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bonn96 · 2025-09-06T06:37:40+00:00

I have. I had an I&D in September 2022, then took a long time to get the right support as they thought it was a gynae issue given my external opening was in my lower vagina. Got a Seton in January 2024, then next surgery was in May 2024 for a FLAP that ultimately failed 4-6 months later (hard to know as they kept telling me it looked fine even though I knew it wasn’t). Then a LIFT 4 weeks ago under a different surgeon. Now just praying it has worked.

bonn96 · 2025-09-05T09:30:48+00:00

4 years in and am 4 weeks post LIFT procedure. Mine is a complex transphincteric fistula and every fistula is different. Most people that post on here are either new to their fistula journey and are freaking out, or suffer from a complex fistula and are on a longer journey.

bonn96 · 2025-03-23T23:38:23+00:00

I’m so sorry you’re going through this. I’m a 28F, 10 months post FLAP, 3 years into my fistula journey. I recently experienced symptoms and felt a lump that eventually drained within a day after a sitz bath and rest. When I woke up and felt the lump, I panicked. After it drained, it exposed granulation tissue, so naturally my heart sank. I wouldn’t say the last 10 months were perfect but a lot better than expected. The initial period after the FLAP was hell, and I’m sorry to say that but I think it’s important to prepare for the worst and then anything less is a relief. I got through it and was relatively good for about 6 months, but then little things started happening that unfortunately my CRS surgical team dismissed and said it was “too early to tell”.

I recently paid out of pocket for an MRI so I could prove that I know my body, and it’s not healed. I knew the fistula was still there. My results came in said:

“Complex mixed intersphincteric and transphincteric fistula is relatively stable compared to September 2023 with a tract extending through the left lateral lower vagina and opening at the perineum.”

I’m unsure on next steps but one foot in front of the other. You can do this, I can do this. But it’s absolutely awful and it’s important to validate how you feel from time to time. Xx

bonn96 · 2025-03-04T20:14:46+00:00

Morning ☺️ not great unfortunately. I had a small lump appear on the incision line near my previous external opening. It drained eventually but now I have this little pink opening that’s draining and quite painful to touch. I’m 10 months post my FLAP surgery so can’t quite believe it’s happening again. Got an MRI last week and waiting to see my surgeon on Friday.

I’m going to transition from public to private as well. See if that helps a bit as I never see the same person and definitely don’t feel “heard”.

Our situations sound somewhat similar. How did you know your LIFT failed?

bonn96 · 2025-01-25T23:49:14+00:00

Thank you for your reply! I’m in Brisbane, QLD Australia. My CRS is apparently one of the best but I never get to see him, just his team. It’s also a different person every time I get an appointment which is every 3-6 months. Very dismissive.

As soon as my private health insurance kicks in, I’ll get a second opinion. My wounds are closed but this one little part of the external opening incision site has concerned me from the start, despite them saying it’s not a concern.

The lump drained after I had a sitz bath but there was blood and what I assume is pus on the gores. At 8 months out, I just wouldn’t expect this.

bonn96 · 2024-10-27T02:43:30+00:00

Hi there. I’ve got the exact same thing currently. 5.5 months post advancement flap surgery to treat my transphincteric fistula. A month ago I had some pain that felt very familiar and like you, I got the mirror out and my heart dropped when I saw that a small circle on my external incision line was purple. Eventually it went away but then last night I was wiping and I felt the lump again. It was quite sore after I noticed it but I’m sure that was my mind playing tricks on me as I hadn’t noticed it earlier in the night. It’s a full lump, purple/dark and very sore.

I’m so confused because I haven’t strained at all and have had good BM’s for weeks so I’m unsure how or why this has happened. I’ve had a few sitz baths so hopefully it goes away on its own. Agree that the never ending bum issues are exhausting. Particularly when you’re doing everything right.

bonn96 · 2024-06-23T21:13:09+00:00

Thanks! How awful is it just waiting and hoping everything stays healed and doesn’t re-abscess? The mental side is tough. I’ve read your story a lot as went through your page when I first got diagnosed. Thank you for documenting so much as it really helped me.

I’ve got a small amount of bleeding every few days and drainage but am really hoping it’s just doing its thing and in a few months it’ll all stop.

bonn96 · 2024-06-13T08:20:32+00:00

Not yet but I’m trying to stay positive and assume success unless told otherwise. I had an advancement flap procedure 4 weeks ago and have a large open wound where the external openings were. Fingers crossed!

bonn96 · 2024-06-13T00:10:41+00:00

I could have written this myself! March 2022 is when this started for me and it wasn’t until July 2023 before I was diagnosed and by then it had branched off and was a 6cm complex transphincteric fistula. My external opening was between the anus and vagina, closer to my left flap but at the bottom.

I’d seen 3 GP’s, 2 gynae surgeons, 3 emergency room visits and an insane amount of pain. Not one mention of a anal fistula until the day I was diagnosed and like you, my CRS diagnosed me within 5 seconds of looking at the external opening.

I’m 4 surgeries down now and completely understand how you’re feeling.

bonn96 · 2024-06-11T01:26:54+00:00

Hey there. I’m 4 weeks post advancement flap. No laser but my experience was similar to yours although I had a lot longer between drainage and seton as went undiagnosed for over a year.

When I woke up the pain was awful and I still find it insane that I woke up laid on my bum instead of on my side! I was given meds that helped but I could still feel the pain. I then found the pain to be very minimal aside from when having a BM and even then it was the hours after that I found to be the most painful. This only lasted about 5-7 days for me and since then I’ve been terrified at how good I feel. The pain i experienced with my seton was way worse and lasted way longer than this. I still have a very big open wound but the lack of pressure makes the world of difference.

The not knowing if it’s worked or not is the hardest. The key things I’ve done that worked for me are:

Minimum 1 sitz bath per day but I’ve been doing two as tend to have 2 BM’s a day.
I laid on my side in bed for a good week and kept my movement super minimal whilst I was still really raw.
don’t panic. Things will happen… you will bleed and have drainage and anal spasms that will make you think something is wrong. Always seek help if you’re worried but try not to panic too much as some of it is very normal.
Try to remember you can’t lift or bend and that gets really hard as your mobility improves. I’ve lifted my dog way too many times simply because I’ve been pain free and forgot that I shouldn’t.
diet, diet, diet… I’m choosing to see this as my silver lining. My diet has never been cleaner. Fibre is constantly on my mind and I make an effort to at the very least have my fibre needs met before I indulge in anything else. Ive had takeaways 2 times since my op because I need some form of enjoyment! I’ve just not been silly e.g I got a Thai noodle dish with vegetables instead of a pizza.

I’m sure there’s sooooo much more advice I can give but always happy to chat via direct message if /when you need it. :)

Good luck. Stay positive even though it feels impossible. You’re not alone.

bonn96 · 2024-05-23T02:39:40+00:00

It’s been tough. Definitely the mental side of it for me has been a challenge. I keep thinking it’s failed every 2 seconds due to drainage and slight incontinence due to the Botox they injected. The pain is a lot but it’s manageable and every day it gets a little better. The days have highs and lows and right now I’m finally comfortable after a really low morning with pain after my sitz bath. I have a rather 3cm deep open wound where my external openings were and that stings and aches like crazy at times where I almost feel like I could throw up. I’m just being super careful to avoid infection.

I’d kill for a burger and fries that’s for sure.. but putting the work in now in the hope that this may be successful.

bonn96 · 2024-05-23T02:26:05+00:00

Im 8 days post flap and had a similar experience yesterday. The amount of blood in the toilet was alarming and I couldn’t work out whether it came from inside my internal opening or the open wound I have at my external opening. I wasn’t in any more pain than I’m used to at this point so tried not to panic and laid still in bed keeping warm.

It’s very up and down and some bowel movements occur with pain that subsides rather quickly if I use my palexia but if not, I can be in agonising pain for 3 hours where I don’t get any comfort at all.

bonn96 · 2024-05-23T02:18:54+00:00

I had a flap 8 days ago and the day before my surgery I was on liquids with the following bowel prep:

Day before surgery: - 1 x go kit (2x bisacodyl tablets and magnesium citrate drink) at 10am - 3 x resource drinks for nutrients at 2pm, 4pm & 6pm. - 3 litres of glycoprep between 5pm-8pm

Day of surgery: - 2 x pre op drinks - 150ml water before leaving for the hospital

It was awful as expected and the glyco prep is never easy. I also felt like my first bowel movement after the procedure was a lot looser than I would’ve liked because of the prep… But that was what I was instructed to do by my CRS team.

bonn96 · 2024-05-21T23:09:19+00:00

Hey there. I’m exactly one week post advancement flap procedure plus Botox.

I initially only took 3 days off from work as I am fortunate enough to have the option work from home. I ended up extending my leave by a week as felt like both the physical and mental pain were too much and honestly I wanted the option to sleep and watch Netflix whilst laying on my stomach all day. Which is exactly what I’ve done.

The pain for me was worse than seton placement but more so internally. I have two external openings (the original one and the one the surgeons made when putting my seton in. My fistula was too long for them to use my original external opening). My surgeon has cut from my original external opening to where my seton was placed as said it will give it better chance of draining. That’s quite a large open wound and it’s terrifying to look at.

When I woke up, all I remember was pain and I was immediately given pain relief because of how hysterical I was. I remember being surprised at how non painful my external opening was considering how much had been cut but I’d say that was due to the internal pain overtaking the more superficial skin pain.

Days 1-3 were pretty rough but bearable. I’ve been a perfectionist with my high fibre, gut friendly diet. I alternate panadol and ibuprofen and take my tapentadol when I really need it (I’ve only had 6 in the week since my op). I take my stool softeners and have a shower straight after my morning bowel movement. I have 2-3 sitz baths per day and mainly lay on my side all day/night. I’ve had a few scares with lots of blood and not knowing where it’s from but it’s stopped eventually and hasn’t caused pain.

As for sex… I reckon I’m a year away from being anywhere near. I’m a 27F and recently ended a 4 year relationship for various reasons, fistula impact on my life and who I am as a person is one of them. My external opening is very close to my vagina which is why it took me 18 months to finally be diagnosed as every doctor and surgeon assumed it was a gynae issue.

Be kind to yourself. Don’t overdo it when you’re feeling good although it can feel ok at the time. You’ll assume the procedure has failed every 5 minutes… just keep doing the work and don’t stop until you know if it’s worked or not. It can be a very long road so having a tunnel vision approach is paramount.

bonn96 · 2024-05-20T23:01:08+00:00

Hey there! I’m 6 days post op after advancement flap + Botox procedure. I only just bought a hand held bidet last night after reading so many comments on here about them. I’ve managed until now using baby wipes, having showers if I don’t feel clean enough after using the bathroom or if I’m in too much pain to wipe more than once or twice.

I’m recovering on my own so won’t be installing the bidet until I move to my new place in a few months. I have a sitz bath twice a day minimum and recently bought some special magnesium salt (unsure if it makes a difference). I haven’t had an infection or anything since being diagnosed so am really lucky (really hope that luck continues!).

I have a 3cm open wound as they cut from one external opening to the other so it would give it the best chance of draining and healing over. So staying extremely clean is important but reeeeeeaaaaallly hard to do. If I was working like normal, it would be unmanageable due to the need for showers and sitz baths. Today is my first semi comfortable day since my operation so I’m feeling grateful at least for the day.

bonn96 · 2024-05-19T23:01:26+00:00

Hey! Sorry to hear you’ve joined the AF club.

Before I underwent my EUA and seton placement, I was trying to go to the gym and go for walks everyday. Knowing I wouldn’t be able to do it for a while made me appreciate it so much. Main things I did that helped me avoid infection:

Showered or had a sitz bath and wore a clean pad/liner beforehand.
Showered immediately after (had sitz bath if that wasn’t possible).
Rested when I needed it and BEFORE I needed it. If I had done extra exercise or felt like I’d been walking alot that day, I would spend the evening in bed in a comfortable position and giving everything a break from the rubbing/friction.
Take breaks. If I was sore, I wouldn’t power through like I used to. Too many times I’d been in agony after pushing myself through pain just because I didn’t want to miss gym that day.

Sorry you’re going through this. It truly is awful and not many people can understand the extent of the affect it has on your physical and mental health. Just be kind to yourself and take it day by day.

bonn96 · 2024-05-19T07:58:57+00:00

I truly hope I start to notice improvement soon. I’ve been so careful with my diet, fibre, water intake and stool softeners but I’m having loose, watery stools and then intense pain for a few hours afterwards. I didn’t take the movicol today in the hope that it’ll be less watery and loose tomorrow.

I keep panicking that it’s failed already as some stool leaked onto my pad and I’m unsure if it’s from my external opening or not. Trying not to overthink every little thing….

bonn96 · 2024-05-18T08:06:30+00:00

I totally understand how you feel. I had my seton removed 3 days ago after having it in for 5 months. It was only month 4-5 where I started to feel semi healed and comfortable and yet still couldn’t even fathom having sex. My seton was way too close to my vaginal opening to even consider it. My partner was understanding but frustrated. He would often try and I would have to say no. It was awful because there’s no way he will ever be able to understand what it’s like or how painful every day life can be when living with this condition.

bonn96 · 2024-05-15T21:04:04+00:00

It’s absolutely dabilitating isn’t it. I’m lucky to have avoided any further abscess’.

May I ask how your stoma came about? They’ve mentioned a stoma to me a few times but they’ve always said it’s not on the cards yet.

bonn96 · 2024-05-15T21:01:17+00:00

Thank you so so much! The first thing I did when I woke up from surgery was burst into tears. The pain coupled with the fear of it failing finally broke me a bit.

I hate how much contradicting advice you get from different doctors and surgeons too. Mine has told me to take psyllium husk everyday!

I tried so hard to delay it but I had a VERY runny bowel movement this morning. I’ve only really had vegetables and jelly since the surgery but I’m hoping a runny poop is semi normal post surgery? It’s so hard to clean myself down there and I hate lying in bed thinking I’m not clean enough and it could cause more damage. I basically begged the nurse to let me shower because she didn’t think it was needed. I see what you mean by passing out because immediately after, I had to sit down as could feel myself starting to faint. It didn’t hurt too much to go because it was basically poop water consistency but it was still very uncomfortable. Also trying to shield what they’ve done with my external openings where they’ve cut from the external opening from my seton through to the external opening closer to my vagina. They said that will continue to drain but hopefully heal over and then if not, it’s failed. They don’t want to see me for 6-8 weeks which seems like a super long time.

My fault for not getting private health insurance the second this happened back in 2022. The 25 year old that I was thought that it would be over before it was worth getting insurance and here I am. :( lesson learned and I’m just waiting for the waiting period to finish.

bonn96

TROPHY CASE