F**king fistula

[Riddlediddle]

Need to vent as I think my family are fed up with my constant moaning so I thought this would be a good place to come to get it all out.
After a nasty perianal abscess that was surgically drained I was then one of the unfortunate people (only happens to 1 out of 10 according to the surgeon) to go on and develop an anal fistula. These things are evil. I've had to have a massive seton stitch put inside me as the fistula runs directly through my sphincter muscle so would cause incontinence if removed. The site of the wound is raw and constantly wet from not only the liquids coming out of it but also all of the antibacterial gels that I'm having to put on it so it doesnt get infected as it sits literally 1mm from my arsehole! I cant just have a s*t anymore without a 40minute bathroom trip to clean and dress the area to surgical standards!!! I cant sit down and I haven't worked in 3 months. How can something so small cause so much disruption to one person's life. I'm so fed up of it all and no end in sight in the near future. F*k you fistula!!!!! And breathe......

I'm not suffering now but I've had 2 perianal fistulas in the past which are a direct result of Crohn's disease. As my fistula didn't look like it would heal on its own I was put on a biological drug called infliximab. It healed within 2 months.

Infliximab and similar biologics can be great at healing fistulas. I'm not sure if a consultant would prescribe them if you don't have inflammatory bowel disease (IBD) but it's worth checking the nice guidelines and asking your dr. The patent has recent expired for these drugs so there are bio similar drugs on the market now which are much cheaper so definitely worth an ask.

Good luck

My just staryed from pure bad luck of getting a perianal abscess that then turned into a fistula as the abscess was so far gone (originally got given antibiotics for it but they didnt help heal it at all). I have asked numerous doctors and nurses why I got the abscess in the first place and they said it could be a million reasons but likely a small tear had happened while I had been recently constipated which then filled up with infection and got out of control!

No idea how DS started, or when. Was sheer chance I noticed as he's not of an age where I see him naked much.
Current theory's for them are either Crohn's or a sweat gland disorder. But he's coping ok so far thankfully.

Hi Riddlediddle
I've been reading your posts from 2019 and I'm in exactly the same boat. I've been waiting nearly a year for my operation. A year with this constant agony. My seton placement op is on th 28th Nd I'm just looking for some hope. I have no idea what to expect from the op. At the initial consultation the surgeon barely looked at it so it feel like he's going to go in blind. Do they use a camera? Do they do tests beforehand?
I'm really scared there's more going on down and I'm worried they won't pick it up. This is f@#king 😖 awful.

Hey @Bethro so sorry to hear you are going through this. So you've had a fistula and you're waiting for the seton to be put in to move the fistula out of your sphincter muscle? If so that's exactly what mine was. To be honest no-one explained anything to me about what was going on, I didn't have any pre-tests and I really struggled to get the consultants to explain anything to me. All I would say is be prepared to keep the area super clean following the op - stock up on all the bits and bobs that you'll need for this (e.g. Cotton wool pads, etc). Do you have nay idea when your op will be?

Hi again and thank you for replying.

I'm having my op on the 28th of June... really nervous about it.
I have no idea what's caused this. I had a skin tag or some kind of mass in the area back in 2017 which was infected. My GP didn't know what it was so sent me to the hospital to get it looked at. The Dr there gave me antibiotics and sent me on my way. I've had minor flare ups since then but nothing that really warranted getting it out for another audience. Fast forward to 2021 and I had a huge flare up. I could barely walk. So I went to the GP who miraculously saw me face to face or rather.....yeah um... anyway...he commented and said "wow thats absolutely huge" and then showed me the letter they had received in 2017 saying it needed to be referred for removal, which obviously never happened. He referred me to colorectal and said to go to a and e if the pain was unbearable. Well it was unbearable so I took myself to a and e the next morning.
Well I felt raped to be honest. The doc at a and e really hurt me. I was in tears and he stopped the examination saying he hadn't done a proper examination. He seemed annoyed and said that I needed a camera investigation and said I should ask my gp to escalate the referral.
I think this was in the June a I saw the surgeon in September. He just had a quick look and diagnosed the fistula. They're going to remove part of the skin tag and place the seton and then, I think, remove the rest of the tag at a later date. Ive had no clear indication of time frames. Just that it'll be under general anaesthetic and will most probably be a day case. It's now a year later and I've had no releif from the pain ever since. Creams don't work, steroids don't work, antiinflamatorys don't work, opiods don't work.
I've had problems with my bowels for ages I.e. needing to go straight after a meal, always loose often like water or rather pure acid (sorry TMI). I just don't feel like any of that has been considered.
I don't know where this fistula begins but I suspect the opening is in the skin tag, and I feel like it fills up and gets blocked which is absolute agony.
Apart from that, as you've described, there's the constant moisture and burning from the "acid" and that pain goes right up inside as well.

In desperation I've naturally consulted Dr Google and all of this point to crohns or perianal crohns. Especially with the extra earlobe down there.

So yeah I'm scared they're going to chop up my hooha without knowing what's actually going on.
I'm hoping that they'll be able to see while they're in there? If they use a camera to see what they're doing? If there's undiagnosed IBD would that not affect my recovery?
I know I should ask the Dr, but I'm sure I'm not the only person who will say Dr's don't seem to take kindly to being second guessed...

Sorry for the long post, I just needed to put it all down somewhere. I really am scared 😱

And thanks again for listening.

Have you recovered from yours now?

^ This. Sitting on the loo in the middle of the night yelling "FUUHUUCK" and throwing the tube of useless cream across the room, wanting to pull my own hair out. Then bursting in to tears. There should be a word for this level of frustration.

Hi OP. I had exactly the same as you - although, I completely refused the seton having read so many horror stories about it.

I had a fistulectomy, and am pleased to say that 10 years later, aside from an awful scar (it's huge!). I was warned about incontinence, but haven't experienced any (of course not saying you wouldn't). I was also diagnosed with Crohn's Disease, have you been investigated fo IBD?

It is worth speaking to your GP and asking for a referral for a second opinion - you shouldn't have this pain in your life

My friend had one for years that started the same way as yours and had several operations to try and fix it only for it to reappear again she had a Seaton drain in for years to and it really was adversely effecting how she lived her life in the end she pushed and pushed for a referral to this specialist in Liverpool (I think) whose area of expertise was non healing fistula and in the end he finally sorted it out for her.

Hi, I also have a fistula but the area it’s in means they can’t do the cutting stitch to repair it (or they risk rendering me incontinent) so I have to keep getting the seton stitch replaced every 5 or so years when it wears out. I just wanted to ask have you had an MRI? Every time I have had an issue and when I got diagnosed they did an MRI to see exactly where it lies and if it is close to important muscles.

I can sympathise with you OP. I suffered from an anal fistula for years. Mine was a traumatic one caused by anal rape. I seemed to never heal and it took ages for me to be able to say anything to a doctor and consent to even being examined there. Once I had the courage, I still couldn’t go through with a physical exam of any sort in that area, so the Consultant referred me to have a colonoscopy done with me under general anaesthesia. It meant I went to sleep, they examined me and I woke up with no memory. It was much the best solution and I was very happy to have found a doctor that understood my psychological limits.

So, from the colonoscopy they found where the fistula was and how big it was and went straight to the fistulotomy repair surgery, which was day surgery under general anaesthesia. That all went well but once the general anaesthesia wore off I was in terrible terrible pain. It took months for the wound to heal and then a few years before the random tightness feelings and odd twinges to stop.

But I’m now more than twenty years later and never had it come back and I’m fine down there now. So the surgery did work and has worked long term.

Your A and E doctor sounded horrific and clueless. I am so sorry you went through that. I have found having the seton put in made the world of difference. It’s pretty unpleasant while you are healing after the op (especially the first few bowel movements) but now I rarely get any pain and the leakage is only slight.

Hi Confused bubble
No unfortunately I haven't been investigated for IBD. I have suggested autoimmune disease to my GP because of a collection of symptoms and he shrugged it off. It's so frustrating not being taken seriously.

Just wanted to send lots of sympathies to you all - what an utterly miserable thing. And the sense of being out of control - of others deciding important stuff about your body without you being fully in the loop.

I do recognise this awful pain. First forceps delivery from mad Australian locum and episiotomy went into anus - months of agony.

Then massive collection of thrombosed haemorrhoids - total eye-watering agony.

It is so miserable when a totally normal and simple bodily function turns into a daily nightmare.

Aaaaw it's absolutely awful for you I really do sympathise. It really does impact on every aspect of your life and looking back now I can see what an utterly miserable and depressed person I was while going through it all. It was even just the little things like carrying wipes and creams around with me everywhere, always being scared to go to the toilet, not being able to be spontaneous at all and having to plan everywhere i went, always having to wear granny pants so I could wear a pad with them, etc. Fistulas really are horrific things.
Do you have a pre-op meeting where you have an opportunity to ask your consultant your questions and raise your concerns? I completely understand you probably dont though as I had only one 2 minute appointment with mine and no tests or MRI at all.
Please feel free to PM me and I'm more than happy to help based off my own experiences. I know it's hard but please try and stay positive xx

Hi again everyone,

3 days to go until my seton surgery and I'm no less concerned.
I was supposed to have a pre-op assessment phone call yesterday but the call never came....
Are they not leaving it a bit late?
Do I not need to have blood tests or anything before the surgery?
Ive only ever had general anaesthesia about 18 years ago in another country and dont remember any pre op tests so I'm really not sure if I should I be chasing them.
I mean honestly should I be letting them near me with a knife to have a fiddle if they cam forget something like a pre op assessment 🤔

Hi @Bethro
In my experience I didn't have any bloods done pre-op. I'd never had general anaesthetic before but a nurse just took my height and weight and asked if I had any allergies. I guess they only do more in-depth pre-op assessments if you have a high bmi or allergies that make you more of a risk. Good luck with it all and keep us posted x

Thanks for your reply Riddle,

I think I should ring them then because I do have a very high BMI and I'm on 2 different medications for hypertension, an issue with my liver enzymes 6 months ago (which has now resolved I beleive). So I'm a little nervous.

Having said that I'm probably just nervous for the OP itself and someone from the hospital will reassure me soon 🙃

@Bethro yes I agree you should give them a call, especially when they need to factor in your medication etc. All of my operations were fairly quick (approx 30 mins each time) so hopefully you will be similar and you won't need much anaesthetic. You will hopefully just wake up feeling like you've had the best ever sleep! X

Now I've calmed down I thought I'd let you know what happened.
The hospital dropped the ball and as result have had to cancel my operation because my estimated weight and height (telephone assessment) mean my BMI is too high. I need to lose half a stone before I can have the surgery and I can't lose half a stone in 3 days.
Had this been flagged up as an issue at any point I could have worked harder to lose the weight, but as I'm sure you know, excercise is pretty challenging with a fucking hole stuffed with glass in your arse.

I know its my fault for being so fat in the first place but I never imagined (stupid too) that it would mean my surgery would be cancelled after a 9 month wait.
I just feel like if they hadn't left the pre-op assessment until the last minute, or even looked at my file, someone could have warned me...
Devastated is not the word.

Aaaw @Bethro I'm gutted for you! Completely understand how deflated you must be feeling right now. Have you got a review booked in for a few months time to reassess you? If so use that as a deadline for your half stone weight loss. If you haven't got a date booked in then push them for one now as with how long the wait lists are they need to be working a good few months ahead with appointments.
Feel free to come and rant on here x

Hi @Bethro i am sorry to hear you are going through this. I have also lived through the joy that is a fistula and it it an awful thing. I had a fistulotomy last year and am now dealing with the fissure that the operation seemingly created. It is life consuming and I have struggled to work, socialise and just live normally but hopefully after a second Botox operation I’m on the right side of it now. Have you looked at the Facebook group abscess/fistula support for women. It was a wait for my membership to be accepted but it has been a lifeline for me! There are some amazing women on there and you can ask absolutely anything or just rant on a bad day.

Hey, I'm 2.5 years and three surgeries in with a fistula. It will improve and as the wound shrinks the leakage and soreness will reduce massively. Happy to answer any questions if helpful but obviously a very different experience for a male.

Surgeries are slow to come round but hopefully I'll have my last round before the year is out!

Agree with others that the Facebook groups are helpful especially the food and nutrition ones but once I'd hoovered up some practical knowledge I came off them as couldn't cope with other people's experiences!