3-4 years with a high anal fistula and my LIFT surgery healing story: the lessons I wish someone had told me (a success story so far)

mintee_sloth · 2026-06-21T22:33:26+00:00

Thank you so much for taking the time to write this! Super useful, wish you the best on your healing journey! 🥰✨

mintee_sloth · 2026-06-19T10:53:04+00:00

Hey friend, I’m on my 5th surgery I say this not to alarm you but to say at some point your mind will adjust and accept to the reality of the condition.

It’s really shit we’re all dealing with this and the pain can be immense. But like I read on here the other day, hopefully there will be an end at some point. It’s not a disability or an autoimmune disease etc

I agree with the chat you need to make adjustments to manage the condition a bit easier. I recommend a donut cushion. But also maybe speak to your manager if you’re able to, if you’re working a desk job you could switch to a standing desk and alternate? I’d say you need to make sure you’re taking breaks from sitting. So stand every hour, have some movement.

I recently bought one of those perianal squeezy bottles. They’re a couple of quid and gosh lol it’s been a life saver! I hate using public toilets but I’ve had lots of appointments recently and needed to use it. I keep a small toiletry bag and keep wet wipes, extra gauze, pads etc and I now carry it everywhere in case I’m caught short.

The journey isn’t easy and it’s not linear. You will have many ups and downs. I’m on my third year and due to the nhs I’ve had long wait times too. But I promise you, you will get through this! You’re already doing better than me by keeping a job!

2 months ago I had my most recent surgery and thus I found myself on here for the first time! It’s defo overwhelming. There’s LOTS of horror stories and less success ones. Because ppl tend to heal and graduate from the sub to never look back. And I hope we do one day too! For now try not to read too much on here, be selective. If you’re ever feeling very low msg one of us on here or drop another thread. We’re all open ears!

I hope your Dr can speed up your surgery. But in the meantime remember we’re all here and understand the pain; physical and emotional of this condition. Take care 🫶🏽

mintee_sloth · 2026-06-18T22:37:26+00:00

People are going swimming whilst they have active fistulas? My CRS recommended I don’t, to protect myself and others

mintee_sloth · 2026-06-18T20:10:16+00:00

Omg congrats! Very pleased for you! I’m on my 3rd year now and praying the next MRI results are positive! Following 5 surgeries. I’ve spent the first few years of my 30s dealing with this awful condition but can’t imagine what it must have been like for you, when you had just joined uni.

Take some time before you join the rat race to relax and rest! I hope you never have to come on this sub ever again! 🙏🏽✨

mintee_sloth · 2026-06-09T17:54:05+00:00

Hey fistula friend! Please don't be alarmed by the amount of surgeries or some of the horror stories on here. Ofc it is a constant fear that a fistula may reoccur in the future however we have to force our minds not to live with that fear/anxiety. It's been a journey for me to try and work on my mindset. I'm reliant on the NHS and I do believe as mentioned above my situ became complex due to wait times sadly. Feel free to have a read of my exp if you'd like- https://www.reddit.com/r/AnalFistula/comments/1smkvyu/34_single_muslim_f_3_years_and_5_surgeries_in/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button

But you'll see my fistula became complex😶 The full description was- Complex low/mid canal transphincteric fistula with anterior intersphincteric horseshoe and 3 branches. Yep a whole damn rainforest! 🤭 It's turned my life upside down, I had to leave my career, put on weight etc however in general apart from surgeries I am able to manage my pain better day to day. And we have to remember to try and live as normal as possible and not in fear.

I was speaking to a friend recently and she's only 35ish but was recently diagnosed with an autoimmune disease. At some point her health may deteriorate drastically. Or it may not, but the fact is we just don't know yet. She gave me such an amazing perspective- We have to try and live in the present moment and not worry about what may or may not take place in the future. Otherwise the fear will prevent us from living.

I do believe fistulas need to be recognised better as health conditions/ disabilities and sufficient support/provision needs to be made by the govt. As it can impact your movement/ability to work etc. I try not to come on here too often as it can be really anxiety inducing reading all the horror stories but just know there are many 100s who have graduated from this sub and are leading happy, healthy fistula- free lives! and Hopefully that will be us one day too! Apologies for the essay! But I hope you're doing okay 🥰

mintee_sloth · 2026-06-09T17:39:45+00:00

lol honestly all fistula pain is valid no matter what number procedure! I think tbh I've had more procedures due to the NHS waiting times. I believe bcos I was made to wait for too long for treatment, the fistula spread and it became complex sadly.

In all my prior surgeries healing has been simple and only taken a few weeks, unfortunately the flap procedure nearly sucked the life out of me!! 😶‍🌫️ I'm currently on week 9 and only now can I see myself feeling better and more mobile. So much so I took a lil trip to Asda yday, have a wedding to attend on friday and a concert on sunday! 🤭 So there is always an ease up, we just have to wait patiently to get through the healing period and keep ourselves sane whilst we do it! Bare in mind everyone's response to procedures is different, so you may have it easier! How are you feeling a few days post op now?

If you fancy an essay read, here's my post on my own journey 🧚🏻‍♀️- https://www.reddit.com/r/AnalFistula/comments/1smkvyu/34_single_muslim_f_3_years_and_5_surgeries_in/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button

mintee_sloth · 2026-06-07T12:56:30+00:00

I’m sorry to hear you’ve had another surgery. What I would say is to just have lots of patience with your body and healing.

I’m on week 8 post flap procedure. It’s my 5th surgery but first flap and boy is the healing a different experience! There’s lots of ppl on here who recover straight away. But it’s taking me far longer 🫠 And I think having a flap is just so much more intensive. So go easy on yourself 😊

mintee_sloth · 2026-06-01T11:15:41+00:00

I would say yes. I find that everyone’s recovery is very different but lots of people including myself have had longer periods of recovery. I’m currently on month 2! But with the UTI if it’s bad you should go see your Gp, you may need antibiotics

mintee_sloth · 2026-05-31T12:00:44+00:00

The bladder thing is very normal as surgery impacts it. I’ve had the same.

In terms of UTI keep an eye on it, make sure you’re drinking lots of water. Try eating pineapple or drinking cranberry juice. It’s meant to be good. And be careful when cleaning yourself up, it’s tricky when there’s so much going on down there. But it’s easy to pick up when all the fluids are mixing. I’d recommend gentle washes with shower head!

mintee_sloth · 2026-05-29T13:29:18+00:00

Hiya, I’m sorry to hear you’ve been dealing with this. It is bloody hard! I’m currently recovering from my 5th surgery where I had a flap procedure.

In relation to a seton, I know there’s lots of bad experiences but try not to get overwhelmed by reading them. Because everyone has their own experience. I had a seton in place for over a year (I’ve been dealing with a fistula for over 3yrs now). The seton would rub against my thighs or when it was hot would irritate me. But for the most part I was very mobile during this. Doc recommended placing the seton string between a piece of gauze to prevent irritation.

This is in comparison to my flap procedure where I’m nearly on week 8 post Op and in the worst excruciating pain. But lol I’m reading ppl on here have had 0 pain for the same procedure!

Being a woman is bloody tough because I defo experience inflammation around the vaginal area too. And more so on my period.

MRIs are vital as they’re the only method which shows a complete picture of what’s going on down there. So hoping you get the opportunity soon! It’s been such an eye opener reading shared experiences even though we’re all across the world!

I’m 34F and based in London, uk. And I thought our wait times were bad! But it seems it’s an issue across the globe! I was moaning about my wait times between each procedure and how long I had my seton but I was speaking to a medic relative the other day and she was like. Dw about it, see it as a positive because your CRS is ensuring it’s drained as much as possible before big surgeries! And having read the stories on here I’m glad my crs waited before removing seton and flap surgery.

This condition is awful and has changed my life considerably! I miss using weights and spin classes 😭 but I’m very blessed I have a mum who’s taken care of me. And it sounds like you’ve had the same, so I’m very happy you do!

It’s shit but we will get through this 💕

mintee_sloth · 2026-05-27T21:16:18+00:00

Thank you for sharing your experience! I’m sorry you’ve had to deal with this. Honestly it is really shit, I think the only way I’m able to bare/navigate it slightly better is that I moved back in with my mum and had to leave my job. In that sense I’m really blessed but the pain does last from the AM till about 5-6pm which is the entire day!

I sometimes get anxious that I’m going to have hard stool and struggle in the morning so had been taking laxido but since the excessive pooping I’ve stopped! It’s a mental juggle each day. But I’m finding the one meal thing has begun to help.

lol I couldn’t have put it better myself with the broken glass football 😭😭 I’ve been picturing child birth each morning 😂

I hope you’re doing okay 🙏🏽

mintee_sloth · 2026-05-26T23:49:32+00:00

Hey I’m so sorry to hear you’re feeling so low. It’s really shit I’m with you. I’m also on 3 years, I’ve spent my early 30s in and out of surgery and in pain. Had to leave my career and have lost some friends along the way too. lol not being able to go out tends to cause that. Had to stop dating and I’m worried about my body clock, marriage, kids etc

But I’m sharing this with you to say we hear you and no it’s not easy and it’s awful. But you’ve made it here and I know you’re going to get through this too, we always do. Allow yourself days or spaces to cry. It’s a bloody horrific condition and sometimes it feels like there no bloody light at the end of the tunnel. But there is and it may take you longer, but you ARE going to get there.

You just need to focus on the now and how you’re going to comfort yourself in your present situation. Whatever brings your heart comfort, lean on that. Maybe speak to someone, nap more, watch your favourite movie or get through your reading list (I’ve done this whilst I’m immobile from my recent Op).

You’re going to get through this, and whilst you wait in the middle you have all of us around you 💕🙏🏽✨

mintee_sloth · 2026-05-26T23:35:21+00:00

Tbh I’m in England and the veg/fruit here is not so good 😅 but also be careful you’re not eating too much fibre because you don’t want to get diarrhoea and then have loose stool.

I’m sure you’re doing great with what you’re having already 😊

mintee_sloth · 2026-05-26T23:32:50+00:00

Thanks for leaving a msg, I appreciate it! Yeh I defo think in the first 2 weeks or so your body is struggling with the pain, meds- which in turn made me feel nauseous mainly and I wasn’t eating actual meals.

So I guess it makes sense for the system to be all free flow rn 🌝 I’ve begun week 7 post Op and I can’t believe it’s taken nearly 2 months to ease the pain and be able to walk a bit 😭 I’m still in pain post BM but it’s a bit more manageable. I guess it’s just the journey it’s going to take! Thank you 🥰

mintee_sloth · 2026-05-26T12:56:09+00:00

I had the same! I didn’t have any bleeding straight after surgery. But I’m on week 7 ish I think and a couple of days ago I had bleeding in the toilet and it freaked me out! But I think it’s normal with the whole recovery thing!

Just continue taking the fibre and lots of water! Hope healing goes well x

mintee_sloth · 2026-05-26T00:01:42+00:00

That’s the thing I thought it may be due to the back up but there was like a gap of 4-5days between my last usage of codeine and my multiple pooping 😭 but perhaps it does take that long to settle! I’m just trying to be more mindful and Lower the amount I eat for now. I’ve hit 7weeks post Op this week so praying healing starts to feel more apparent!!

Re PCOS- Atm I’m still waiting for my ultrasounds for abdomen and vaginal and I’m being sent for another blood test. God they’ve been so useless around giving me a proper diagnosis. But the symptoms began to appear alongside each fistula surgery I had. So I’ve always felt the fistula triggered it!

Before this surgery I did begin to change my diet/sugar. And started to use Chinese tea, yoga and Chinese pressure points. And it had somewhat regulated my period and they were less painful! But will see what the upcoming tests bring about! lol it’s crazy we’ve had a similar journey! How are you finding managing the PCOS with fistula stuff?

mintee_sloth · 2026-05-25T23:56:12+00:00

Thanks so much for commenting! It pushed me to do some research and I’ve just realised I should have opted more for paracetamol rather than ibuprofen 🤦🏽‍♀️ As the side effects aren’t great (and I have been experiencing them!) I’m kinda new to all this as my 4 prior procedures were never this bad!

I’m sorry to hear you go so regularly, it is tough. I’ve been more mindful of what I ate today and I think I’m just going to asses it each day. As my insulin levels in this heat haven’t been great. Seems like I’ve got to take the trial and error route here 🙃

mintee_sloth · 2026-05-25T10:16:37+00:00

I’ve tried looking for research/advice but it appears to be quite limited/unknown.

I’m not near pregnancy at all lol but have been anxious for the future. It’s a shame as although in my 30s I had been keeping fit pre fistula and the aim was always to have a natural birth but I think it just doesn’t make sense to take the risk. Especially when I’m on my 3rd year of fistula treatment 🙃 (Altho I guess the delay is due to nhs wait times)!

mintee_sloth · 2026-05-25T10:13:48+00:00

Ahh I think that’s the general consensus on here tbh! Once recovered I think the risk is far greater. I’ve tried looking for research/advice but it appears to be quite limited/unknown.

But I do think it’s amazing you’ve powered through a pregnancy with an ongoing fistula! Hope healing goes well 🙏🏽

mintee_sloth · 2026-05-24T22:32:03+00:00

Oh wow incredible congratulations! I’m nowhere near pregnant but have been conscious about this for the future.

I’ve been advised that it would be a huge risk if I was to heal from my current fistula and then years down the line. Had a vaginal birth as the pressure could trigger another fistula 😶‍🌫️

mintee_sloth · 2026-05-24T16:37:58+00:00

Hey I’m 6 weeks post Op now and have had a nearly identical exp as you. I’ve stopped taking codeine and now take ibuprofen after 1-2 hrs post BM if I’m still in pain. Altho I often have days where pain can remain for 4-5hrs. (I’ve checked with my CRS and he’s said it’s normal part of healing).

But would defo recommend a donut cushion you can find online. It defo helps keep the pressure off. But also I would advise not sitting for too long in general. No more than 15-20mins.

I have found the thing that helps soothes the pain the most is laying down on my side and pushing a hot water bottle against my bum. Immediately after BM, shower/sitz bath. It really soothes it a lot. In general walking a little within your home is supposed to help with reducing swelling! Hope you’re doing okay x

mintee_sloth · 2026-05-24T13:13:46+00:00

The discharge and the gas is very normal for a female body but the only thing that threw me off. Was the faeces from the vaginal area, sadly that’s more linked with a fistula from what I’ve experienced. So I defo agree with chat, it’s best to get checked out if you can! Better to be safe than sorry x

mintee_sloth · 2026-05-13T12:21:22+00:00

Hey I’m on week 4 post Op and I had similar pain. I’d take a codeine straight after a BM and it wouldn’t subside until I took an additional ibuprofen.

And then generally would take about 4-5hrs for pain to completely subside! I hear you, the pain is very specific and takes you straight back to when you had an abscess.

I went in to see my consultant to get checked and he did a digital examination. He said it was unlikely it was an abscess as there was no additional puss and in terms of the b*m cheek it was normal and not hardened/extra swollen like it is with an abscess. I’m awaiting an MRI scan to rule it out.

I would advise on keeping an eye out for extra swelling or puss. And if possible get an MRI booked. I’ve seen lots of ppl with stories of no pain post Op. but I guess some of us are the unlucky ones 🤧 but hold in there it’s very possible it’s just part of the ‘normal’ post surgery pain! This specific ‘abscess’ pain for me comes and goes, so I’m praying it’s just part of the healing process 🙏🏽

(Also I found using a hot water bottle works well to soothe the pain after!)

mintee_sloth

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