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?

Hi everyone so happy i have found this post and other people who are going through the same thing. Mine all started in June 2018 with an perianal abscess, had it drained 12th June And packed everyday for 7 weeks but unfortunately it wasn't healing as it should do my surgeon referred me to a CRS who found a fistula at the 2oclock position?? He decided to put a Seton in, leave it for 12 weeks take it out and have a fistulotomy. So had my seton put in 21st September 18 was suppose to get it taken out and have my fistulotomy on Thursday 17th Jan 19 but woke up and he could not do the fistulotomy instead he has replaced my Seton ordered an MRI scan for 4 weeks time and placed me on the list for an EUA in 6 weeks time. I feel like I've been left in limbo. When i woke up from surgery the nurse looking after me didn't even know what a seton was (she googled it whilst i was sat in bed) or why he wasn't able to do the fistulotomy, she couldnt answer any of my questions. This new seton he has put in is so so painful, alot more than the last one 😭 Does anyone know why he has ordered an MRI? This has been going on now since June last year and there has been no mention of an MRI so why now? My head is going around and around thinking of all kinds. I'm going to try ring my specialist nurse tomorrow morning and see if she has any answers for me. Hopefully she will xxx

@pebbles1897

So sorry to hear your what you’re going through.

My reasons behind a second/third/forth ect seton is because it travels through the muscle so the seton acts in a way to pull it away from the muscle so eventually they can fix it completely
Maybe yours was the same and he couldn’t repair it fully
I know how you feel with in answered questions it is horrible being left in limbo

Also for the MRI, I had one after my abscess didn’t heal they thought it was a fustula but they wanted to see for sure and to see where the fistula was located. So an MRI gives a much better view
I think it’s because there is so much muscles down there they have to be so careful 😔

As for the pain, day 3-7 I find the worst because the anaesthetic wears off and there is no more numbness. Give yourself time to heal. Hot sitz baths help. Lots of rest and don’t do to much. Painkillers and laxatives also.

I hope some of that helps you
Let me know if you have any other questions

Sending love

Hi @sazzle14

Thanks for your reply. After having my seton placement on the 21st September i had a follow up appointment with my specialist on the 21st December at which i explained I'd still been having alot of pain, not all the time but when it was there i knew about it, and still alot of discharge from the wound. She fobbed me off with it totally normal, we'd expect that at this stage don't worry etc. She went on to explain about the fistulotomy and i asked "You wont be cutting any of my muscle away will you?" Because i had done alot of reading about this and was really worried about the removing too much muscle and incontinence 😭 To which she said "No we won't be going anywhere near your muscle, don't worry" I don't know what they're doing anymore.
When i woke up after my 2nd seton surgery they gave me my discharge notes and it just says "Very deep cavity on left side with ongoing sinus. Have ordered a MRI scan for 4 weeks time and will be put on list for EUA in 6 weeks time". And that's all the explanation i got.

Im day 3 now nearly day 4 of my 2nd Seton surgery and its just completely different to the first. Im thinking maybe they have had to go deeper than the last one? But again I'm guessing, i don't actually know.

Its such an embarrassing thing to have you can't really talk to alot of people about it, I've got to the point were if people at the kids school or people at work ask i just say "Woman's problems"

This was my 3rd operation my next is for an EUA which will make it 4 then the fistulotomy will make it 5 at least.
Its so draining emotionally when you can't see an end to it all. It could be alot worse i suppose so i have to just get on with it.

Thanks again for your reply and i hope all is well with your recovery.

Take care xx

@pebbles1897

Sounds awful, it’s so unfair that your doctors are giving you such vague responses.

What is an EUA? Sorry I can’t work out what it is.

Have you read the forum? Other people’s previous messages may help you

There are a couple of people on here who have recovered afterwards which is what we all want to here
Mine has been ongoing for 2 years now. I’ve had about 7/8 operations. My next one will be around April/May.

It is hard to talk about because no one truely understands and you’re right it’s so embarrassing.

Mine discharges a lot everyday, I use sanitary towels between my cheeks to help. So I think that’s normal

I would say I’m more uncomfortable on occasions rather than in pain. But the first two /three weeks this last time round (December) was very painful.

Give it time and hopefully the wound will heal more and you’ll be in less pain. Hot baths definitely helped the most. More than painkillers, but unfortunately they soon turn cold and you can’t sit in them all day!

Try writing down all your questions and take them with you and write down the answers the doctors give you. That may help

X

Hi @pebbles1897

I'm so sorry you're going through this nightmare

Re the questions you have, my CRS would tell me what had happened in each surgery just after I came round and I was always confused and couldn't remember what he'd said So in the end I would write down my questions and call the hospital when I was home and rested and ask to be put through to his secretary who would then get him to call me back to answer the questions. I just told him I was sorry to bother him but I was confused when I was coming round, he didn't mind at all. Could be worth a try?

Thinking of you and sending lots of healing vibes

Hi @Sazzle14

An EUA is an examination under anaesthetic. They put you asleep to have a rumage around down there and you wake up sore and bruised and none the wiser 😷 Yes I've read the whole forum and i can relate to what everyone is saying. Its so helpful. You can read all the leaflets and websites regarding this but it's so much more helpful to hear peoples personal experiences i think. I rang my specialist nurse today and got her answer phone, i left a message to call me back which she did but while i was on the phone to my sons school so when i tried to call her back again i couldn't reach her. Try again tomorrow. I've got a list of questions i want to ask, i hope its not like the doctors when you only get 10 mins to talk cos it could take a while lol.

Hi @DontStopMovin

Thanks for taking the time to reply. Before my operations you can't move for surgeons and specialists all wanting to talk to you, explain what they are going to do, wanting your signature etc But the minute i wake up there's no-one to be seen just a nurse who when i ask anything she just says "Im not sure i can't understand the surgeon handwriting"

I totally appreciate everything they do and i understand our NHS is ridiculously over stretched im just still in pain since my surgery Thursday and im just venting so thanks for letting me.

I think when i woke up on Thursday to another Seton it just defeated me abit, going from knowing how the next couple of weeks and months were going to be, to now not knowing what's going to happen.
Im just glad from reading all of the comments here what's happening is normal and im not getting mistreated or left in anyway and that unfortunately this illness does take a long time to heal from.

I suppose im only 8 months in and should count myself lucky with some people having suffered for 2 years+ 😓😔 I dont know how you do it.

Sending lots of love xx

@pebbles1897
EUA... got it thanks.

I totally relate to everything you just said. Before surgery you are seen by everyone and afterwards no one is to be seen :(

I tried calling my surgeon but didn’t get a response after leaving a message with his secretary. Just an appointment letter in 3 months time.

I was told before my last surgery they were sure it was going to be my last and when I woke up and had another seton in I just cried.
I cried every time it was mentioned or I had to talk about it for at least two weeks. I felt just how you did.. defeated and a bit deflated. Even though it’s hidden it makes me feel unnatractive... does that sound ridiculous?

I hope you hear back from your nurse soon

@DontStopMovin

Thank you for always replying to people’s post. It’s really thoughtful.

Just checking in

Sorry to hear you’re having a rough time @pebbles1897 I had to have an MRI while I was in hospital, I think they said it was to rule out any other hidden diseases/problems and to also get a really good look at the fistula/tunnel/abscess. Apparently my abscess was massive

I’ve just been telling people I had to have surgery on a hole/tear in my bowel. I feel like that sounds a bit nicer than a “perianal fistula which caused a huge infected abscess in my rectum and now I have a butt drain”

I keep forgetting to ask how much discharge I’m supposed to be having, some days there’s barely any, some days there’s a lot. I’m just wearing overnight pads round the clock, I’ve found some that are extra long so they sit in the right place.

I’ve really struggled with constipation, I saw my Gastro last week and he kept telling me I wasn’t, I probably just felt like I was due to everything that was going on in there. But I knew I was. I felt like I had a rock blocking the way out My GP gave me a fleet enema and some osmalax powder to try. I thought for sure the fleet would work as it was so bloody big but nope. I FINALLY managed to go properly yesterday, and I’ve never felt so relieved!! 2 weeks after being discharged and 1 week after the fleet and starting the powder drink

I see my CRS in a week and a half to supposedly get my seton out but I’m not getting my hopes up.

Hey @MrsDrSpencerReid

How did you follow up appointment go?
I hope you are doing well.

So a strange thing just happened to me, i went the the loo then hopped in to the shower and as I was cleaning myself I noticed my seton stitch had disappeared!!
It’s gone! So I don’t know if it fell out or it broke and went back inside!? I’m a bit gobsmacked and worried
Thankfully my follow up appointment is on Monday for a date to get my next surgery.

Has this ever happened to anyone before??!!

I’m not in any pain or anything, probably the least amount of pain I think I’ve ever been in so far in the journey. Would love some support or knowledge from anyone please!

Xx

@Sazzle14 uh oh! Hasn’t happened to me sorry, but glad you’re not in any pain! Maybe it came out when you went to the loo?

I’m doing well, I had my seton taken out last week! I think it was in for just under 2 months. The Infliximab seems to be working really well for me, I’ve had 3 doses now and I’m now on 8-weekly maintenance doses.

I feel better than I have in a really long time

Hello. I'm new to this chat and read a lot of these comments which have helped me with this journey i've been on. I'm a 31 year old female and back in September 2018 I started getting pain in my back side, I ignored it at first then went to the doctors which they sent me to the Emergency. I was given a cat scan which showed an abscess. I ended up having anal fistulotomy surgery Oct 30, 2018 with a seton placement, 4 weeks went by and the pain only got worse and there was no relief. I went back to my doctors and he did another operation on me the next day. Same surgery, but he had to make the incision larger for the seton so it could properly drain. Long story short, the pain ended up getting better with time but my seton was in place for 12 weeks. I finally just had my seton removed a few weeks ago and I'm still noticing quite a bit of blood and some fluids from the opening of my incision. I use gauze pads and sanitary pads daily and shower at least 2 to 3 times a day to keep the area clean. As you all know, this area is extremely difficult to keep clean and dry.

I'm wondering how long it takes for the incision to heal from where the seton was placed. It seems like the opening is not closing or scabbing over and from what I've read online, it can take several weeks to months to heal. I'm so frustrated with this and it's really made me upset and feeling down for the last few months because it seems like its a never ending battle. I was so pleased when I came across this group chat and really appreciate any feedback. :)

@lana87

Hey
It’s such a awful thing To go through I hope you’re doing ok?

Well following on from my last post... I had a cutting seton, which is put in place to cut through the last bit of the tract and scar tissue heals from behind it as it goes through and then eventually it falls out and then that’s it and within two weeks it has closed and heals up. No more fluids or pain.

So I believe after 2 years and 7 surgery’s I can say I am fistula and seton free!!!

I would suggest you go back to your doctor and check it over because that happened to me near the beginning and it wasn’t healing up and still draining for like 6-8 weeks but the fistuala was there and I had to have the seton put in place.

Fingers crossed for you

I hope my story and the fact I’m through it all after a long gruelling time brings light to others and I’m very grateful to those who I spoke with in here
It helped a lot!

Firstly, congratulations Sazzle!!

Can I join? I had an abscess this time last year, it was agony, so I went to the hospital, got antibiotics, and it burst by itself, but never healed. I kept thinking it was getting better, but no. It was, quite frankly, disgusting. I googled, and worked out I must have a fistula.

I went to the doctors in September, and they referred me to the CRS's service. Saw them and they diagnosed a fistula and booked me in for an MRI (to check its path etc) and surgery. Surgery got postponed a couple of times but then in January I went in. I actually had two fistulas, one superficial, which they laid open and it healed, and one deeper that went through the muscle, so they placed a draining seton. I didn't see the surgeon after the surgery (they're so busy), but read this on my notes! I don't have any pain from the seton at all luckily.

At my first follow up, everything was well, but now I've got a little abscess next to the original wound/where the stitch comes out. It's not awfully painful, but I have to sort of press it each day to drain it (TMI!!).

My next follow up is in a couple of weeks, so I'll see what they say! I probably need more antibitotics, which I was trying to avoid, but hey ho. Hope it's not another fistula!!

One note - I already have one child, and was trying for another (until this latest infection!). Back in Jan, my CRS said not to delay trying for a 2nd child because of the fistula, as they can take a long time to resolve. His exact words were "don't put anything on hold". Just in case anyone was wondering about pregnancy/fistulas.

How are you all getting on?

@BowiesJumper

Sorry to hear you are going through a rubbish time, your experience sounds similar to mine.

If you go on antibiotics again try having the yogurt probiotics like benecol or actimel
I found they helped my stomach.

So far so good for me, I’ve healed well.
I’m just hoping my scar softens and disappears a bit, it’s not very pretty!!

I can’t help on the pregnancy situation though as I haven’t had children yet.

Good luck at your appointment next week I hope you get some answers.

Fingers crossed for you

X

Hello all. Back in March I had what I thought was just a hemorrhoid but turned out to have been an abscess. Of course it had tuned into a fistula. In April I had a fistuloscopy. After a couple weeks I had developed pimples, one about an inch from my surgical site and another one right in the wound. After a visit to my surgeon he said that I had another abscess. Waking up from surgery #2 I found out that he had to put a cutting seton. Initially the recovery from the second surgery has gone so much smoother than the first, that was until the tied end of the seton started to stick out.

Now Im dealing with the ends on the seton constantly sticking me when standing and walking. We've tried placing gauze on both sides of seton to provide cushion. Bowel movements are also extremely painful as the seton is sticking me a stool comes out. In addition it seem like stool is also getting caught in the seton as it comes out as well.

Has anyone had this issue? I would appreciate any tips.

@Byrds0328

Hey I did have this same feeling, the cutting seton seemed to of been left longer and sharper and I found I would catch it and it would pull and was so painful.
I decided to cut mine myself just below the knot. Just enough so it wouldnt catch any more and so it didn’t undo. It could still be a bit painful but it did its job and after 3 months of having it I was fistula free!
Also I used panty liners in between my cheeks.

Good luck x

@Sazzle14

Thanks for the reply! I'm glad that the cutting seton worked out for you. What did you use to cut the tips off?

@Byrds0328
I used a really sharp pair of kitchen scissors. Not the best idea I know but when you’re in constant pain it means for drastic measures!
I sterilised them before and after and I did it as soon as I got out of a hot bath, I find the heat helped with the pain.

I would make sure what ever you use is sharp because if the thread bends or tugs it’s really painful.

@Sazzle14

I have my 2 week followup this week, I'm gonna see if my surgeon is willing to shorten the the ends.

How did it got @Byrds0328 ? I don't have a cutting seton, just a drain one, so it must be made of softer stuff. You poor thing!

My checkup back in May went well, but they did say that they can't lay my fistula open as it goes through the sphincter muscle etc. He did mention that they could try a VAAFT, which sounds a bit scary - anyone had that? From reading up, it sounds like they use a little camera type thing, with a light, up your bum, then find and clean the fistula that end, and cauterise it to seal it that end, not sure what they do at the other end (ie the opening). All sounds LOADS of fun...

Another complication now though is that I am pregnant! So they're just leaving the draining seton in until after the birth, and my next check up with them isn't until November (all being well, I'm due in January).

My seton ended up falling out days before my follow up. Dr says it looks like it is healing well. So fingers crossed.

@Byrds0328
That’s what happened to me... litterally about a week before my follow up. Fingers crossed for you it stays healing!
Mines been about 3 months now and so far all good.

@BowiesJumper I’ve never heard of a VAAFT but I hope yours stays healing too!
Congratulations on your baby news!

Hey everyone....

Quick question I hope someone may help answer...

Since my fistula has healed, I think I keep getting Haemorrhoids. When I go to the toilet it just feels like something is blocking it. Which causes a slight strain and then i am in pain and discomfort for nearly a whole day, until my next bowel movement. There’s little blood but I’m just uncomfortable again

I’ve tried home treatments but they just seem to reoccur every time 😢

Sazzle14
Hi I’m new to this thread, have you tried using a suppository and laxative’s, it will help relax the bowel and soften the stools. I was told to use this after suffering from a prolapse which then required surgery and a haemorrhoidectomy (however you spell it)
My journey is similar to a lot of you guys.
The above 9 years ago, then started getting reoccurring problems. Then got diagnosed with Eds type 3, received a tear in 2017, consultant couldn’t be bothered to carry out an examination and said it was the Ed’s, To cut a long story short, this year then turned into a perianal abscess. 2 days after my baby was born I required emergency surgery for drainage. Daily packing etc. This didn’t work. I had a fistula, further surgery carried out, unable to repair as a complex horseshoe fistula. Loose seton put in place, referred to another crs, then had the lift op, which failed. Had further surgery 2 weeks ago and Had another seton put in place, which is pretty uncomfortable, I guess it’s the cutting seton, in see crap next week to discuss the lay operation.

Congrats on baby news guys xx