Seton Stitch Support

[ChristmasBadAss]

NC'd as it's a personal subject. Does anyone else out there have a seton stitch for an anal fistula? I've had mine 6 months today and I've felt so alone as it's not the kind of thing you want to talk about in RL, I don't know of anyone else who has one, wondered if anyone would appreciate a support thread?

@sazzle14 hi lovely, thanks for checking up on me! I’m still a bit loopy from all the painkillers but I’m very pleased to report back that my CRS was able to do a fistulectomy as the fistula was superficial and did not cross any muscle. I went in hoping for that but entirely expecting a Seton placement.

I had to spend the night at the hospital as my surgery was delayed (case before me) so I had the wound packed this morning there and oh my...Even with morphine in my system it was bad!

I’m absolutely terrified to go to toilet but I know it’ll happen in the next day or two.

@amanda333 I’m so sorry to read what you’re going through. I’ve been miserable the last few months, withdrawing from a lot of people and quite honestly have used yoga and reading to make myself feel happy.

@lola006 I am reading quite a lot recently and it helps me get my mind off stuff. I should also do more exercises like yoga. Thank you for sharing what works for you.

Packing is torture! I’ve had a really tough time with the packing for my last abcess. Luckily though, a nurse introduced me to xylocaine (numbing cream) and she used a syringe to put it all inside of the abcess. She left it there for a good 5 minutes and that made all the difference, I could barely feel anything! Since then I told all the other nurses to do the same and getting it packed was really not that bad. I recommend asking your nurse next time if they have any.

Going to the toilet the first time is terrifying, I feel you! Maybe try baby wipes to wipe and hop in the shower right after to clean the area.

I hope you have a speedy recovery!

@amanda333 thank you
This chat helps so much to have other people to talk to.
What type of gauze do you use?
I try and buy things that are cheap as you have to go through so many!

I totally understand and your partner not being able to relate but being supportive
It’s so difficult

I have definitely felt a knock of confidence in myself this time round but like you trying to be as positive as possible. But it’s definitely hard.

@lola006 I am over the moon for you! So pleased it went well for you. Fingers crossed it heals well and it settles quickly

Reading is a good idea, I haven’t tried that

Painkillers are so annoying as most of them make you constipated and then you have to use laxatives to counteract that which then can give you gas or upset stomach which stops you from going out as that’s even more embarrassing!
Also “packing” I’ve read that a lot in this chat but I have never had that before so I’m unsure of what that is ?

@Sazzle14 I use medium size gauzes from the band-aid brand (johnson & johnson). They are quite thick so I cut them in half. This way it’s more comfortable and more affordable since you have twice as much.

I agree painkillers are hard to work with. I usually take tramadol for pain and it works pretty well for me and it doesn’t make me constipated!

Packing is when they put a dressing in an open wound to absorb the drainage and to prevent the wound from closing so it can heal properly. It is quite painful since they stick it in and poke inside the abcess for it to stay in there. And you have to get the packing changed every day or two.

@amanda333
Oh I see, my abscess was operated on and then left to heal on it’s own accord. Then when it wouldn’t fully heal they did a mri and found the fustular.

I usually use co codomol to help but sometimes nothing can help.

I wanted to ask if anyone new much about if the placement of the setons meant anything.
My one currently is in a different place to the last few I’ve had
But getting answers from the surgeon after surgery is impossible.

@Sazzle14 I’ve read that doctors are using the packing method less and less since research has shown that it doesn’t help abcesses heal better. I guess it depends on the doctor’s beliefs.

As for the placement of the seton, I wouldn’t know as I’ve had the same one in for 2 1/2 years. Why would your doctor change the seton? Is it because it keeps falling out?

@amanda333
My surgeon removes the seton, cleans and repairs part of the fistular which he can without cutting the muscle then replaces the seton with a new one and tightens it so the old one isn’t lose. Usually it’s placed coming from the anus then tied together with the other end coming from the scar in my butt cheek
But this time it just came out of the scar. Which makes it much easier and less painful to go to the toilet. But I was curious to where other people’s setons were placed.

I know it’s really personal, I felt a bit silly writing that ^ lol

How many operations have you had?

@Sazzle14 my seton goes through my anus and comes out from my scar, like you said. It is also very loose and my surgeon never talked about tightening it up or doing another surgery to clean and repair my fistula.

I’ve only had the one operation which was to put the seton in (in July 2016) and it’s been untouched since. I will have another operation at the beginning of summer to put another seton in my second fistula. I’m guessing he will also change the current one. I’m so scared of having 2 at the same time, especially because my second hole is far from my anus.. it’s closer to my private parts. It will be hard to have a bowel movement and to go pee!!

I know this is so personal that’s why I have a hard time talking about it because it’s so embarrassing!!
I’m happy to hear that your new seton makes it easier to go to the toilet and is less painful!
How does it just go through your scar? Does it come out somewhere?

Hi all, just wanted to say I'm thinking about you all and sending so many healing vibes. You're all amazingly brave. It's so nice to see this thread is bringing you together to support each other.

I had 8 months of daily trips to the nurse for packing, it totally took over my life. I think I actually became a bit institutionalised as I actually missed chatting with the nurse when I'd healed, but that's the only thing I missed!!

I found it helped to take a painkiller (I took ibuprofen) 30 mins before the packing appointment. I also took painkillers 30 mins before braving my post op toilet trips which I was always terrified of It definitely took the edge off the pain

@amanda333
So my first operation was
March 2017 with an abscess
2nd was May 2017 fistula drainage
3rd was October 2017 for a seton as the fistula didn’t heal
4th was Feb 2018 new seton
5th was Aug 2018 new seton
6th was Dec 2018 another seton

So they change it every 4/5 months
I’m curious to why you haven’t? Maybe you should ask next time you see him?
My surgeon said if the thread is loose it won’t do the job so they re do it and tighten it
You never know it could be at a good location that they can lie it open so it will repair and you’ll only have the new one.

Have they said why you got the second one?
Praying for you. I really hope they are quick healers.

My new seton is no longer coming from my anus like the last ones. It just comes out of my scar so both end of the thread comes out of the scar and is tied on the outside of it

@DontStopMovin
Thank you for your lovely message

This thread definitely is great for us all in the same boat to talk

@Sazzle14 my surgeon explained to me that the seton is only there to keep the fistula track open for it to drain constantly and to prevent the hole to close. That allows it to heal by itself (from the inside-out) and once it stops draining we will take the seton out so it can heal completely. I just read that there are two methods; mine (seton is tied loosely) and yours (seton is tied tightly so the fistula track becomes smaller and smaller until they lie it open).
I think it depends on the doctor and the placement of the fistula.

I’m getting the second one for the same reason as the first, to prevent my other fistula to close and to keep it draining. I could ask my doctor why he chose this method instead of trying to lie it open like you.

And for your seton I’m having a hard time figuring out where it does the loop inside of you lol. Hopefully someone else can help you out! But if it’s less painful and it makes it easier for you then it’s a good thing!
I really hope your fistula heals quick too, I’ll be thinking of you!

@DontStopMovin thank you for your kind words. I sure will take your advice about taking a painkiller before going to the toilet after my operation!
I’ve had about 6 months of daily packing with my first abcess too! And a couple more months of silver nitrate to burn the scarred tissue (which was even more painful). I can’t say I missed going there though🤪 lol

@amanda333 oh I see that makes much more sense
I was worried they had just forgotten about yours lol I don’t know what I’d prefer, going in for operations all the time is very tiring.
But being left and not knowing if it’s repairing would drive me crazy. I think it’s because mine was through the muscle. So are you UK based?

Haha sorry my explaination wasn’t very clear. Would be handy if we could draw diagrams would it!
So I think the seton loops through the fustular inside and maybe where it is further away now because it has moved they decided to put it straight out the scar rather than back through the anus. Tbh I’m not entirely sure, they didn’t tell me.

I’m pleased I never had the packing done. It sounds awful. My job is being stood most of the day so can be quite uncomfortable.

Is yours still painful and sore after the 2 years?
I find mine is sore some days but not all the time

@Sazzle14 hahaha it would be much simpler if we could draw diagrams!! I think I understand now. It’s unfortunate that your doctor didn’t tell you.

And it’s hard to tell which method I’d prefer. You’re right though, it does drive me crazy sometimes not knowing if it is repairing. Sometimes I feel like the drainage is getting so much better only to wait a couple of days and it gets worse again.

I actually live in Canada!

Mine is also painful some days and others it’s totally fine. Sometimes it hurts for a whole week then I’m fine for another week or two. I find the pain is worse when I have bowel movements (having Crohn’s disease I can have many in a day) so I find it hard to control the pain during one of those days..
The pain also gets worse when I’m sitting down for a long period of time. I’m starting a new job this Monday at an office (accounting firm) so I will be sitting down at my desk most of the day. Hopefully they have comfy chairs! Lol

@amanda333
Ah lovely, I have never been.

Same as you really? Walking agrevates it quite a lot. Some times when it’s fully healed and I go back to the gym and if I do to much cardio it gets sore
I’ve been sore more this time as I think the scar is so deep now it takes much longer to heal. Normally after 6 weeks I’m feeling almost back to normal and minimal discomfort
But thins time round is quite uncomfortable, but like I said before going to the loo is easier.

Oh poor you, I don’t have chrones so I can’t relate. And you can’t prepare can you with painkillers because you never really know when the bowel movement is going to come

Good luck with your new job

When is your second fistula opp ?

@Sazzle14 that’s too bad, you just can’t win! Being stood most of the time is painful and so is moving too much! Lol hopefully it’ll heal sooner rather than later! Fingers crossed for you.

I actually find that walking or staying up for a long time helps because I don’t put pressure on it. But then again mine isn’t changed every 4-5 months so the scar isn’t fresh like yours.

And that’s right I never know when I’ll need to go to the toilet. But when I have to go I need to go now lol so no time to plan for painkillers unfortunately.

I don’t have a date yet but my doctor’s secretary is supposed to contact me this week to pick a date. I’m thinking sometime in May or early June. I don’t want to do it too soon because I need a little break from the hospital and with my new job (especially during taxe season), I don’t want to take a day off for my opp plus a week of recovery (doctor’s order).

When is your next operation? I’m guessing in 4 to 5 months since you just got one?

Hi guys,

I’ve just had my first seton placed after 3 weeks of hell and I’m so glad I’ve found you guys!

So far so good, although it’s only been a week since my op, but I’m struggling with constipation

Any tips??

I’m sure it’s been caused by all the pain killers and the fact that I wasn’t eating for days at a time.

They gave me some bowel prep in the hospital to drink which helped a bit but then I had to stop it as X-ray showed I was full of fluid

I’m starting to really panic

@MrsDrSpencerReid
I’ve only been on this site for a week now and it has helped me so much already. I feel like I can finally connect with some people! It’s great.

I completely feel your struggle since the same thing happened to me after my first operation!! It was so bad I had to get put under to remove everything (yes, I know, super embarrassing!!!)
Hopefully your constipation won’t get to that point!! What I’ve learned from that though is to take a laxative/stool softener when I take painkillers. I use restoralax (dilluted in apple juice) or sometimes just stool softener pills.
I also used a suppository in the past and that was very effective but it could be really uncomfortable right after your sugery.

Hopefully you’ll be much better soon, I’ll be thinking of you! Let us know how everything goes!

Thank you so much @amanda333

I had to have a ‘manual extraction’ when I had bad constipation in my first pregnancy 12 years ago so I know about embarrassing

Right now I’d welcome waking up and being empty! But hopefully it won’t come to that!

I had some Herron ClearLax from the hospital but I’m out so I’m about to head to the chemist to see what they have there. I’m in Aus so brands are probably different here.

I was diagnosed with Crohn’s while in hospital too, after previously being diagnosed and treated for Ulcerative Colitis for 2 years. They’ve said because of the fistula/abscess and I also had a fissure, that it’s definitely Crohn’s. So that’s something else to get my head around!

I feel a million times better than I have been though which is such a relief. If only I could poo!

@MrsDrSpencerReid
I’m hopeful that you’ll find something that works!

And I’m so sorry to hear that. I have Crohn’s myself. Been diagnosed when I was 12! I also have an anal fissure at this moment. I did get pain after bowel movements recently but I just though it was from my fistula and/or hemorrhoids. My doctor pointed it out last Monday.

Were you taking any medication for your colitis? And are you still on them now or you had to change?

So happy to hear that you’re feeling much better!

I was taking Mezavant, Imuran and Allopurinol for my UC, and they’ve kept me on those so far.

They’ve also started me on Infliximab, I had my first infusion while on the ward, and just waiting to hear back the date for my next one which should be next week.

I was so sick leading up today my hospital admission, I couldn’t walk or sit and I was having so much bleeding. My GP sent me home with hemorroid cream, twice!

When I finally broke and went to A&E, I was so worried that they would send me away for being a sook about hemorroids, but I was borderline for Sepsis when I got to triage

Feeling like a new person now, but really sad that I pretty much missed the whole festive season/DD’s Birthday/year 6 graduation/ my birthday. Luckily we’re on our summer holidays here so haven’t had to worry about school runs etc.

@amanda333

I totally understand. Why is your operation so long Away? Is there just a waiting list ?

My next consultation is in March so assuming my op will be 6weeks after that in April or May.

@MrsDrSpencerReid

So sorry you are having a rough time with this. We all feel what you are going through and are hear for you.

I was really constipated during the first week or two after my op.
I found that all the laxatives I took gave me really bad wind and stomach which meant I couldn’t really leave the house.
I was eating lots of fibre foods and had some fibre gel drinks - which aren’t very nice.
Also I tried to walk as much as possible because excersise is supposed to help you go too.
I was given lactulous drink when coming out of hospital which works over 2-3 days
Then I was also taking two senokat tablets at night time.
I also then used a suppository when I felt comfortable enough and with in an hour of using that I was able to go and it felt so good!

After about day 4-5 I tried to minimise the anount of painkillers i was taking because they weren’t really strong enough to help with the pain anyway and made me constipated which made it all worse!

My last operation was the 12th December so I understand the feeling of having a bit of a hard time over the Christmas holidays!

Is this your first abscess/seton?

@Sazzle14 yes this is my first one. I’d been doing really well up until this! I last saw my Gastroenterologist at the end of November and he said he didn’t need to see me again until the end of Feb when we’d organise my next colonoscopy.

I feel so uncomfortable. I haven’t had any pain though in regards to the seton so maybe I’ll be able to use a suppository. I see my Gastro on Thursday and my regular GP on Friday, but I’m trying to get in to see her sooner so I can find out what the best thing to help me poo is!

@MrsDrSpencerReid

That’s good to hear you’re not in to much pain. I hope it stays that way for you. I found a couple of mine were a lot less painful than others.
If your not in pain then maybe try to limit your meds as I found this was definitely the cause to my constipation
Try a suppository I don’t think it will do any harm and I hope you can get some release

Good luck at your appointments this week.
I found writing down any questions you want to ask is always good because then you can’t forget to ask when your with your doctor.
I used to walk out of my appointments and curse myself as I would forget to ask things I wanted to know.

@Sazzle14 yes I’m positive the painkillers have caused it. Plus I didn’t eat for nearly 4 days because I was so sick, and I was super dehydrated by the time I was admitted.

After the initial morphine in A&E I’m sure I only ever had paracetamol, which I haven’t needed for a couple of days now so fingers crossed things start moving soon.

They said in hospital that my gut was ‘stunned’ by what had happened and it was taking its time to start back up again.

@MrsDrSpencerReid
I hope so for you
I found my stomach was very noisy and painful a few days after my operations
Sounds like you had a awful experience
I was tested for sepsis but was all clear thankfully.

I also don’t have chrones as far as I am aware so