things but now I spend my days working from my bedroom. My wife and daughters forget I'm here.

Any help or advice will be very, very welcome.

Thanks so much for reading if you got this far rolleyes

0 likes, 236 replies

Report / Delete

236 Replies

Prev Next
  • Posted

    No fun at all fistulas!!!!! Mines been around for two years two mris camera up bum 6 months of seton and three ops later I'm now waiting for another op!!! I enjoy the good days and stay in for bad days it's really hard to plan stuff around it x but least we still here I just keep thinking it's bad but could be oh so worse x I wonder how u getting on now??? Please feel free to message me for any real details x it's hard to talk about it cause unless u have one u just don't realise how awful it actually is
    Report / Delete Reply
    • Posted

      Hi, just read your blog, I'm having the same problems and nightmare as you, I've been living with a fistula for nearly two years and just wondering how you are getting on. Are you feeling better now and has the fistula dried up.
      Report / Delete Reply
    • Posted

      Hi there X no still waiting for op!!! Gonna be in four weeks X although I do feel a lot better actually than I did X still having symptoms that need to be fixed but least I feel more human at the moment X how are u doing with yrs???? They are tricky things to fix and it all seems to take so bloody long??
      Report / Delete Reply
    • Posted

      Hello again, it sounds like yours is a bit worse than mine, I had

      Surgery a year ago but it didn't work, now I have a little bit of drainage and leakage after I go to the bathroom, waiting for another procedure where they will use a seton, my surgery has been cancelled three times this year, hospital has no empty beds, it's incredible, I have no pain only a little pus which can be a nuisance.

      Did you have problems with a seton stich and was it painful, I appreciate your quick response and wish you all the best

      Report / Delete Reply
    • Posted

      Seton was slightly annoying and painful if u catch it but u learn to live with it X takes a little while to settle though X I only had mine for six months X they seem to take forever cause the surgeons all wanna seem to pass u on elsewhere and then make u wait forever! Frustrating!!!! Nearly been a year since my last surgery!!! And I've been basically waiting to get sorted again since then!!! Due to retiring surgeons junior doc strikes bla bla X

      I do wish u luck X is it rv fistula u have??? Glad u not in pain I had awful fatigue n muscle cramps too but they finally seem to be subsiding now X all the best with yr surgery X make sure u rest up X x

      Report / Delete Reply
    • Posted

      Seton was slightly annoying and painful if u catch it but u learn to live with it X takes a little while to settle though X I only had mine for six months X they seem to take forever cause the surgeons all wanna seem to pass u on elsewhere and then make u wait forever! Frustrating!!!! Nearly been a year since my last surgery!!! And I've been basically waiting to get sorted again since then!!! Due to retiring surgeons junior doc strikes bla bla X

      I do wish u luck X is it rv fistula u have??? Glad u not in pain I had awful fatigue n muscle cramps too but they finally seem to be subsiding now X all the best with yr surgery X make sure u rest up X x

      Report / Delete Reply
    • Posted

      Seton was slightly annoying and painful if u catch it but u learn to live with it X takes a little while to settle though X I only had mine for six months X they seem to take forever cause the surgeons all wanna seem to pass u on elsewhere and then make u wait forever! Frustrating!!!! Nearly been a year since my last surgery!!! And I've been basically waiting to get sorted again since then!!! Due to retiring surgeons junior doc strikes bla bla X

      I do wish u luck X is it rv fistula u have??? Glad u not in pain I had awful fatigue n muscle cramps too but they finally seem to be subsiding now X all the best with yr surgery X make sure u rest up X x

      Report / Delete Reply
    • Posted

      Seton was slightly annoying and painful if u catch it but u learn to live with it X takes a little while to settle though X I only had mine for six months X they seem to take forever cause the surgeons all wanna seem to pass u on elsewhere and then make u wait forever! Frustrating!!!! Nearly been a year since my last surgery!!! And I've been basically waiting to get sorted again since then!!! Due to retiring surgeons junior doc strikes bla bla X

      I do wish u luck X is it rv fistula u have??? Glad u not in pain I had awful fatigue n muscle cramps too but they finally seem to be subsiding now X all the best with yr surgery X make sure u rest up X x

      Report / Delete Reply
    • Posted

      Hi, I left it and all fine now. I have had a few recurrent episodes over the years due to straining/ heavy lifting or constipation.  I must have damaged the muscles there and can cause it to flair up again if I get constipated or strain. But if I manage it properly it heals pretty quickly each time now. PETRIFIED of surgery and it just seems to cause people more problems in the long run. I think every situation is different but I have learnt how to manage mine and am for the most part happy and comfortable. Antibiotics, epsom salts and hot hot baths seem to heal me up sometimes within a week! how long have you had yours and has it ever healed?
      Report / Delete Reply
    • Posted

      I had an abscess, had it drained and then packed every other day, but it healed too quick on the ouside and i was left with a 0.5cm hole so had to have it done again, now a year later, a ting hole has appeared on the middle of the x shape incision that was made to drain the abscess. I thought it could be a fistula but at checkup all ok. I am scared of surgery due to incontinence. I am sooooooo worried. 
      Report / Delete Reply
    • Posted

      I'm currently waiting for an op what I'm finding frustrating is not knowing why this has happened in the 1st place ive just done 60 days on anitbotics and discovered a nice hole in between my Virginia and rectum as well as the abesse on the bum cheek. Also I've not really been given any options other than an op ive had pain since January 16 but the lump didn't appear till September

      Report / Delete Reply
    • Posted

      These things can happen for any number of reasons. My MD ruled out crohns and IBS...so mine...like many has no known cause. i wanted to share that i had a sore spot deep in my bum (felt like a bruise or a pulled muscle) for a year before the fistula developed...so your experience doesn't sound unusual. Also know that a lot of women will get fistula involving ones "virginia"...happens often after childbirth from what i've read.

      I had a cutting seton surgery about 12 years ago and diidnt have any new problems for a decade when it recurred and appeared to heal so i didn't bother to do the surgery 2 years ago...but damn if i didn't start to feel that sore spot again a few days ago...if my skin starts to itch i know it has recurred a second time and i will have to bite the high cost-sharing piece in the US to get it done...and then six weeks of waiting for the damn thing to heal....but it's mostly an inconvenience...and an annoyance.

      Report / Delete Reply
    • Posted

      Hi

      I had a consultant appointment back in January for a possible fistula. He wasn't worried about it (didn't want to operate incase he made it worse and said it could just be scar tissue from the abscess). But the lump is still there and although it doesn't hurt and there's no discharge or anything it bothers me every now and again!

      Sitz baths help at the moment.

      Do you think I should go back to my GP or is it ok to leave it there...not quite knowing what it is...

      Report / Delete Reply
    • Posted

      Hi,

      its difficult to know what to do for the best isnt it, I suppose if it's not causing you any problems then leave it and carry on with the sitz baths but if it starts to feel very sore or lump gets bigger or you get a fever and feel generally rubbish the go back to consultant. That being said you could ask for a second opinion. 

      Take care

      Report / Delete Reply
    • Posted

      I wish I'd asked more at the consultation! I was pleasantly surprised when he said he didn't want to operate and that he wasn't worried that I just left it at that.

      I'm hoping it is just scar tissue that get irritated now and then but would love to know for sure.

      I might look in to a second opinion - thanks.

      Report / Delete Reply
    • Posted

      I've had Clarithromycin & Flucloxacillin, I've had consultants say they don't work to clear abscesses & fistulas up but when I've been feeling rubbishing running a temperature my dr has given me them and they have helped

      Report / Delete Reply
    • Posted

      Hi matthew, so sorry ive not been onto this site for ages. How are you doing? My gp gives me flucloxicillin but to be honest I'm not sure if they work and taking them for too long isn't good. I'm still learning to live with mine which comes and goes but im still feeling that is rather manage it myself than go through pointless surgery only for it to return. And actually it is much easier now and ive come to terms with the fact that this is how my life is now. How have you been getting on? I wonder if anyone has ever got rid of this for good either with surgery or going it alone??

      Report / Delete Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up