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Advice needed | Living with an anal fistula

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moosecraftsman
moosecraftsman

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

236 Replies

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  • jamal43142
    jamal43142 moosecraftsman

    Posted

    Hi All,

    A few months ago I was diagnosed with an Anal fistula. At the time I remenber spending a lot of time on the web trying to find information and being very anxious, so I would like to share some info hoping it will help people out there.

    Following the diagnosis i did a lot of research and came accross the only one surgeron in the UK at the time that practiced what is called VAAFT: Video Assisted Anal Fistula Treatment. The treatment is very simple done as an outday patient and within 2 days I was back to work. It is minimaly invasive basically Keyhole surgery.It has been two months now and so far it is OK, hopefuly will remain the case.

    So I guess my message do research and enquire about VAAFT as it is now available in the UK and could save you a lot of pain...

    All the best!

    J.

    • AnalAbscess
      AnalAbscess jamal43142

      Posted

      Hi Jamal,

      Nice post. This has been available for a while and the NHS have clinical trials in the UK. Can I ask did you have this done privately?

      Any information appreciated.

    • andipot
      andipot jamal43142

      Posted

      HI there, where in the uk can you have this procedure. Many thanks??

  • rk02121
    rk02121 moosecraftsman

    Posted

    Glad to read all the painful stories and sorry for all of you. I had a perinial abscess during 2009 got a surgery to drain it. the same problem recurred many times but was taking some homeo medicines and getting alright but recently got a sewere one and looks like it got into a fistula. got drainage surgery again things are cleared but been advised by a doctor friend that there is a advanced laser surgery which dont involve any pain and recurrurence is almost nil. do anyone heard about it and just trying to meet a colrectal specialist to enquire about this
    • AnalAbscess
      AnalAbscess rk02121

      Posted

      I think you are talking about keyhole surgery, called VAAFT. If you are in the UK ask your GP about clinical trials for this. You GP should also refer you if you want to go private.
    • rk02121
      rk02121 AnalAbscess

      Posted

      I live in India. I read about VAAFT but not sure is that the same laser thing which i am talking about. As of now i haven't consulted any specialist so far and thinking to get the fistolography test done as advised by my recent surgeon and see what the report says. I am little hesitant to meet a specialist in a corporate hospital as the process is more commercialised in India at the moment like they come to know that a patient is covered with a private health insurance and they do things which are not required in real..

  • jacob72118
    jacob72118 moosecraftsman

    Posted

    Im 16 and i was diagnosed with crohns disease at 13. Since then myblife has been hell. I am reasonably popular at my school and im really scared to talk to anyone about my condition. Last year around this time i had a horrible flare up. I then developed a large absess slightly up from my actual anus, and it wasnt until after about a month of it popping that I noticed the blood and pus in my stool. After living with crohns for so long and believing to have beat it i was hit with this. And i hate everything about it. My fistula isnt painful anymore, and i barely notice it. But i have to put a pad of some sort over it because of the incontinence of the fistula. I havent even told my mom about it. Ive been scared for about a year now and i get scared every time i remember it. I am just very glad that i found a place where i can go and actually talk about this. I doubt ill be back on here until i feel the need to talk again. But im even intimidated to engage sexually with my girlfriend for fear of my fistula. Ive lived with it for a year and i still play football. I still go out and party eith my friends. But i have just learned to cope. I wouldnt wish this on my worst enemy. Im not even going to attempt surgery after hearibg so many horror stories. Its so good to realize im not the only one.
    • AnalAbscess
      AnalAbscess jacob72118

      Posted

      Thanks for sharing your story. Do many of us feel the same. It is so difficult to talk about. You sound like you have your head on straight though smile you are right these operations can be tough. But saying that I would still advise you to go speak to your doctor if you can. You don't have to do anything they say but at least get yourself checked.

      My question to you would be how would you describe your diet? Healthy/unhealthy? If not so great then I'd advise eating as healthily as you can just for a few months to see if that helps any.

      Would be good to hear how you get on. There are many people out there with the same condition. Thanks for sharing. Wishing you a speedy recovery. Take care

    • tulip78
      tulip78 jacob72118

      Posted

      Hello!

      Sorry to hear about your crohns / abscess / fistula. They are nasty things but certainly treatable. If I were you, I would book an appointment with your GP or speak to your Crohns doctor. Even just to put your mind at rest....

      I too have had an abscess and fear i may have a fistula, GP said I haven't but on antibiotics. so fingers crossed all will be ok.

      There are many horror stories, I agree but there are those who have had sucessful surgery, there are new surgeries and treatment now for fistula, all can be discussed with the surgeon before an op.

      Also I would try altering your diet, diet has a huge impact on the bowel and crohns. Try improving your diet for  awhile

  • michael90139
    michael90139 moosecraftsman

    Posted

    Hi guys I had pain in the anal area 6 weeks ago and went to the GP he said I had a perianal abscess and gave me an injection in the area and tried to drain the puss. The next day it was back so I rushed back to the GP and had two more injections and more drainage. It was so painful. It still hurt a few days later so I went back and he sent me straight to the colrectal surgeon who said you need to lay these things open to drain them properly. He operated on me within a week. 

    It has been four weeks since the operation and I would take a bath after each bowel movement with salt water to keep it clean and I had 10 days off work in total. I go back to see the surgeon next week. It seemed to be healing properly until a few days ago and I noticed a small bump at the anal opening which seems it may be a fistula from what I have read online. I'm hoping that it's not obviously. 

    For people suffering from it the emotional toll is hard and the healing process so long, but I am trying to stay postive.

    • sian61733
      sian61733 michael90139

      Posted

      It is a hard one to go though identify found my lump back in September I'm still waiting for my op and to have investigation to see what the cause of it is on top of this I've been so unwell with head cold that's latest almost 14 weeks and I had Thursh of the mouth had a nightmare getting dressings from the gp sergery my gp has been brilliant it's just all the other services that are letting me down I'll admit I've been so low and feeling susidal as a result of this

    • rk02121
      rk02121 sian61733

      Posted

      sian,

      sad to hear your experience but believe me nothing should be susidal, have patience i know its easy to say but i have also gone thru such situations but its all about the way our attitude and how much we want to bear for ourself. Everyday will be different in life similarly its health too so no need to worry just have patience hope keep fighting back it will get vanished one day.

    • sian61733
      sian61733 rk02121

      Posted

      I know I wouldn't act on my feelings as I'm a single mum just have days where I feel so desperate and In dispair think the worst part about all of this is not knowing the cause behind it ... I am strong and will keep going just get fed up

    • michael90139
      michael90139

      Posted

      So I saw the surgeon today and he says that the area gets very low blood flow and is notoriously hard to heal. He said he didn't think i had a fistula and in fact the first surgery 'layed open' a small fistula, but he did zap the wound with silver nitrate (I think?) which stung a bit. Then said it should heal fine and he'll see me in 6 weeks. I'm in a much better frame of mind the past few days. In fact I even have my routine down after a bowel movement to 10 minutes to clean and redress the area. I think staying postive and walking to increase blood flow is crucial to healing, as well as diet to keep stool movements soft and drinking lots of water.

    • AnalAbscess
      AnalAbscess michael90139

      Posted

      Great to hear to are feeling better Michael and very interesting to hear your story, it will s different for each person. Please let us know how you get on. 
    • michael90139
      michael90139 AnalAbscess

      Posted

      Up date as of 19 Jan which is about 7 weeks after surgery. I had a little bit of pain in the area and a little bit of pus again, but no swelling. I've felt great for a couple of weeks so I hope this isn't a setback. I see my surgeon on Feb 13.

    • michael90139
      michael90139

      Posted

      I saw my GP who put me on antibiotics and squeezed more pus out of the area after I told him I was experiencing more pain. Then I got into see the colorectal specialist earlier today and he said that's unusual and that I may have had another abscess. I asked him if I needed a scan and he mentioned he might have to lay open the area again. He then changed his mind and has sent me for an MRI. 

      I think after going through all of this in hindsight I would've got at MRI straight away to minimise the possibilty of further surgeries. Anyway now I have to wait to get an MRI then see what the specialist says.

      I have good days and bad days. The emotional toll is huge as you can't see yourself getting better. My friend told me the body wants to heal so have faith in your body. It's good advice.

    • michael90139
      michael90139

      Posted

      It's been about a year since I logged on here as mentally I needed a break to take my mind of it all. I had thought all my ordeal was over but recently I took antibiotics for an unrelated matter and I broke out with a rash all around the anal area. I was freaked out and my GP said it's nothing to do with your abscess history and gave me hydrozol. Well 7 days later I have another abscess. So deflating. I'm off to see another colorectal doctor tomorrow as I've moved interstate from the last one. 

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