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?

Thanks @DontStopMovin
I'm okay. Sore most days, but still functional lol. If fine the CBD oil has been helping, just need to take antiinflammatories too for when it's irritated.

Today, not so great. We've been up most of the night with him puking. He's going to his Nana's today when I go to work this afternoon. But he's good otherwise... His birthday is on Easter Monday this year so he's pretty excited lol

Hi, I know this is an old thread but maybe some or all of ye are still around?

I was diagnosed with Crohn's disease in July 2017, perianal fistula noticed on MRI and first seton fitted. I have had the seton replaced every 2 months since then - I have had long periods of time where it has been barely noticeable but unfortunately also several times with infection, swelling and pain. My last op was 4 days ago, the CRS is confident he will be able to lay the fistula open at next op in 2 months.

I am REALLY worried about this - I know it's a step in the right direction but the thought of the pain... my fistula is located on my perineum, ouch! @DontStopMovin how long before you were able to return to work? My CRS has told me i will have surgery on Friday and be ok to return on the following Monday, id be really interested in your experience.

BMC, Exile, Corina and anyone else going through this at the moment

Also I should have said that I'm receiving infusions for my Crohn's disease which should help the fistula close.

Due to the CD I'm not able to take any anti-inflammatory drugs except paracetamol and opiates (which I hate as they make me really ill)

Hi Olivia. I'm sorry you have to go through it .
I'm still dealing with my fistula... About 2 months post op from a lift... Feels so nice to have no Seton ATM.
Still have my bad days. Waiting to see the CRS in July again to see how its going.
Fingers crossed for your surgery..... With my lift I was off for about 3 weeks, small incisions with stitches.

I also found an awesome fb group , international that has been an amazing support to me over the past two years of my journey.

www.facebook.com/groups/fistulasupport/

www.facebook.com/groups/AbscessFistulaSupportforWomen/

Lots of love on your journey. XO

Thanks for the response BMC. I hope that you are having a good day today. I also really appreciate the link to the FB group, it's so easy to feel alone when dealing with this type of problem.

Last week was tough, a lot of pain following the seton being tightened. I saw my CRS today and he is happy with progress and confirmed that he will do fistulotomy in August. I'm still nervous but also relieved to have gotten to this stage

You're welcome. I know the feeling of being lost, especially since there aren't many resources available for the day to day with this.
Feel free to message me if you ever need to chat.
Do you have a cutting Seton? I heard those are quite pain full... I struggled with a drain for a year.
So glad that he thinks the fistulotomy will be good. Sending good vibes to you for the surgery.

Hi @Ottiva, I'm so sorry to hear you're going through this, it's such a horrid condition and as BMC said it's hard to find info about the day to day side of it and easy to feel alone. I didn't learn about the Facebook group till I'd recovered but it sounds like a great support.

I'm glad your CRS is sounding confident about going for the fistulotomy in August. I had mine laid open back in Feb 2017, it was a low fistula and I'd had various setons in since May 2016. After the final surgery to lay it open I was off work for a few days and then spent about a further week working from home so I could lie down with my laptop instead of sitting at a desk all day. I then eased my way back into sitting at work slowly. Have a talk with your CRS about how much sitting they think you should do etc as I guess it's very specific your own particular wound and circumstances.

I found lots of sitz bathing and getting a specially designed doughnut cushion really helped with my recovery and I was finally healed up fully by April 2017.

Since then I've had mild pain on and off round my scar, I've gone back to my GP whenever I've been worried and they've done a great job of reassuring me.

I'm now 5 months pregnant with DS2 and (massive touch wood) I'm not having any pain at the moment, keeping everything crossed this continues!

I hope this gives you hope that there's light at the end of the tunnel, I know when I had the seton I just couldn't see an end to it and the internet was full of horror stories, but my CRS told me so many people can and do get better, you just don't hear about it.

Please don't feel alone and if you have any questions just ask

@Bmc26 such brilliant news to hear you had the lift and are finally seton free .I hope things continue to improve and your CRS has good news for you in July. Keep me posted, I will be sending you lots of healing vibes from across the pond

I'd never heard of a fistula until I'd been diagnosed with one.
And I've been going through hell ever since.
It all started back in may 2017, I fell down the stairs and landed on my bum, and it hurt like a bitch, for weeks my bum hurt but I just put it down to bruising my bum from the fall.
Then the fun started, I started having hallucinations, my favourite was that I was in trouble with mario for stealing all his one ups, I generally felt like crap then I noticed that I had bloody pus coming out of my bum, then the fevers started, my fiance made me go to the hospital where I was diagnosed with a fistula with borderline sepsis, I was admitted straight away and put on IV antibiotics and pain medication, I had surgery the following day where they laid it open and drained it, they removed 10ml of pus so God only knows what was in there before it burst.
I spent three days in hospital before I was released, I had to see a nurse daily for dressing changes. My fiance took over cleaning and packing the wound after a few weeks which the nurse showed him what to do.
I went for a MRI in the August as part of my check up, but I knew it was back before the specialist confirmed it, I was set for another surgery in the October, which got pushed back three times, I ended up having the surgery in January 2018, where they did what they did before, drained it and cleaned it out, then I was back to having it packed and dressed daily. Then I had another MRI in may where it showed it was back again, so I had surgery yet again at the start of August, this time they gave me a Seaton stitch, again released from hospital, but I've been in pain ever since, I was due for my check up in December but I've had to get in contact with my specialist early as I'm in agony, it hurts to do anything, I can't walk for very long or stand or sit down as the pain can be excruciating, im bleeding and there is always pus coming out of me. sleeping is nearly non existent as I'm constantly woken in the night with pain, going to toilet or even passing gas causes pain, so I spend the majority of my day in bed as it is the only place where I get some comfort, so I saw the consultant a couple of weeks ago and I've been told the stitch isn't working properly and I'm very swollen inside and that's why I'm in so much pain, he has put me down for surgery urgently, but if it gets too much I'm to go back to a&e and hopefully get admitted there.
Well it's felt good to get that off my chest, all I feel I do these days is complain about how much it hurts and how miserable I am, my poor fiance, God only knows how he puts up with me

I’ve been on mumsnet for awhile now and never found this thread until I was googling fistulas.

I had surgery on Halloween to clean out a perianal abscess, with an MRI done the week before showing a transsphincteric fistula. My CRS couldn’t deal with the fistula during the first surgery so I go back in 2 weeks for a check up on abscess wound and to sort out where we go next.

He’s said he wants to go back in and place a Seton, and sounds confident about it all but I’m terrified. The more I google (I know I should stop!) the more down I’m getting. I’m a SAHM with no family in the country (expat) with kids in sports all over. DH can be off work to a certain extent but not long-term. Only a couple friends know what’s going on because it’s embarrassing and I don’t need everyone and their dog knowing about my bum area.

I’m not really after any answers, just somewhere to put all this down. I’m sorry to read others going through similar and also happy to read of some success!

Hey everyone

I’m really struggling to deal with my seton
I have read your stories and I’m sort of looking for the light at the end of the tunnel.

I don’t have anyone to really talk to and the surgeons are always quite vague with answers.
I’m on my 6 surgery after an abscess and then 5th seton so far.

The scar is now huge and Its really effecting my everyday life and well being and my confidence

Does anyone else feel this way ?

@lola006

I hope you’re coping

I didn’t realise how common this was until I searched online for more answers

X

Hi @sazzle14, sorry you’re in the same boat :(

I have my Seton stitch placement Jan 9 though I’m hoping when he goes in it’s a superficial fistula and he can lay it flat. My CRS said he won’t know what’s what until he gets in. Planning for just life is hard these days and I’m a bit miserable.

As others up thread suggested there’s a great FB group called Abscess/Fistula Support for Women. It’s a closed group with lots of support.

@lola006 @streetbeat
So sorry you’re going through hell
I am too.
Thank you for responding.

I know I heared about the fb group but I’m not on It so I cant join a group.

I really hope yours heals for you quickly. And you don’t have to go back again

Mine all started with an abscess back in jan 2016 and then the fistula was there and I had that laid flat but it didn’t heal so they put the seton in and now I’ve had the seton replaced 4/5 times now. My last op was the 12/12/18
This was the first time I felt really low and depressed about it. Hence why I reached out on this forum
I think the first couple of times I just came to terms and thought I just had to get on with it. But I was given hope this time and then the seton just got replaced.

How have you been coping?
Planning for life is hard? Can I help at all?

X

@sazzle14 - that sounds awful, I’m sorry. I can totally understand why you’re struggling, it sounds never ending for you. I’m only at the beggining of all this and just desperately hoping surgery next week resolved the fistula (not holding my breath some days, positive others).

Sorry, that probably came off a bit melodramatic - planning for life - but it’s how I feel. I don’t know how long I’ll be off the school run, I’m an expat at my mum wants to visit in Feb but who knows what shape I’ll be in, I go abroad to my best friends every year and it’s all booked for May but who knows how I’ll be, I was just getting the hang of yoga and now I’ll be out for who knows how long. I’m a SAHM so not knowing how useful I’ll be in the next few weeks is frustrating me. How did you find all of the ‘what if’s’ ??

@lola006

I know those feelings Im hugely hoping for you it is all sorted quickly.

After each opp. I needed about 10 days- 2 weeks to recover. And to feel my normal self. But I was still up and waking and doing things about day 3-4 just taking things easily.

I still saw friends and went to events and got on with everyday life.

I went on holidays still and just looked after myself in the process.
Life does go on, and you can still do most things. You’ll be able to go back to yoga inbetweeb and drive and do all the normal things.

You just have to be strong and have people around you supporting you

X

Hi @Sazzle14 and @lola006

I'm really sorry you're both going through this, it's utterly crap for you and I so hope you both start healing soon.

In terms of planning for life, after recovering from each surgery I got on and did most normal things, but I always took a little bag with me that had an emergency kit with a little magnifying hand mirror, dressings, pads, wipes and hand sanitizer just incase anything happened. I never needed to use the kit but it gave me peace of mind. I also work a lot from home and invested in a doughnut pillow which really helped.

Thinking of you both

@DontStopMovin
Hey, how are you getting on now are you still fully recovered? Did anything come back after having your baby?

How did your scar heal?

Thanks for messaging us. So nice to hear people’s stories of recoveries, it gives a little hope

Hi @Sazzle14

Yes, DS2 arrived in October, he's utterly gorgeous, he's asleep in my arms right now!

I'm still fully healed, the CRS said I could opt for a natural delivery but I opted for an ELCS as despite reassurances from the CRS I was so anxious that I might damage the scar, all the consultants were really nice about it and 100% backed my decision.

I still get the odd bit of pain when I sit on hard surfaces for too long, so I just avoid doing that as far as I can. The scar has a bit of a dip in it that needs a bit of extra attention when cleaning after the loo, and I give it a quick spray in the shower for extra cleanliness

But other than the above it's all good and (touch wood) I'm loving having a maternity leave that doesn't involve daily visits to the nurse!

I really hope my story can give you hope that things can get better, sending you so many healing vibes

Post edited by MNHQ

@DontStopMoving

So glad your labour went well and everyone understood. That’s definitely something to have in mind as I havent had children yet, probably wouldn’t either until this has healed.

Did you ever find out why you got yours? Do you have chrones/ibs?

That’s great news. I’m very happy for you that you are healed. I just hope my next opp will be the last
My next consultation is not until March and the opp tends to follow after 4-6weeks so I’m looking at least April-May for my next seton or fingers crossed a repair.

Will your scar fill in more and have they said if one day you will have no pain ??

Hear from you soon

I’m new to this site and reading this thread really helped me during these difficult times.

I’m only 22 yo and I was diagnosed with Crohn’s disease at the age of 12. I’ve had my first abcess drained in Jan 2016 and had a seton put in shortly after. That seton is still there since.

I’ve tried so many medications to try and heal my fistula but with no luck. My doctor put me on antibiotics for 4 months last summer to get my fistula to stop draining so we could finally take the seton out. It was going really well; it stopped draining almost completely and I was having so much less pain. A couple days after I stopped the antibiotics, beginning of August 2018, I developed another abcess. Luckily, I didn’t have to get it lanced since it drained itself through my fistula. But unfortunately, I was back to square one and my fistula is still going strong, draining constantly.

At the beginning of December 2018, I got yet another abcess. I had it drained and did an MRI shortly after only to discover another fistula had formed.

I saw my CRS days ago and he is planning another surgery to put a second seton in my second fistula. I’m having a hard time thinking how I will manage to have 2 different setons at the same time. Has this happened to anyone? I’m feeling really lonely and depressed. I don’t know if I can do through all of this again. I’ve been through SO much with my Crohn’s already and I feel like this is so unfair. I can’t wrap my head around it.

My family is super supportive and I couldn’t ask for a better significant other for me but I feel like I am always complaining and I’ve never been like that before.

I was wondering if anyone could give me some advice to go through this. What do you do to make yourself feel better? How do you handle the pain? How do you manage to stay positive?

Hey @amanda333

I’m so sorry you feel alone. That’s how I feel quite a lot of the time.
Your journey sounds very similar to mine.
My first abscess was in jan 2016 too and I have had 5 setons since then.
I’ve been told fistulars don’t really like antibiotics, I’m not sure why though.

I don’t have chrones but have definitely been suffering just like you. Always uncomfortable and depressed but was never like that before.

To manage pain I occasionally use co-codomol which helps. I use a sanitary towel folded in two and put between my cheeks which soaks up any drainage and protects the seton from catching or friction which also reduces my pain.

I try and have a “you can’t do anything about it, so you have to just get on with it” attitude which I know seems obvious but unfortunately it is true. And I try to stay positive thinking forwards to my next operation which is in 3-4 months time.

Treat yourself to your favourite things. That makes me feel better. Nice hot baths help with the pain and talking to friends and family also helped me.

Some people on here have struggled and have repaired and healed so there will be light at the end of the tunnel.

I hope some of what I said helps you

I also feel very lost and alone a lot of the time

@lola 006

Hope you’re doing well
How did your surgery go?

Thinking of you and hoping it all went well
Sending healing vibes your way

Here to talk if you need it

@lola006

Hey @Sazzle14,

Thank you so much for sharing. I’m so sorry you’re suffering too and I wish you all the best with your next operation.

I put a gauze instead of a sanitary towel to soak up the drainage and that makes me feel way more comfortable.

You’re right about the “you can’t change this so you just have to live with it” attitude. I should think more like that. Generally speaking I am a positive person but I just find it hard these days.

I talk to my boyfriend a lot about this (he’s been there for my whole journey) and he is really supportive but it’s hard because he can’t relate and he can’t truly understand what I’m going through. Also, I don’t know anyone who has Crohn’s disease, let alone fistulas so it’s nice to know that others are experiencing the same thing and that I’m not alone.