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 
0 likes, 236 replies
AnalAbscess moosecraftsman
Posted
jeffwever moosecraftsman
Posted
Sounds kinda like my life. I have fistula with a seton placement. I have over 10 surgeries of draining and adding glue. It would still get infected or drain a lot with a seton. It's been 6 yrs of wearing women pads and using paper towels as second pad.I do have crohns disease but that is in remission. I was on Humira and I stop it because it was making the fistula worst when it's infected. MY GI wants me to get on remedcaid but i don't want anymore drugs. THE next surgery would be the flap procedure. IDk what I'm saying I just need help. I'm in pain and it drains a lot
AnalAbscess jeffwever
Posted
Sorry to hear this jeffwever, I had 5 ops in just over a year so really feel for you. There's lots of good advice in this forum. I have been abscess free for 5 years now. feel free to pm me if you would like to know more. Free advice. Kind regards
jeffwever AnalAbscess
Posted
v45355 AnalAbscess
Posted
Hi
I was treated for a perianal abcesses in 2014 and in September of this year it felt like it has returned. GP gave me antibiotics which seemed to help but I had an MRI last month to double check and the results came back last week. Looks like a fistula has formed 😔
I'm not being referred to a consultant but can't be seen until the end of January 2017. I'm in no pain but can feel a lump...I'm wondering now whether it's foolish to wait another two months. Do you think I should try and get seen privately?
AnalAbscess v45355
Posted
Hi
My abscess started in November 2009 and I was taken in 4 months later for emergency surgery. The thinking at the time was that you needed to be left until your abscess was just about ready to burst before they operate. Is this still the case? I am not a gp or surgeon but personally I think this is a mistake. By then there was more infection and to cut it all out they needed to create a fistula. I was in the UK at the time and it was my doctors fault that I did not see a surgeon sooner. You might not feel much pain at the moment but I would go back to your GP and push to see a surgeon sooner to find out what the thinking is these days. Also ask about keyhole surgery on the NHS there maybe a trial for this, it is supposed to be less invasive. I don't like to advise to go privately due to the cost but if your GP can't push you up the waiting list it might be worth investigating the private route.
Best wishes for a speedy recovery!
joshua33483 AnalAbscess
Posted
AnalAbscess joshua33483
Posted
I had 5 surgeries, 1st was to drain my abscess and place a seton in the fistula the surgeon created. The next 4 were to cut the fistula to try to move the seton through me because it was not moving itself.
Each surgery was performed 3 months apart, to give the wound sufficient time to heal before the next surgery.
It took at least 6-8 weeks before mine stopped draining and from what I read that is normal.
Pus and a little blood is normal. I used the shower head on the area regularly throughout the day not just for bm. Many people use sitz baths to make sure the area stays clean.
How is yours behaving?
I hope that is of help.
joshua33483 AnalAbscess
Posted
Had a fistula and I had surgery in June 23 2017 but I s till getting drainage it looks yellowish I been having the drainage since surgery day sometimes the drainage looks small in the gauze and other times looks bigger I don't know if it's normal
AnalAbscess joshua33483
Posted
Hello
I would say this is normal but if this is your first time and you are concerned, call your surgeon. If they are a good surgeon they will be happy to talk with you and put your mind at rest. Or make an appointment with your local nurse or GP to have them take a look. It will help to ease your mind.
My mantra is also to eat healthily. You may already do this but my advice is do it more. Eat as much veg as you can, carrots, romaine lettuce, celery, or drink vegetable juice, 80% veg, 20% fruit. If you don't take a multi-vitamin start taking one. It might help your body to fight the infection. Our immune systems need all the help they can get when we have an infection like this.
Let us know how it goes. Happy to answer any other questions. Get well soon.
Ouchhhhhh moosecraftsman
Posted
So sorry to hear moose, and I can relate to a lot of what you're going through. It's a hit as much physically as it is emotionally and to your confidence/sense of self.
I am about a week and a half post surgery for abscess and fistula...was not expecting fistula going into surgery, so it's been a rude awakening and hard to manage.
My work productivity is sapped, as is my mojo. It will get better (and at least abscess is healing) but not a fun road we are all sharing.
Update us on your progress!
tulip78 Ouchhhhhh
Posted
It was scary when I first got my abscess my GP said it is the size of a golfball, it appeared in a week!! Then I was on strong antibiotics for three days before emergency surgery, then I had the wound packed every other day for 4 weeks, It healed too quick on the outside so i was left ith a 5mm pocket so had to have it reopened and they made the incision bigger though there was no infection. It was packed everyday then for the next six weeks,, now a year later, i have a small hole right in the middle of the incision wound and a small hemorrhoid like lump right on my bottom. Think it's a fistula. sooooooo worried about incontinence. Read that they stick a probe through the fistula to perform the surgery - it sounds brutal and barbaric and what if the probe causes a false tunnel? Does the seton hurt? will waste come out through the seton and surely a big wound in your bottom is dangerous with lots of germs about.. I'm rather worried to say the least. And time off work again is worrying
I'd be devastated to be incontinent, I'd never go out
v45355 tulip78
Posted
Your initial surgery sounds similar to what happened to me back in 2014. MRI last month has shown a fistula so now waiting to see a consultant about what they want to do about it but there's a two month waiting list 😔
Are you being seen soon?
tulip78 v45355
Posted
I'm from the UK so I'll have to get an appointment with my GP then be referred for teatment. Hopefully I'll get an MRI done to see if I have a fistula..Are you from the UK?
tulip78
Posted
That's unfair that we have so many problems trying to get treatment, I'm finding it difficult to make a GP appointment
v45355 tulip78
Posted
Hi tulip78
I'm in the UK too. My flare up started in September and had to go to my GP a few times before I was referred for the MRI- this took about 6 weeks and then about another 2 to 3 before the results came in.
I'm panicking a bit now about having to wait another 2 months for the consultants appointment. Have made enquires to a local private hospital but have no idea how much that will cost!